Four Little Ladybugs

Peaks and Valleys

2012-01-27T10:56:00.002-05:00

Emily came up to me yesterday, tucked herself in the crook of my arm and told me that she misses Ava. I asked her if she had anything she regretted. Of course, I then had to describe what "regret" is to my 7 year old. She told me that she wished she could reach into her "Ava Book" and wrap her arms around her sister.

She's been really going through the fire lately. There is a new level of understanding and concept of loss that she is processing and trying to organize. With it comes a new level of pain and sorrow. Professionally, I know that as a child's ability to think on different levels expands, that child will have to grieve on a different level and in a new way all over again. As the mom of a child walking the walk it catches me off guard each time.

I realized that my sweet child is not afraid to miss her sister. She's not afraid to let her arms ache to hold her, to smell her, to remember how she was really here. Guess what? Through December and most of January I hit a wall. Early in December I got a stress fracture in my leg. I have yet to run since 12/2/12. I was in a great deal of pain until a couple weeks ago. I was trying to muddle through the "festivities" of the season. I was spent. I didn't want to do anything, my body hurt and my soul was broken and sad. For some reason the complexities of all that Allan and I personally LOST was all I could ruminate upon.

My daughters are amazing. They are allowing themselves to feel the loss. I have been afraid to allow that. I prefer to focus on what we've gained through the loss. It's easier that way. But we have to focus on the actual hole that Ava left in our lives. I think it's the only way to keep it from burrowing deeper into my soul.

After Eric died, I did FEEL the achy, empty arms, the loss of a future, the pain of dreams doused. With Ava...sometimes...I can't. It's just so hard to allow that feeling to develop and manifest itself. So there was the wall at Christmas. The black, painful pit. The one with the mud walls so there is nowhere to grasp. There was nowhere to hide. I couldn't pound out the thoughts in my mind through running. Instead, I had to sit still and let the pain in my leg become the precipitous to that which was trapped in my heart.

Sometimes, I think God allows you to feel that way so that you remember to cling to Him more. In throes of the bleak days I wonder where He really is. I know He is there, but I feel like I'm slipping. Really I think that He is helping me along. He allows me to feel the pain and ache so that I can reach a higher peak.

I get frustrated having to be "on" and guiding my children through this emotional maze they are trapped in. I am glad I can do it. But it gets old. Really really old. Then there is a sweet child, wriggling herself into the crook of my arm, seeking comfort. I then notice that she in fact helps me. I wish I could be as brave as she.

Fa la la la la?

2011-12-01T11:03:00.003-05:00

If the truth be told, I am having a rotten time of it. I often said that the second year, in some ways, is harder than the first after a loved one dies. I don't think that it's as intense, so that part is past. During the first year you are numb, depressed, surviving from one moment to the next clutching your way through the day, the night and the drudgery that comes along with the long minutes of agony.

During the second year, a little of that black cloud lifts. There are longer periods of time between "normal" and bad days. It's not every minute. However, you are not as much on guard of your emotions. When the bad days come, they hit you like a ton of bricks. You feel more and with your guard down, you remember more.

I'm not saying that this is bad. It's just hard. It's a pain. And I don't want to go through it, AGAIN! I'm trying not to have a pity party over here. But I want to scream "IT'S NOT FAIR!!!!!"

I get so annoyed with myself when I feel this way. I don't know what to do with myself, so I berate my thoughts. I hear of all of these wonderful things happening in the lives of my friends, co workers, family. I hear of struggles and trials through the same circles. Yet I find myself feeling, 'what about me?' 'Why can't I have that?' 'Why did they get to take their kid home?' 'Why couldn't my babies have something that medicine could heal?' There are miracles happening right around me as people I know and love struggle, suffer. I KNOW it's a miracle. I SEE it happening. I KNOW that there are friends out there whose children could have died, but didn't because we live in a place where medicine is easily accessible and curative. Don't get me wrong. I am grateful for all of these things. I am grateful for the blessings for these people. I'm just a little jealous that it didn't happen for us, twice.

There's been flash backs, memories. Feelings of guilt that we didn't do for them more than we did. It's nothing to solve. It just is. I always feel sad when I look at our surviving children and see their heartbreak. Emily is having memories of the night we told her her sister died. Alexa broke down when we donated her tricycle (at her original request) because she had a vision of having Ava ride it someday. Elaina hugs Ava's picture and simply states that she wishes that Ava could come down to us again. They want to hang a stocking for Ava and Eric. It kills me to do so. They play baby all day long. They are playing out their need to love a little one. They wish they could have a little sibling. We can't do that anymore. Little things that pierce my soul, some days more than others.

I look at our Christmas Decorations, I think about why we celebrate. I think about smiles on little faces. I feel removed from it x6. I was thinking about about how I am seeing a lot of social media about remembering those who have a hard time during the "holiday season". On my drive into work last night I realized that of course there are so many who have a tough time this time of year. As we age our lives move from the child like innocence and wonder to reality. Reality is that we live in a sinful world. We are sinners in the world. Sin is a bundle of bad choices, ugly thoughts and feelings, negative actions, even death. Part of our humanity wants to sweep it under the rug and 'be happy'. That's not how it works. We are all touched by a form of grief in our lives. So of course there are those who have a tough time around the significant markers on the calendar. The longer you live, the more people you love have endured suffering.

So what do you do? As a grown up you enter a quagmire of sadness. Living is hard. Do you try to keep on keeping on and show your children the joys of the season? Do you squelch the twinkle in their eyes as they gaze are the decorations, as they plan surprises for those they love? Do you try to ignore the festivities because your heart is heavy? I want to. But I can't. The Bugs have unbridled joy. I don't want to be the Mom who makes this season harder on them, because my heart is broken and I am suffering from my sinful thoughts.

There is a little thing called Grace. It comes from God. He gives you what you need, when you need it and you don't deserve it. It's how I keep moving on. I know that even though I feel a layer of film exists between me and the festivities, I can enjoy something. Sometimes it feels like the cloud will never go away. Then I see grey skies, and sometimes there's blue trying to peep through. I try to take delight in those little twinkly eyes. I try not to squelch that. They have a whole life to live and plenty of time to deal with whatever comes their way.

God gave us Jesus. I know that some of you don't understand that, or don't believe it, or don't get it. I struggle with that often. I struggle with how to get someone to understand the depth of joy and hope you can have, even in the dark and more sinful times, when you really really allow God to be the captain of your ship. I know that each person will have their own relationship with God, just as we relate to our family members in a different way. The operative word in that sentence is relationship. It's not a static thing. It's something that you work on every day. It changes and sometimes it's good and you are on a high. Sometimes its low and frustrating. But it's always there and always based on love.

We get mad if a loved one hurts us. We turn our backs and wonder how could that person love us if they did THAT to us. We push the person away. We want nothing to do with them anymore. But the problem is that when the anger subsides, a thought sneaks in. We still love the person on some level. So we make ourselves angry and fuel that feeling so that we don't have to actually FEEL the true feelings of the infraction. Walls walls walls go up and suddenly you look at your fortress and you are trapped. We do this with God too. But with Him you can't build an impenetrable fortress. He's the one who made you, me, my broken children, my healthy children. He created everyone on this earth. We are here for His purpose, whether we are born to what someone thinks is a "deserving" family or not. Each person born has a purpose and the capacity to love, themselves, each other, God.

You see, even though we are down right now. We know there will be an up point. We know that God loves us. We know that God loves us. We know it, but we need some Grace to feel it, to roll with it and to move to the next step. We need His strength to climb out of the pit we find ourselves in so that we can see the Blessings right in front of us. Those pits are deep sometimes. 'But His grace is sufficient for me, His strength is made perfect in weakness.'

I hate death. I love a death with hope.
I want 5 kids in my house. I am glad two are healed and no longer suffering.
I want "that big thing" that will make me feel better. I know that there may not be a 'big thing' that is tangible. But God loves me and hasn't forgotten about me. He will make me get to the next day, and the next, and the next.

For Christmas this year, won't you try to see how God loves you and Blesses you when you are down and don't feel in tune with Him? It's hard. I know. It's really hard. But I bet you will be surprised.

Happy 7th Emily and Alexa!

2011-11-17T07:55:00.003-05:00

On Emily and Alexa's 5th Birthday Ava went to the hospital. It was the last time they held her. On their 6th Birthday, the cried during the Birthday song, and walked around with long faces all day. I asked what was wrong and Alexa replied, "This is hard for us Mommy." It truly was one of the worst days of my life. (I suppose that is saying something!)

For 2 years I've been trying to put as positive a spin on their 5th birthday. I've been very frank with them, I've cried with them, I've expressed my anger about it as well. From the time Ava went to the hospital I've grappled with the 'why did she have to go on THEIR birthday' as much as the Bugs.

It's exhausting. It's frustrating. It's just H.A.R.D. They needed another memory. Something to be thrilled about.

Last week we packed up and headed to The City. We stayed over night. We took the Bugs to the top of the Empire State Building. We had a birthday dinner at the American Girl Store. We agreed to frivolous spending on things that are normally not even worth asking about (doll hairstyles and ear piercing ~Really?!). We had AMAZING cupcakes at Magnolia's Bakery. We saw Times Square, Rockefeller Plaza, Central Park, St. Patrick's Cathedral, the New York Public Library. Of course we rode the subway. We spent the morning with my childhood best friend who lives in Manhattan and I haven't seen for 11 years! We ate hot dogs and pretzels from street vendors. I soaked in the rhythm of NY speech patterns and was seriously contemplating moving back. WE HAD REAL PIZZA!!!!!!!!!!! We were TOURISTS and I was not ashamed!

On the way home, we stopped in Jersey and stared at the back of Lady Liberty from Liberty State Park. We stared at the NY skyline. We showed the Bugs the Empire State building and talked about perspective and size. We talked about September 11th and the Twin Towers. I am ALWAYS humbled by how sad I feel when I look at that skyline now. It grips me in a way I don't think I understand.

For those of you who don't know. I grew up in the Hudson Valley, north of the City. I drink cawfee and when I'm tired, I still say tawlk. I can do a pretty good Cawfee Tawlk impression. Just ask my college friends. I never "knew New York" like some of my friends. But I have always loved the City. I love it's pace, the things to see. I love the architecture. I love that if you turn right there is going to be something cool to see. Oh and, I love the Yankees.

What was the best part? The love of the City that our Bugs- who are rapidly getting BIG- developed. I loved being able to show them things that I have seen numerous times. I loved seeing the City through their wide and brimming eyes. Mostly, Allan and I both loved the joy excitement and twinkle in their eyes leading up to our trip, during our trip and since we've been home.

We can't ever ever take away the fact that Ava went to the hospital on their birthday. Nor do I want to. It's a part of their story, her story, our family's story. And let's be honest, if I were to start taking stuff away from our family story, I would be a (more) crazed Mom with an 8 year old, 7 year old twins, a 4 1/2 year old and a 2 year old! But we can teach them that it's OK to have a hard memory on a special date and know that it's OK to have a good and fun memory on that date another year. We can help them break out of the tomb of grief and know it's OK to move on. You know what, Allan and I learn that in the process too.

We were talking after we put our new 7 year olds and our 4 1/2 year old to bed in our awesome hotel room (and the least expensive thanks to discount sites). We were worried that we over did it. (Which we did). You know what? Sometimes it's worth it. It's worth to see the gleam in their eyes, the joy and excitement . It's worth it to feel a happy in a way that cracks the hollowness inside.

Of course, we now have a problem as a certain 4 year old would like to go to NYC for HER birthday and he wants "to stay for one, two, three (holds up four fingers) nights. No let's stay for four". She also wants to go to American Girl. So we are going to have to explain to her that she will need to get a job.

Mud, mud, mud

2011-11-15T08:12:00.002-05:00

All of a sudden it's November 15th! Last I knew the days were rolling into September. The Joy-Hope Foundation just had it's "Music for Memories" concert and I was getting ready to run my second half marathon.

I ran Rock and Roll Philly Half marathon. It was an amazing event. It was fun, the weather was perfect and I had a great time running with some dear dear friends. After the race, 20,000 participants strong, I was roaming to our meeting place. Got stopped by a group of happy finishers and was asked to take a picture of the crew. I handed the camera back and heard someone shouting my last name. Turned around and there was my college friend, whom I haven't seen for about that long! What a special moment. It was her first half since she's had children. She kicked my butt by the way. In our brief meeting, she told me that she thought about Eric and Ava during her race. Then she said something that I will never forget- She told me that I now have run a "Half for Each". I didn't even think of that!

I am routinely surprised by the impact my sweet babies had on those around. Another dear friend of mine had a PR (personal record) and she told me that it was because she was thinking about my babes. What an honor.

The week after the Half Marathon I ran a "5K". The Delaware Mud Run. You do it as a team. You get really dirty. It is physically demanding and it makes you complete all these obstacles that I was not prepared for. I did it to "help out a friend". She needed another team mate or they couldn't do the race. I had no idea what I was getting myself into. I thought I'd get dirty (which I hate BTW). I thought the obstacles were the mud pits at the end (which I was having anxiety about as I don't like to get dirty, sticky or put my face in the water). So there we were getting a nice rhythm and bam. We had to wait in line - for what we had no idea.

It was a 40 foot slippery incline that we had to navigate up using a rope. I got started, and slipped down, into mud. Then I couldn't get my footing. My sprightly team mate was shouting from the top for me to try the side of the hill. You could get better footing. She was right!

When I think about all the obstacles on the course that day. I realized that it was such a metaphor for life. You are just running along and wham!- there is something smack dab in your face that you never thought you would have to do or face. You stop, regroup, dig deep and ascend. Sometimes there are obstacles that are demanding, others are downright frightening. But before you know it, you are attacking them. You are hanging on for dear life. You cry out for help and you realize that God is guiding your every step. Sometimes you fall, and the recovery takes a little longer. You complete your obstacle and just when you think you are recovering, something new is lurking, waiting, challenging you. By then end you wonder if you have enough to dig deep and keep fighting. Part of you wants to roll over, hide and walk off the course. Another part of you will be so disappointed if you don't give it your all, stay the course and cross that finish line. You have a choice. You see what you are made of. You cry out because you can't do it alone. You think about what others have to endure and it propels you to the finish line. When you cross you have such a sense of accomplishment. You just did things you never did, you stayed the course and God was there with you every step of the way.

The trouble is that the obstacle course that we live is different than that of a race. On facebook you see so many statuses with the sentiments of "I wish I had a blueprint, how long can this go on, when is it over." HOwever you never know where the finish line is. In a race you wonder the same thing. "Where is the finish line? Why does this mile seem like five? When is it over?" You know that the distance will end. There will be a finish line. If you dig deep enough you will cross it, hopefully with a smile, a sense of accomplishment and with an air of gratefulness.

In life being thrown obstacles what seems like left and right makes it hard to dig deep and persevere. I struggle with it every day. I wonder when it will be "over". I spend Aug-Dec trying to live a full life but feeling mostly hollow inside. (who am I kidding, I feel like that most of the year.) I know that there are obstacles year round, some bigger than others. But for me those are intense months. There are flashbacks, smells that facilitate memory, the angle of the sun through the windows of my living room.

Then I think of that log over the water pit, the 2 inclines and the rope, the mud. I completed that course. I wasn't trained for it. I had some great girls to encourage me along the way. When I want curl up and stop trying in life, I can remember that I can do more than I think I can. God is right there guiding me on the path that He chose for me. And yes, He gives me great friends along the way to get from one step to the next. I have to decide how I want to get to the finish line- do I want to give up and wallow in my sad circumstances (yes, sometimes) or do I want to attack the course in front of me, not knowing what's around the corner: an obstacle or a reprieve? I choose to keep going. I know there are blessings in the muck. There is growth in the quagmire. So I pick up my hollow self and move.

Carpe Diem

2011-10-02T23:18:00.002-04:00

The other day while we were having story time in our Home School, we had a moment. Alexa was full of questions about God and how Jesus rose from the dead. How was that possible? Come to find out that this question stemmed from her thoughts that if Jesus could rise from the dead, he could do anything. If he can do anything, then why didn't he let us keep Ava? We spent a long time reading some scripture about the accounts of the resurrection. We spent some time talking about how while God can do anything, He does not always CHOOSE to do what WE want Him to do.

It's a tough one to swallow. How can we worship someone that can do anything and everything, but not give us what we think we need? My little nearly 7 year old grapples with questions we all wrestle with.

God loves us. He created us. But He did not create us so that we can demand from Him so He will serve us. I love my children. I do serve them from time to time. Do I always give them what they want? No. It's not good for them. It's not good for me. It's the same with God. I tend to view death as a gift. Some think of it as a sacrifice. For the person who dies, if they are Christians, gets to finish their race. They complete their task her on earth and get to have their eternal reward. To want Ava to come back would be selfish. Don't get me wrong I want both of my kids back. I wish they were not gone. But would I want them to live in the condition they were in? OF course I wished that God chose to heal each of those babies so that they could have stayed with us. But life on earth is not forever.

Sure it feels like forever sometimes, but it's not. So I told Alexa some of these things. We talked a few days later and she told me that she is angry that Ava died. I told her that it's totally OK to be angry and to be mad with God. We talked about how sometimes we get mad with each other, but that never changes our love for one another. We talked about how Mommy and Daddy are mad too. She knows it will take some time, but we will talk it through and we will work it out together. I told her that it was OK to tell God how she feels about Ava's death, He won't be upset.

When we moved on to History, we talked about Egyptian tombs. All of a sudden I looked at Emily who was screwing up her face. I asked what was wrong and she burst into tears. I pulled her on my lap, rubbed her back and told her to let it all out. When I looked up at her, I could tell she was having a flashback about Ava's graveside service. We talked about it and I held her. We were able to talk about why we buried her sister and how we all feel about it. Then we finished our lesson.

By the time we had to leave to go get Miss Elaina Pants from preschool, I was pretty much wiped out.

I got to thinking. This is why we home school. So that we can take the time to talk about what we need to talk about. This doesn't necessarily have to be about Ava. It can just be about what's going on in their little expanding minds. Then I thought about things would be different if they went to school somewhere and had to carry those thoughts that burden them around all day. That they had to suppress them and have no one to talk to.

There are so many children in our schools hurting everyday. I remember when I first got on Facebook and started to connecting with friends from my school days. I began to learn and see what they were dealing with all those years. I would glibly float through the day. Never aware.

I am so grateful for the opportunity to teach our Bugs. I love nothing more than to watch them high five when they get it. To watch their eager little faces as we talk about things they love. I love that we are afforded the time to talk about the things that are important to them. Or to talk about the things that are locked up and begging to pop out. I am just so sad for those other children in our school systems that are so heavily burdened and so desperately need to unload.

I think of the children that are bullied. But I think about those that bully as well. What burdens do those children have locked up so tight that anger and violence is the only escape?

Our God can do anything, and He can heal and reach those hearts of those fore lorn kids. I think that we should pray for them and for their teachers as they are predominate influences in their lives.

Basketballs

2011-08-13T09:30:00.002-04:00

Last week Allan and I were interviewed for 99.5 WJBR's Sunday morning "Focus on Delaware" show. One of the questions, which I now paraphrase, was 'How do you as a Mom take care of your other children after the deaths of 2'. I'm not gonna lie I had Allan go first because I was nervous, but then he got 'tell me about the Joy-Hope Foundation'. (Lesson learned).

My simple answer was God. Really that is how I can do anything. I went on to talking about the day to day, less ethereal parenting. Working the tricky balance of having Eric and Ava be apart of the family without going overboard and having the focus all on them.

I didn't talk about trying to meet the needs of little ones whose needs are so important without screaming "your brother and sister went through medical Hell and you are crying because you bumped your knee!!!!" I have always had enough restraint to not do that. I know they are two separate situations and that that knee bump hurt. But sometimes I did think it.

I didn't talk about how there is no time to cry when you have little ones at home. No time to work it out and get lost in your head. No time to open the flood gates and pour it all out for the length of time you need to. A luxury (?) I had immediately after Eric died. With kids around, these things definitely eek out, but are not attended to through to completion. Usually someone needs a drink, a hug, a snack, some space from a sister... And in the midst of your process, real time living jars your thoughts and off you go.

The problem is the build. The pressure cooker of emotion that has to escape. It will and it does. For me that is never a positive balance. I snap at the kids. Their seemingly innocuous questions turn into chirping in my ears. I put my feelings of being unsettled on them and they become unsettled. They whine, cry, pick at each other and yell. How do I react? The same way. Then I want to escape and hide never to come out. They seek my attention and want lots of hugs. I want space and to not be touched. Then need to be reassured. I guess I do too. We spiral downward. I feel out of control and all a buzz since the kids are "driving me nuts." Until, I let it out, blow off some steam and just flat out cry.

The problem is being able to cry in a way that is healing to your soul. I'm not talking about the tears that roll down your face when a memory flashes, or someone does something so sweet and touching. Rather it's that deep inner wail of intense pain that there are really no words that can possibly describe. It's hard to hear your child do it. It's hard to hear your spouse do it. It's so hard do allow it to happen yourself. What's worse is that as time marches on that "cleansing good cry" need crops up- more spaced out- but still appears. It's never convenient and always painful. With it comes the memory of how far deep in grief you were when_______. With it comes a fear that you are, as a family, slipping back to square one.

When you let it out, you see the other side and realize that it's another step on the rung on the ladder of grief. It's like dribbling a basketball. Keep it low to the ground you will not get out of the pit. The harder you bounce it the higher out you climb. When it crashes to the ground, it rebounds higher and you have more hang time and a brief encounter with the crap you need to get out of your head.

I struggle with the balance of it all. I know I am not the only one out there that does. No one likes to feel different. No one likes to be in a social setting and only see the holes life has left. No one really wants to face grief head on. I know I don't. I also know that I need to or that ugly ogre Mommy will be around to stay. The ball will bounce low and get stuck at the bottom of the pit.

Rosebuds (not the sled)

2011-08-06T11:07:00.003-04:00

After two weeks of VBS at two Wonderful churches, I look around and our house seems to have exploded. So on this deemed "lazy" Saturday we've been trying to regain control. At the same time Allan and I are planning what needs to happen next to get our Music For Memories Concert which happens on August 20!

It's hard to find balance between housekeeping, working, mommying, training for a second half marathon, getting ready to home school and to get ready for the Joy-Hope Foundation's events in the coming (weeks) and months. Sometimes, like when I typed out all that I have on my schedule, I get a little overwhelmed at what I am doing. On the whole, I know that I am going in a direction not of my own planning and so I will be just fine. On the days that I feel overloaded, I suggest that you look out. I may be grumpy. :-)

When I am the absolute most frazzled is when the house explodes. I can't think straight, I look at all the more I have to do and *KA-BL-OW* it becomes a work day, a recycle day, a "lets see how many toys we can throw away" day.

I am learning that with the crazy busy schedule we have we need to have some semblance of organization. So I am diligently trying to keep up with the systems I am trying to establish so I don't get over come when something takes over in life and we are back to square one. It's a long work in progress, but the operative word here is progress.

One observation that I find intriguing: I can not fold laundry on a messy floor. So I clean and vacuum the family room before I fold. If I can't get the job done and the basket sits, the floor is infiltrated by all kinds of laziness that my Bugs love to exhibit: tiny papers, crayons, toys, blankets whatever. If the laundry is folded and put away, this does not happen. It's a phenomenon. Or is it? Kids really do as we do and not as we say.

This morning as I donned my cleaning clothes and set the Ipod to "loud" I found I did not get angry as I usually do about my ineptitude in organization. Instead I began thinking about all the amazing people I talked to , worked with, and volunteered with over these last two weeks. I was thinking about all that God is doing in our lives- individually and as a family. Then I realized that many of these people that are dear in my life are here as a result of Ava's life and death. I wish I had my daughter there is no doubt about that. But the people that God placed in our lives as a direct result of Ava's life richly bless us and we are so very honored to know them. Through tragedy, there are always blessings. You have to work hard through the tears and negative thoughts to see them, but they are there.

I've been really missing and remembering Eric and Ava a lot lately. They would have been celebrating their 8th and 2nd birthdays in the coming weeks. There's been many moments lately where it's been highlighted that I am missing my "baby" phase as I watch who would have been Ava's playmates turn two, visit a new baby born or take my children and two others to a classroom. Those moments are sweet and tender because I love each of those kids so much. But they are not without the pang and twinge of grief and what if.

Always on the other side there is a smiling face, something that needs to get done, or an uplifting message that propels me through the moment. Sometimes a good cry can wash it away. And of course there is my "Eric" rose bush that has been horrifically neglected, greeting me with only two yellow buds in time for some birthdays.

Arms Length

2011-07-26T14:01:00.003-04:00

There's been a steady stream of unsavory news from many friends lately. Some is a big deal, some could become a big deal, some a big deal in the moment, but will end up a blip on the screen.

When I was telling the Bugs about the latest friends who are in need of prayer, Emily pipes up and says, "What is happening to our friends?" I was thinking the same thing!

Yesterday a Facebook friend posted that she was "feeling blue". Two weeks ago I was talking with someone at our church and found out that his wife is a cancer survivor. Allan and I noticed some years back that he was going with some "Surfer Hair" and then suddenly it was cut. We assumed he got a new job. Nope. Locks of Love for his love.

I am being made aware right now that we will all hallowed hall at some point in time. Depending on where I am in my walk will greatly impact my ability to reach out and listen. The people we encounter day in day out are faceless strangers, an acquaintance, a good friend, even family. But as we rub shoulders and get annoyed for the invasion of our personal space do we really KNOW what is going on in their lives?

I sometimes feel guilty that seemingly the whole world rallied around our family in our time of crisis, yet I can't seem to get it together enough to rally and support all those who are in need.

Some days, with laundry piled up and a pantry seemingly bare it's hard to dig into my hollow emotions and empathize, support, love those around me. Instead, I hold the bad news at arms length- "Whew, I don't really know them. Now I don't have to rally." "Wow that stinks, well it's their walk now."

See if I let their crisis into my soul, into my heart, I am afraid that I will fall apart. I live in a delicately balanced state of comfort, peace, emotion. Of course it's OK to be grateful that a particular crisis is not ours to walk. I don't know too many people who would be jumping up and down with arms raised to walk our walk. I think that is OK to feel that way. What is not OK is to brush it off and not follow up in someway. Even through the darkest times, I know that I care. I may not be able to be there in a way I usually would. But I will pray. But I will still stay an arms length away.

I feel like I am waking up to the world around me now. I am capable of looking outside our little world we are desperately trying to rebuild and redefine. As I take my baby steps back out into society I have to hunker down and be ready for all the crappy situations that happen to people to hit me like a ton of bricks. I have to remember that while it is that person's walk and experience but I can support, love, pray and be there for that person.

I can not believe how broken we all are. How we struggle to hang on to what is good and what we think is right. I can not believe how much God loves me and how as I move through each day that He gives me He protects me. I am amazed at the protection He provides for all of us. Just because the situation may not be ideal, the circumstances may even be horrific, but yet there He is loving and protecting us. That is the Good that I am going to hang on to. The Good that comes from the the One who protects and loves me no matter what I do or don't do.

Coming Home

2011-06-08T10:49:00.003-04:00

What a whirlwind! We sailed right through April into June. Allan was given a month off from work so he could work on the Joy-Hope Foundation. I am so proud of all he accomplished during that month. Today is his first day back and I am missing having him around. I'm back to that sense of feeling lost. I realized how much easier it is to live my life with him in the house.

I suppose we will all adjust to being back in the real world, so to speak. But I'm just saying that to have him around there are 2 of us to field all the Ava issues that crop up. I find that it's easier for me to not take on their emotions when Allan's here with me.

We also had the opportunity to travel during the first week of June. Let me tell you Alabama is really really far away from Delaware. The Bugs did so great in the car though. It is pretty funny that whenever we get in the car there are questions of "how long will this take?" "is this as far as Aunt Debbie's house?". It seems nobody trusts us anymore. :-)

The hardest thing about going away is the coming home. We all feel free and unencumbered then back to reality. I know that this is true for all who return from vacation. The twist I am figuring out is that I don't like to come home. There are too many "reminders" lurking in every corner. I keep thinking that maybe if I paint or redecorate it will help. Then I wonder if that is the right answer.

After Eric died we were able to move into this house. We needed a bigger place since our exersaucers did not really fit in our townhouse. I recall the feeling of being able to breathe again. It felt fresh and new. A fresh start. Not running away, mind you, but fresh. A move is not feasible now. I'm OK with that. I just wish I knew how to make this place not feel like such a tomb. It's like a vortex of grief we all get sucked into when we re-enter our lives.

For me this is negative in that I become easily discouraged and less motivated. I work hard to keep my head above water. I find that other peoples joys bug me. I am so so happy for them, but jealous for me. I hate that. I also find that I wait for the phone call, email, facebook message that will reaffirm me. I hope something huge happens for the Foundation and find that it's small steps that will get to the huge. Yet I sit, impatiently.

I wonder what example I set for our Bugs. We know and Trust that God is in control and has our collective backs. We lean on Him. We do. But to have a disengaged Mommy is something I wish I knew how to rectify. I suppose one tiny step at a time.

Spreading some wings

2011-05-25T09:14:00.003-04:00

We made it through our first year of Homeschooling!!! We ploughed through snow days and spring break so we could hit our required days of school mark early enough to enjoy some spring and sunshine. Yes, we will try it again next year. This time for all three of the bugs. As I am learning to live my life, I am taking this on a "I'll do it until God tells me not to" basis. Did I ever mention how hard that is sometimes?

The Big Bugs had a busy week with their very first piano recital and then a Spring Program at the school they attend for classes one day a week. I was so proud of them. Not too long ago, Emily was too afraid to even go up and sing with her Sunday School class. At first they would stand there and cling to each other. Then one time Alexa went up with out her sister and sang a couple words. Three years later, they fully participate. I am so proud of them.

The Spring Program had two performances. When we got to the evening performance, Elaina was squirrely. As the first group opened the first couple measures of the song she was in need of some redirection. "Elaina come sit still." "Why, Mommy? They sang this already!" I would love to know what she thought she was going to hear for the second performance!

As I got ready to go to the second show I couldn't help to think about HOW MANY individual and repeat performances my parents endured for us kids. Not to mention that all three of us grew up being in multiple groups and plays. Hats off to my awesome parents!

We are entering a new phase in our lives: Cheerleaders. Now that's not so new because I believe that is the role we play as soon as your child is born. "Did you go poopy? Yeah what a good girl!" But now we get to clench our hands as they go up to the front on their own power. The lights go up and what will be will be. I guess we are always in training for letting them go out into the big world.

Maybe concerts are just God's way of training us parents to let them fly out of the nest.

Anger

2011-04-19T09:46:00.002-04:00

Anger. It seems that is what makes the world go round right now. Last night I had the opportunity to sing at a shelter. As I looked out over the group of residents, I was overwhelmed by the tough exterior and the hardened eyes. These people were tired and just plain angry.

At work, I run into more and more people who are angry and forget to treat others with respect.

It seems we are all in such a rush to protect our own space. That we hold tight to our emotions and protect them with anger. That the anger inside wells up like a pressure cooker and explodes.

We have anger in our house. We all have anger in our house. The emotion itself is not a bad thing to have. When it becomes caustic is when we don't deal with it, let it out and let it go.

In our house there are a bunch of hot tempered sensitive people. Not a good combination I tell you. We constantly try to talk about and find ways to express the anger that billows in black clouds of smoke.

It makes me sad to see so much anger. I know that under the hot river is a person who was "wronged". A person who is hurting, sometimes so deeply hurt that the reason is lost.

We all hurt. We've all been wronged. How can we press on in spite of it? How can we learn to not compare one hurt to the other. How do we keep from passing the wall of fury on to our children?

There is only one way that I know how. By learning to know and rely on God. It's a hard thing to
do, even when you've known Him for the majority of your life. It's hard because you wonder where He was when the negative circumstance occurred/occurs. I know that there are many times when I've felt like that. As mad as I've been with my circumstances. As much as I've wondered where God was, I hang onto the fact that even though I may be mad, He's still hanging around, loving me. God does not promise that our life will be easy. He promises to love us and never leave us.

I ask Him to take away my anger and to break down those tough painful violent walls of the the nameless coarse faces I encounter. I'll tell you it takes a lot of courage for that to happen. To let go enough so you can feel that pain that burns underneath. But it's doable, if you ask God to help you. Maybe, just maybe anger can used to work toward the good. Maybe it might not be taken away as much as chipped away, reconfigured and changed. Through the pain and walls God has plans for each of us. He can mold us, if we millimeter by millimeter, allow ourselves to bend. We are not responsible for the decisions of others. We are responsible for how we deal with the affects of those decisions.

"Winning"

2011-04-13T10:19:00.004-04:00

I finished my first half marathon on Sunday. I was far from winning. But in my own right. I won. Not because I finished. Not because I did it. But because of my experiences training and racing. Three weeks before the race I ran 12 miles. After that run I started to fall apart. Emotionally, physically and psychologically. I was hurting and fatigued. For the first time I was nervous that I wouldn't even be able to walk run the race. My chronic back problems were finally rearing their ugly heads and causing all kinds of issues in my legs. I had a goal of finishing the race in under 2:30:00. Really I was hoping for a much better time, but I didn't want to be too disappointed. But after that 12miler I just wanted to do everything I could to keep myself healthy enough to cross the finish line. During that last three weeks, when I should have been tapering, I hardly ran at all- in comparison to what I had been doing. I found myself so angry that my body was failing me. That it wasn't letting me do what I wanted to do. I wasn't getting stronger. I was crumbling and slowing down. I watched all of my other friends bloom and improve. It was a tough blow. A really tough blow. I spoke with some experienced running friends and collected a myriad of advice. I got massages on my legs and chiropractic adjustments on my back. There were so many people praying for me, encouraging me and cheering me on. Two weeks before the race I wanted to just give up. Stop dealing with the pain and quit. Something started to happen. I realized that God called me to this race. He placed all host of people in my path to help me finish that race. At my lowest point, I was angry and jealous of what others could accomplish, I told Allan that God wouldn't call me to the race and not have me finish. Then I turned it around and said that well He did give me two children that I don't have anymore so I guess I just don't know what would happen. I woke up a bit after that. I realized that this race is not about Eric and Ava and their suffering. Oh yes it was and is my motivation and my honor to run for that. But this race was about God breaking me down in a new way. A way for me to see that my body is temporal and that it easily crumbles. A way for me to realize just how angry I am that God has me walking this path in my life. A way for me to see just how much I've been holding Him at arms length. Relying on Him, but not really letting Him in. A way for me to see just how deeply I hurt and how I need to let some of it go. It was a way for me to be reminded that I can not do anything on my own power. It all comes from Him. God asked me to run a half marathon. He did not promise me that the training and the journey would be easy and without pain. He only asked me to do it. So I obeyed, blindly. Race week arrived. My back was hurting and my legs were burning. I went to the chiropractor and had a massage and prayed that my body would stay together or at least I could ignore the pain. I distributed the Half for Each team shirts. I home schooled the bugs. We had an art show and dinner party and saw the joy in the eyes of my children as we focused on what they needed to feel special. I cried a lot as I realized how broken and disconnected my soul really is. My friend sent me an email. Reminding me that "He gives strength to the weary and increases the power of the weak....but those that Hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." She didn't even know that is the verse I would pray while I pressed my head against Ava's, drinking in her sweet baby smell. I had little pain at the start. At 4.5 miles the winner past me. Between 5.5-6.2 miles I started to see all my team mates pass me. We cheered each other on. At 9 miles I was running out of steam. I actually needed to walk a little bit so I could settle myself out. At that point I remembered Ava's verse and that this race is not about me keeping up with my speedy friends. I was at the end of the pack and I was feeling lonely. I prayed and thought about how I needed something to keep going since I had no one around me. Over my head a majestic bird took off. A little later another first time racer asked if she could walk with me a bit. We then encouraged each other up to Mile 11. I thought that it was close to 3 hours that we were out there and I just wanted to finish. We pushed each other to keep running. I walked through the last water stop to make sure I could get enough to drink. Then I ran. I felt great, rested and free. I ran over the bridge and saw Allan and my bugs waving signs and screaming for me. I thanked every Marshall and joked along the way between miles 11-13.1. I even had enough in me to speed up for the last .1. At the finish line I saw all my well rested friends who were cheering for me. These same friends that I was so proud of. These same friends who inspired and encouraged me to get there. I did it, by His power through me. 2:31:49. Winning? I think so.

Sweet

2011-03-03T07:44:00.005-05:00

The other night, at bedtime, Elaina was showing me a special picture book that her Aunt made her. She has a picture of Ava in it. So naturally she started talking about her. I wonder how much she remembers verses how much memory of her is imposed. Not that I'm surprised, she was only 2 1/2. What actually surprises me is what she can remember.

After she went through her litany of "Mommy, why did Ava die?" I asked her how did that make you feel? She looked at me and said, "it hurt my feelings." I love how kids just say what they think. It's refreshing.

Elaina gets really upset if she thinks I'm sad for any reason. It actually breaks my heart. She runs around and starts to whine and then starts to act silly and tries to make me smile. I so wish she didn't have to act that way.

Yesterday I was having a moment when the bugs were upstairs, probably undoing all I reorganized, together having a great time. Next thing I know Alexa and Elaina were downstairs with me. Alexa looked at me and said "why do you look like you've been crying." I told her that I didn't know and that I was OK. She asked if I was missing Ava. I tried to tell her that I was fine, but my wet eyes told her the truth.

Meanwhile Elaina was starting to swirl, and say, "no,no. Mommy be happy. Mommy be HAPPY." I told her I was OK. Alexa looked at her sister and said, "Elaina, Mommy is allowed to cry." Elaina settled down.

Then my sweet 6 year old offered me the Ava toys and stuffed animals that comfort her. This time they would have made it worse, so I told her no thank you. She looked at me and knowingly nodded and ushered her sister upstairs not before she peered around the corner and gave me a sweet and supportive smile.

I usually try to not have them in a position where they feel like that have to "make me feel better", I just don't want that responsibility for them. There are moments when it's so sweet, I have to share.

Sometimes I think about how those bugs can comfort and I think that it might be OK that they help Allan and myself as we muddle through this crazy life. We are family and we are living this together.

I am so very grateful for those little hearts brimming with a compassion that only God provides.

The "What If" game is annoying

2011-03-02T13:17:00.003-05:00

I've been having a tough time of it lately. I don't know why. It just happens. As I type this I'm having De jas vous.

It's a busy time around here. There are mountains of wash and piles of papers. There are toys strewn about and yet I look at them, shake my head and "hide" on the computer. The state of our home is a perfect barometer for how I feel.

We've had so many commitments of late we've been running from one thing to the next. This week is a bit quieter. The problem is that when it's quiet like this I tend to let down and unravel a bit. It's necessary, but so is the laundry.

The bugs are grumpy as they are all fighting a little of the ick that's been going around. They aren't sick per se but they are agitated with each other. I am grateful that they haven't developed the full blown sicknesses that are going around. Really thankful about that.

I am feeling out of steam about running right now too. I have a 10 run this week and don't feel geared up for it. I am just thinking about how I have to run 5 tomorrow and how I really don't feel like it.

Can you say F-U-N-K? 'Cause I'm in it.

The cool thing is that I seem to have an insight and a level of patience with the kids that usually lapses when my energy does. That is a gift that God is giving me to get me through. I recognize it as that and am glad for it.

Today I got a sweet card in the mail. What a nice gift to lift my spirits some. Yesterday when I came into the neighborhood from my run I spied my kids and my parents playing baseball in the yard. It was so so uplifting to my hurting heart.

I just saw a Thanksgiving picture with all the Cousins together. Except it's not true. They aren't all together and will never be on this earth. I hate that every time I see a photograph I have to clarify it's title in my mind. "All of the living cousins". "All of my living children".

I really hate that when I see my kids growing and changing I think of a 7 1/2 year old and an 18 month old and wonder what it would really be like.

I know that God will use the broken ugly stuff in our lives for good. But I really wonder why He thought it would be a good idea to give us two kids with Mito disease. Why that is what it took to have us start the Joy-Hope Foundation. I know that His plan is the best and perfect for us. I can see in many ways how that is.

Sometimes I just wish there would be another way.

Motivation

2011-02-19T13:35:00.003-05:00

So so many people have said to me over the past few months, "I wish I had your motivation." I wish I had it sometimes too.

6 months ago I was a depressed, grieving Mommy who had 5 babies and 4 c-sections in a little less than six years time and was in the worst physical shape of my life.

When I found out I was pregnant with Ava I resigned myself to have the post partum body I had. I hadn't even lost all of my Elaina weight yet.

Then the Joy-Hope Foundation decided to hold a 5K.

I decided to run it.

Then I ran 2 more races in the next month.

Then I decided to train past the 3.1 mile distance so that I could actually run an entire 5K distance without having to walk a bit. (Which I blamed on asthma and illness).

Then I decided to push myself to train for a 6.55 mile run in May. It was Nov. and I was up to 4 miles.

Then I found a website about "why do you run". I pictured my fragile, yet super strong babies whose every breath was like a marathon for them. I had a vision of "6.55 for Eric, 6.55 for Ava. Use Your Energy for Those Who Can't." I realized I HAD to run a half marathon. I got chills. I cried.

Then I took 3 weeks off around Christmas- I hurt my ankle, needed new shoes, and was really really sad.

New Year's week arrived, I started to hit the pavement. I got back to where I was. I kept dropping time. I got to 6 miles by the end of January.

I got hurt. I took a week off. I found the "magic" in massage therapy.

I hit the streets again. This week I ran 8.72 miles. I realized when the pain waves over my legs and my body feels weary- this is not even remotely what those babies endured. The build up of lactic acid in their bodies must have hurt. I know it does me.

I wish I could have fed them protein packed jelly beans and packets of gel.

Those sweet babies ran a marathon and burned so many calories by trying to perform daily functions. They completed their races. They earned the ultimate prize.

When I want to quit. When I don't think I can carry on. I think of that. There's my motivation.

Half for Each- That is how I run.

Ready for a Change

2011-02-09T12:40:00.002-05:00

We have spring fever around here. The snow is melting, the "biggest snowman ever" is now a scarf, twigs and a blob of snow in our front yard. The ground is too mushy for me to retrieve the scarf. I guess it will sit there for a little while longer.

Suddenly there are all kinds of questions and facts about Spring popping up in our house. "When it's Spring I can ride my bike." "EmilyAlexa, did you know in Spring the flowers come up. AND there are flowers in summer too."

Our art work is now moving focus from people and snow to flowers, green grass and caterpillars. Allan even told me that while I was working this weekend the bugs were in the garage sitting on their bikes. Seriously- that is pathetic.

I honestly don't recall our house ever being so primed for Spring. It doesn't even seem like this Winter has been too horrible. It the same weather patterns you would expect in Winter. We actually haven't had it nearly as bad as last year or as other parts of our country have this year.

I am even chomping at the bit for Spring to come.

For the last 13 months our souls have been in Winter. I think we are all ready to move to the next step. To be refreshed, renewed and encouraged. The last year, with all of the bright highlights, is overcast. I think we are ready to face into the wind and change from "hanging on" to "being alive". I sure hope so. It's tough work to feel bogged down all the time.

The bugs are blooming right now too. That is fun to watch as always.

I know it's February. I know it's still winter and more storms and grey days will come. Each season has tumultuous weather as do the seasons of our souls. To have a break in the monotony is just nice.

Duldrums

2011-02-01T19:00:00.003-05:00

We've been trapped in the house, like most of the country. Today's blizzard of a 1/3 of America translated into "Maid of the Mist" like weather at our house. Just wet, no ice. We had plans to go to an indoor play place with a friend since piano was cancelled. We didn't go. I fell asleep on the couch and missed our window of opportunity.

It's weird. I have a cold. It's not bad. Just a cold. But for the last 24 hours I've been devoid of oomph. Yesterday I took 3 naps and today a long one. It's annoying. The misguided kids have cabin fever and are in each other's business left and right.

I am so grateful that Allan got home in time to take them to gymnastics so they could blow off some steam.

You would think that I would cherish a chance at being A-L-O-N-E in my home. I would be crazy not to be. I actually hate it. I get so blue being alone here. I start to think of all the stuff I have to push way down since you never know who will need a drink or when you have to referee computer time.

It seems that when I'm alone all the ugliness of my circumstances come bubbling to the forefront. The anger the jealously the irritation of living in the shadow of grief. I get so mad at myself when I get this way. I wish I could celebrate the joys of others- I do just not so heartfelt as I wish it could be. Instead I look back on our family photos. They are all tainted by the emotions of the time. "This is when I was happy and didn't know that my life would turn upside down". "Here's some babies that turned my life upside down in a great way, but boy do I miss my boy." "Really I have three kids, but there should be a taller one in the corner over there". "Look at how joyful those bugs are when they see their baby sister...."

Then I start to wonder why I can't "have" what I've always wanted and others "get" the vary thing. I wonder why do we get to pay the price? Why do we have to lug around a couple black holes of loss? It's something I just need to work through, I know. It's just that when I think I'm OK with something it's smack in my face again and again and again. When it's that blatant I know that God is trying to tell me something. I just don't know what it is yet. I want to know. It want these feelings to go away. I need to feel peace.

After Eric's death I felt like I was alone in the world. I was the only one with the albatross of grief tight around my neck. I so know that is not true. Now I see that it's more normal than we anticipate to loose a child. I hate that that is so. I really really do. I wish we lived in a world where we were unaffected by grief and the loss of a dream. Then if that were true, would we really be able to see the beauty in front of us the gifts God gives us.

I know God has big plans for us. I know that we will be blown away by His steadfast love and faithfulness for us. Those things I know, but for now I have to shake off the ugliness of my soul and resolve those things that bubble to the surface that right now make me sad.

Long Time No Hear

2011-01-26T09:35:00.004-05:00

Hello blog! It's been a long long long time. So many times I had a thought and the intent to sit down at the computer and blog. Just not the motivation.

We made it through Eric and Ava's anniversaries and Christmas. Then I kind of crashed. Not in a bad way. I just sort of shut down and took a step back. The last year and a half has been high impact, busy and my mind got tired.

We've been keeping it simple around our house lately. There has been a refreshing break is our house. I call it the "post one year anniversary reprieve". It's been a great blessing. There is only so long that you can get battered by those waves of grief without coming up for air. The energy in the house has been easier. It's like we can all breathe a little better.

I so remember that refreshing feeling once we hit Eric's first Anniversary. I'm not saying that the grief goes away. It's just morphing into something different. The heavy black cloud that is ever looming is now up a little higher and maybe a little less dark. That is nice.

Each of the bugs have been growing, changing and maturing. It is just so fun to watch. My Dad's birthday was a couple weeks ago. The big bugs decided to throw him a surprise "Handy Manny" birthday party. (My Dad fixes everything in our house!) They spent many hours snuggling and watching Handy Manny with him while Ava was in the hospital. What once was something they did with Grandpa has become a special thing and important to all of them. Oh and when one of the Bugs says that you are a "Handy Manny" watch out- that's a high compliment in these parts.

So for his Surprise party- They told him the whole plan they concocted- it will be at his house, Uncle D will take him out to look at wood (my brother and my dad are pretty adept at wood crafting-cool skill they both have and we reap the benefits!). We will have everybody come, and Grandma makes the cake. We made a paper maiche Handy Manny Pinata, Made a Handy Manny table cloth complete with duct tape- had a Handy Manny Relay Races with Turner and Pat at the batons. We played a Handy Manny CD (Los Lobos people- it's hysterical). Grandpa cut his Handy Manny cake ("We break it- YOU fix it" instead their theme "you break it we fix it) with Alexa's Dusty. It was hysterical and she is still ticked about it. You know he didn't even ask and now Dusty smells like cake, blah blah blah- I'm 6 and these are the things I can't let go. So we, the good parents we are- threaten her that we will use Dusty to cut stuff all the time.

Let me tell you that was such fun to plan this party and focus on something else. The bugs thoughtfulness and attention to detail was so awesome.

In the middle of all of this, my Uncle had been fighting a very surprising and aggressive Leukemia. He was diagnosed just before Christmas and has spent the majority of his time in the ICU. But he is fighting and is currently making some white blood cells. My Aunt's life has been turned upside down as she lives in the ICU. Something which I empathize with. As the bugs caught wind of Uncle Don being so sick, we got to see a window into their big huge hearts.
They pray for him daily, if not more. They draw him pictures and they collected their change and gave me envelopes to mail to Aunt Peggy. They said that this is what people did when Ava was sick and it helped us.

I hate that Ava is gone. I will always hate it. But I can't help but to see the ways her life had a impact on my living Bugs. The sweet nature and giving hearts were always there. But all three of them have a wisdom and a compassion that is such a blessing to us. I fear that the death of their sister would ruin them. But I think that if we work hard and allow God to move through us, they will be just fine.

Whew!

2010-12-21T00:10:00.001-05:00

Well folks, we made it. It's always such a relief to make it through the first year. I remember thinking while Ava was hospitalized, "I really just don't feel like 'doing this and feeling like that' again."

It sucks, but here we are One year and 3 days later. It's amazing to me how I felt like I could exhale after Eric's 1st anniversary. I feel the same after Ava's. It seems we all do.

So now we are in the home stretch for Christmas. Talk about gear switching. The big bugs were so motivated to have less school work this week they sped through their last 5 math lessons in their first work book. So now we do fun stuff for the week. I think we are all excited about it.

Today, while Emily was trying to finish her last lesson she was becoming fatigued. Suddenly there was no way she could possibly know what came after 37. I was trying to probe her memory, "thirty seven......" I led, hoping she'd get it. Suddenly I hear a little voice from one who is laying upside down in my lap "38". Em and I just looked at Lain, who continued to try and put her feet on my face. (Such a fun game, for me I tell you.)

Next, Emily can't be bothered to remember what comes after 44. So I said " forty-four...dead pan...forty.......????" Lain, still upside down, shoves 5 fingers in Emily's face. And suddenly she makes no sense pretending that she can't count to 3.

One of these days when that bug chooses to let us know all she's hiding, I think we will be amazed. Recently she decided to let us know that yes, she can write her name. (Of course we knew this because she was doing it even better than she is now in August). However since then she decided that she can't be bothered with it. This way she can get her sisters to wait on her. We are going to Dutch Wonderland over Christmas Break. We told Little Miss Bug that she couldn't go unless she could write her name. Oh look, there it was.

I get the "How do you move onto Christmas" after all we have just before it. My answer- see above, we focus on all we have, remember all we lost and rejoice in the grace God gives us to continue on, one day at a time.

One Year Ago

2010-12-18T11:48:00.002-05:00

In all honesty, remembering the anniversaries of the deaths of your two children separated by 2 days is way harder than I thought it would be.

It's been 7 years since Eric was with us and today, it is one year since we had our sweet little Ava.

Sometimes, just getting through it is all you need to do.

On a brighter note, the bugs are doing really well with Ava's anniversary. I think that the harder day for them will be on Em and Lex's birthday. That truly is when they lost their sister. They only got to see Ava but a few times while she was hospitalized. That was mostly due to the H1N1 scare and the fact that they spent most of the time that she was in the hospital sick themselves.

I can remember the drive home after Ava died. I remember telling the bugs that their sister went to Heaven. I remember a couple visitors and making a Gingerbread House that broke. I don't remember what happened between putting the girls to bed and when I woke up the next morning.

I have spotty memories of the immediate time after Eric died. One that burns in my brain is of disbelief, emptiness and feeling like a failure. (How could I have a child that died?) After Ava's death, Allan and I had three amazing and wonderful bugs to go home to and to care for. For all my grumbling, they are the ones that keep me going. For that reason, I did not feel lonely and a hallow empty feeling after Ava died. I, of course, have a hole in my heart that is bigger than I can write about. There are feelings of disbelief- but not surrounded in embarrassment. It's more of a "Really? REALLY? This is not what I thought growing up would be like. SERIOUSLY? God are you SERIOUS? You want us to do WHAT?"

So we are incredibly sad. Always will be, I suppose. But in a few (seemingly LONG) hours, this anniversary bonanza will be over. We will have completed another year without our Fuzzy Monkey and the first without our Tiny Bug. Honestly, I'm proud of us. This really sucks, but we are still holding hands and walking where He needs us to go. Through my tears and my broken oh so broken heart I am saying, "Go Us!"

Anniversaries

2010-12-13T12:11:00.003-05:00

This week we face two big anniversaries for our family. Wednesday the 16Th marks 7 years since Eric went to Heaven. Not as a tough pill to swallow as the time marches on. Always we will miss that sweet little guy and often wonder "what if" he we still had him with us. But as time progresses, so does our acceptance.

On Saturday December 18Th we will mark Ava's first anniversary in Heaven. This one is a little more poignant. The bugs all remember their sister and have to grieve this one too. I have to say though, I am looking forward to being able to exhale. Living through the first year of loss is just a big held breath. You don't know what grief lurks in the shadows. You sure don't know when the wind will be knocked out of your sails as you try to press through the storm.

Allan often says, and I agree with him, that their birthdays are a lot harder. Those dates would be significant if they were still living with us. The anniversaries of their deaths, would just be dates on the calendar. Days we would be pushing through so we could get to Christmas. Part of me, of course, would like to bury my head and skip the whole anniversary thing. But the other part knows that we have to face the reality of what happened on those days. So digging deep for strength, I find myself allowing myself to remember those final days. Why bury it? It is the story of our family. It is what happened. Gut wrenching and hard, but it is what it is.

What it is, has component of beauty and grace. These two dates mark the end of suffering and pain for my brave babes. They were ushered into the glory of the Lord and completely healed. I often here about how someone "lost the battle" with whatever disease plagues them. For those who love the Lord, it's not about loosing. It's about completing the journey. I don't see death as a punishment, but as the next step in God's plan for us. I am sure glad that I am able to think this way. Otherwise I'm pretty sure that my life would wholly be unbearable. As opposed to those days where I feel can't go on any more. When I feel closed off from society and God's embrace. Those days when you feel so different that know one can possibly understand you or where you come from. Those days where I have no energy to walk another step further.

During those times I just can't press on. So I crumble. I cry and I lash out. You know what happens next? A phone call. A letter. A Facebook message. A voice from God Himself or His voice through those who are feeling His tug. His nudge to pray and reach out. I am not alone, and I am not out of His embrace. I then can get up, and keep pressing forward in the knowledge that our family is on this path as a result of His Divine Plan. So we can have Joy. We can Have Hope. And we will breathe again.

To Honor Eric and Ava this week, the Joy-Hope Foundation is striving to raise $500 for each month that we were blessed to have them in our care. If you would like to contribute please check out our website www.joyhopefoundation.com to donate.

Pioneers?

2010-12-06T12:09:00.003-05:00

Last week we took another step in this blind walk we are taking. There is new, high powered genetic technology that can map out the entire human genome. There is a research project that can compare data extrapolated from the DNA tested. The intent? To decipher the data and point to a gene that is, as we say in our house, "broken". The goal: discover what happened to Eric and Ava. The result: the discovery of a new gene that effects and causes Mitochondrial disease.

To play we need DNA and lots of it. Eric's DNA and Ava's were extracted from their muscle samples. Allan and I needed to donate lots of blood to the cause. With our hearts in our throats, we agreed to the research project and scheduled a time to donate samples. We got a sitter and planned to trek our way to CHOP at an ungodly hour so Allan can get to work. We mentally prepared for the trek, remembering that the last time we did this our sweet baby bug was snuggled and bundled in the car seat behind us.

Then I got the email. They needed samples from at least one unaffected sibling as a control. Well we have 3 unaffected, as they say. Yet were are the ones who are still on earth, so technically aren't we the most affected?

We call a family meeting and explain what is going on to the best of our capabilities. We let them know that while we would never force anyone to donate blood, we have to have one bug willing to do so. We also offered up a sweet deal for those who participate ( a toy and a family trip to Pump It Up). Hey, we aren't above bribery if you are going to do something big.

We made certain that they understood that what we are doing is to help in the future. We also made sure they knew that it is voluntary. After an afternoon of talking about it, playing phlebotomy and asking questions, the bugs went to bed. The next morning, lots more questions and sister playtime. Next thing I know I have my three bugs in front of me. There was a sister meeting and a unanimous decision to "do the blood thing for Ava".

We were so proud that they even decided to come with us. Honestly, it made the whole experience tolerable. Instead of an childless van, last week Allan and I drove a van brimming with sleepy bugs to CHOP.

All in all we only had one bug complete the deal. But we had another come close and a third willing to try, but we ran out of time. We are so proud of them. Their willingness to help and the fact that we went all together means more to us than we could ever express.

No doubt about it, that was a psychologically tough day for all of us. I really felt as if I was walking down hallowed halls. There was the scale Ava was weighed on. I recalled the relief I felt when I thought she was gaining and then realized that it was how it was calibrated. There I sat in the chair Ava and I sat in to have her blood drawn. There was the memory of how hopeful we felt after Ava's initial appointment. We were told she definitely had hearing loss and that she was definitely appropriate for a child of her age and gestation. Oh the hope we felt. It carried us through all we had next to endure.

We left that day as we did the time before. Hopeful for answers and fearful of what they may be and the implications they may hold for our family, the medical field, and the reality of what happened to our sweet baby boy and precious baby girl.

Traditions

2010-11-27T21:18:00.002-05:00

The bugs love their cousins! What a whirlwind 30 hours where they got to play with all of them. So while they played, Daddy went to work and I shopped with my Dad, My Sister and my Niece. My Dad and I shop every Black Friday together. Our tradition since the day Eric was hospitalized.

Our next tradition after the shopping, is to start decorating for Christmas. I love Christmas time. I love the way our house looks, I love the excitement and anticipation. I love the twinkle in the bugs eyes. I love how we whisper plans and dream about all our traditions. It's amazing to me how much of last year I don't remember. I tried to remember where we shopped last year. Blank. I tried to remember my birthday, Mother's Day, Father's Day, Allan's Birthday. Nothing. I know that if someone tells me, I'll remember it. On my own? Nothing. I was noticing this as we unpacked some decorations. I don't remember putting them out or puttting them away last year. I also don't really remember where some came from either.

This year, as with the Christmases directly following Eric's death, I am trying to get there. I want to feel that anticipation of the celebration of Christ's birth. My love language is totally in line with the holiday. I love to give gifts just as much as I love to receive them. (And I'll tell you, I L-O-V-E presents). I will get there, I can have Hope and Joy. I like to.

What I notice this year is that it is hard to find the "thing" to give as a gift. I feel a little like, "what does it matter, it's just stuff." That being said, I wouldn't feel like that if Allan came home with something in the diamond category or a ... Dyson, or some Wusthof knives.

The things of this world are not that important. Our relationships are. Times together and ever our very traditions. The things that seem to store the memories that are treasures, painful and poignant. The routines that touch our very souls and make us feel connected to the ones who have gone before and connect us to the ones who are within reach. This year the bigger bugs are remembering all the "things" we do at Christmas time. They are remembering the traditions we started and missed last year and are asking to reinstate them.

I love that they remember all these things. But I don't love that we didn't do them last year. I don't love that Elaina does not know how "we make pie" together and the Bigger Bugs don't know that I "know how to make bread" (..."But Mom, is THAT how Grandmas does it?"). So I think I need to do those things more with them. I need to dig deep, stop feeling sorry for myself and remind them that we do love to bake.

Tonight we decorated our Christmas tree. I cried, as I do every year. I miss my kids. I really do. My Bugs let me cry without getting upset about it. They told me that it was going to be ok. I got a back rub and Teddy came to give me a hug. (To think that last year when Santa visited Ava at the Hospital and dropped off that bear and I thought 'oh great now what am I going to do with another stuffed animal'.) I simply told my Bugs that I just cry, because I just miss those babies.

So there is another tradition. I don't think that it will end anytime soon. I'm not sure if I'm ready for it to. Neither Eric nor Ava made it to Christmas. But they do have their own ornaments. Our Christmas Tree is one of the few places that I get to have a representation that we are a family of 7, not 5. We all hang our own ornaments, and we all share the responsibility of hanging Eric and Ava's. We remember that if Christ was not born, we would not be reunited. That's a pretty good tradition too.

Holiday Prep

2010-11-24T10:37:00.004-05:00

There is a lot of pressure during the Holiday season. There is pressure from the family to get together, there is pressure from the stores to spend our money there, there is a palpable external pressure to be Happy. Today is such and such Holiday. I MUST be happy.

I tend to be a happy person. Seriously though, why do I have to be happy the 4th Thursday in November and on the 25th of December. I am the same me I was on the 2nd Thurs in Nov and the same me will be around the 27th of December.

I decided that I can't try to make this holiday season the "best" for our bugs and for ourselves. I am going to let it just happen and unfold the way it must; with all it's glamour and ugliness, with the trappings of joy and sorrow we feel. I don't want to force our bugs into thinking they have to feel a way that they don't.

Sitting in a room with family highlights who is missing. Not being able to talk about it and keeping a stiff upper lip is isolating. Family pictures are not for us. I know we need to celebrate the family we are and the family we have. The snap of the shudder with us "all together" is a misnomer.

Don't get me wrong. We want to have fun. We don't want to mope. But we just may not be there on the prescribed day. My experience notes it's the exact opposite. If I HAVE to feel a certain way, the pressure becomes too much and the exterior crumbles.

We all have someone we miss at the holiday table. It's ok to miss them. It's ok to cry. It's ok to smile and have fun too. It's not ok to expect- to expect grief or joy. Those two emotions are intertwined.

We don't have to put on a air of grief so as not to dishonor those who've died. We don't have to put on an air of joy to make all around feel safe. We are who we are no matter what the calendar dictates.

After Eric died, I made it my mission that I would not let the timeliness of his hospitalization (the day after Thanksgiving, 7 years ago) and his death- Dec 16, 2003- affect my enjoyment of the holiday season. It was working.

I haven't had the time or energy to think that far ahead this year. But I do know that we celebrate these holidays for a reason. One that is much bigger than the deaths of my children. Thanksgiving is a way to remember the beginnings of this great country that allows me the freedoms I enjoy and take for granted. Freedom to worship my God and to live to Blog about it.

Christmas is at the right time for the Benton Family. What better way to remember why we have Joy and Hope? We celebrate the birth of the WHOLE reason that I can get out of bed in the morning and face the day. The WHOLE reason that I can deal with my pain and shoulder that of our bugs.

Last year we knew our sweet baby girl would die sooner than we wanted. We hoped that she could recover. We pressed on with our traditions and balanced time with our four little ladybugs. It should have been a bad Thanksgiving. But how could it have been? Got to kiss my 4 sweet baby girls. I got to hang out with the love of my life too. Sure it's a haze, but I do remember those things. I am so thankful for that.

7 years ago- we did not know how our lives were about to change. We were caught up in hosting Thanksgiving and brining a bird. I had a pair a big blue eyes look at me with adoration. I heard Eric's belly laugh for the first time Thanksgiving night. Good memories I think.

Someday we will be over involved with the Holiday hoopla and get all excited and bent out of shape about the dumb things that annoy us all. This year we will take a step back and just let it be and see what forms out of the shadows of our experiences, knowing full well God is walking us down that path and is casting the light so we can have a shadow.

Blooms and Bugs

2010-11-17T07:40:00.003-05:00

The big bugs are 6. I can hardly believe where the time went. I look at how much they've changed and grown since the first time I saw them, 6 weeks before their due date and only 5 pounds 1 ounce and 4 pounds 9 ounces. I am in awe.

In all honesty, their birthday was bad. They were both so sad the whole day and the days leading up to it. Last year, Ava went to the hospital on their 5th birthday. On the Sunday before their birthday I talked with Allan about a new approach. When dealing with tough issues I am from the "let them approach it with you" school of thought. We were all going down hill fast. Then I realized, if Allan and I are feeling this way and are taken aback by the root of the emotion, how the heck would the buggie boos be able to identify what is happening in their little minds?

So we had a family meeting at lunch. We were talking about what traditions are in the days preceding, so we continued on the theme. We have bookmarks in our memory about what happened last year, we all do. Right now through the end of the year, all those bookmarks are in pages of not great images of Ava, us not being there for them, others caring for them, and for Allan and myself lots of negative flashbacks regarding her care by a few physicians. (We try to balance them out with the images of those who cared for her very well too, but the bad sometimes takes over). We talked about how hard this is for us as well as them. We talked about how OK it is to feel all the jumbled up things we are feeling inside. We remembered that even during the bad times of Ava in the hospital, we have some precious memories of her too.

Armed with that knowledge- we muddled through the first marker of what will most likely be a rocky time in the Benton house. We tried to have fun together. We went out to lunch and they got free dessert and a song. I just cried because I was not home last year to sing to them. I cried because they were so sad during the song. I cried because they were there, with me and they made it another year. I peered their image in the rear view mirror and saw the long faces. Alexa simply stated, "We're having a hard time, Mom." So we just made a 4 Benton pile on the couch and snuggled in front of the TV for an hour. Megan and Mrs. B coming over to give love and Daddy coming home early to go watch them in gymnastics class helped turn the day around.

After they went to bed, I hit one of the lowest lows I've had in quite a long time. I could not feel how awful I felt. I couldn't put words to it. I knew that there was no possible way I could make it through the end of the year. All forward just seemed black. I asked Allan what he does if and when he gets that way. He answered, "I think of all the good things". Honestly, I could not think of a good thing. All my good things were over shadowed by a black cloud of grief too.

I sometimes wonder how anyone can understand the horrific grief we feel. The 2 cards we get from the hospital offering condolences, and offers to light a candle. The two letters from the cemetery wanting to know if I want to put a wreath on the graves of my 2 babies I will never hold here again. The two letters from the funeral home wanting to know if I want to light a candle. I really don't want to do any of it EVER. I just want them. I just want a baby to hold and love. I want my bugs to not be so sad. And I really really wish that we weren't called to the Joy-Hope Foundation for I wish that there was not a need to help those who truly do understand.

My bugs are all dealing in their own way and somewhat the same as even Allan and me. They don't understand. They are hurt that "everyone else" gets to have a baby to love and we can't. We write letters to Ava, we write down anything we remember about her. We ask poignant questions. We snuggle. We pray.

I pulled myself up by me bootstraps and fed off of Allan's determination to let them have a good day at their party. We talked about the outside games and if they wanted it to be the same as last year. Emily told me that it would help her. They did have a really good time, tempered with a couple emotional outbursts and sad faces. Alexa's theme choice was interwoven with Ava which proved to be hard when Teddy's image had to be cut so we could serve the cake. The Happy Birthday song was sad, because last party, Ava was there to help "sing". Over all though they have happy memories.

The bugs and I talked that the happy memories will help next year. Yet it's OK if some hard stuff about Ava pops ups, even when they are 80. It's a big deal I tell them. They were afraid of turning 6 because they didn't want to get further away from Ava. We decided that she is always in our hearts.

We've had frost a few times. My former single stem yellow rose in the front now boasts new growth and 2 buds. At Emily and Alexa's party, we all found ladybugs on our legs, backs, necks. In the car yesterday they asked why there were so many ladybugs at the party and none now. "Because God loves you so much and knew you were having a hard time, He gave you ladybugs." Then we imagined all that happens in the world in a day. We are that important and that loved that He just gives us some bugs and blooms as a reminder of who is Sovereign. As a reminder of how we are not forgotten, nor are we a lone. He compels friends to tell us that we were prayed for because they felt compelled to, without the foreknowledge that we were a drowning bunch. He allows us to feel that blackness, so we can move to the light. Sometimes it's a slow process, but the process is the most important part of the route.

So we enter the 6th year, full of grief but in the process of healing. With a realization that we are on the horizon of big emotions of the everyday kid who isn't focusing on the death of a sibling. (You know- he called me "stupid and dude and batman in gym class). With Him, even if there are times that we don't think we can feel His presence, we pull it all together.

When Teddy Bears and Sea Horses Collide

2010-11-03T15:12:00.003-04:00

I can't believe that my big bugs are going to be 6 next week. We are in the middle of planning their party. One that I hope will help fill their minds with positive memories in comparison to last years birthday. I know that I can't take the memory of their sister going to the hospital on their 5th birthday away from them. Yet I still want them to feel extra special.

I can't express how grateful I am to at least have them to hug and love on their birthday. Sometimes I can't believe that I get to keep them. Of course then there are THOSE days.... I struggle with how I waffle between feeling amazingly blessed by being able to earthly Mommy my three living bugs and how robbed and angry I feel that I have 2 not here. Then I get mad that others get to have "another" baby. Like I'm not good enough. Then I see my girls and feel guilty that I ever think that way.

I don't want them ever to not feel like they are enough. They are so wonderful and make our family what it is. I grapple with what I feel- my joy and love for them are separate from the loss and emptiness I feel without Eric and Ava. They know that it is what it is. I try not to put on them a need to fill any voids I have. I worry about that.

There are so many people that talk about wishing they were five when all they had to worry about was what to watch on TV and what to color. I would give anything for my five year olds, soon to be six, to have that be the awareness level in their lives. Heck , I wish it was my awareness level too.

So for their birthday (s) I go over the top with a party, probably gifts too. Maybe it's my way to celebrate what I have and who they are. I used to think that I wouldn't be the 'let's have a party every year' type Mom. Here we are, having one every year. The lives of my children are worth my celebration. We all survived this year. We have each other to hold on to. I think that calls for a party.

Of course, it's going to be an "Under the Sea/ Teddy Bear Picnic" party. Which leaves me to wonder how that will work. But that's OK. I'll probably figure it out the night before the party anyway.

For now I think of all they accomplished in the the last year. I can say that I am one proud and blessed Mommy.

Trick or Treat

2010-11-02T06:39:00.003-04:00

For Halloween we had an Angel, a Kitty and a "Flamingo" Dancer. We were joined by Cleopatra, a Pilgrim and Hermonie. (Honestly I don't care about Harry Potter, so I don't know the name. What I do know is that you better not tell my niece that she was Harry Potter. She REALLY didn't appreciate it. Did you know Harry wore glasses? Her character does NOT.)

We had our ultra healthy Halloween dinner- baked potato soup and hot dogs. We went to every house that had a porch light on. We celebrated my sister in laws birthday with cake and presents. We gave everyone their 2 pieces of candy, shoved them off to bed, sorted the candy and had our 2 pieces as well.

The kids had a great time. I hope my sister in law had a good birthday. I know that my brother did not have a good time as he slept on the couch and tried not to infect all of us with his mysterious hot fever.

I can say that I did it. I find I retreat and become apathetic when I don't want to face something. Halloween, as it turns out to be, is one of the first "marks" in a string of crap that the sentence "last year" begins with. I am starting to notice that talk of birthdays, turkey and that guy in the red suit are becoming unavoidable.

My matching bugs will be 6 in a week. I have so many mixed emotions about that. I was realizing yesterday that at least I get to hug them on their birthday. I am thrilled about that. This birthday is highlighting how much I hate that I missed their birthday last year. They talk about their dinner and what they got. If I was around for some of it, it's all gone. That just makes me so mad. The reason I wasn't home makes me pretty mad too.

I struggle with how to embrace all the festivities on the horizon. How to make them fun and enjoyable for the bugs. How to make them feel special for us as a family. Instead I just remember all the horrible things my baby endured and the time we were trapped in the hospital with her. My mind is filled with how crappy the doctors were to her. And how I have trouble making them hear me about how you treat a patient. Seriously, I can get lost in that. It would only take 2 seconds for me to spiral down that emotionally difficult and dark path.

I think of my Angel, Kitty and "Flamingo" dancer and their smiles that brighten the night. I hold on a little tighter. While I may start to boil on the inside, the heat is turned down to a simmer. I put one foot in front of the other and my hot angry tears can give way to the warmth of love I feel for my bugs. It doesn't fix it, but it helps and sometimes just that is what we need.

Race Day

2010-10-26T06:32:00.002-04:00

Saturday The Joy-Hope Foundation debuted with a 5k Run/Walk. We were so excited to have a great turnout. There were 275 registered racers and at least 300 turnout for the overall event. It was so amazing to see the whole vision I had come together. We were able to raise over $11,300 for our efforts as well!

There was no way that this event could have been pulled off if it weren't for the 30 volunteers that day and leading up to that day. That was one of my favorite parts. It really blew Allan and myself away. We could not believe that there were so many people willing to work their tails off for our foundation. So very cool indeed.

As we were cleaning up, the niece of one of the volunteers found a bright red ladybug on her leg. Perfect. I showed my bugs, they were delighted. That was so very special.

This race was held the weekend of the Anniversary of Ava's infant dedication. Not intentional, but that is when it was. As a fatter of fact it was the Anniversary of Eric's as well. This is when Allan and I promised to put God's Plan for our children ahead of our own. What ever it may be.

I remember how she was not having a great day that morning and I wondered if I was going to need to take her to the hospital instead of the church. I felt sick to my stomach. Then she perked up and did great. We came home and had a huge party. We were celebrating Emily and Alexa's 5Th birthday and Ava's dedication. Although the party was a few weeks before their Birthday, they insisted that they share their special day with Ava. They still talk about how important that is to them. Who knew that a short 12 days later she would go to the hospital?

For the all of our children's infant dedication's my Mom makes a cake. She usually picks the scripture for the cake. It represents each child's theme, so to speak. She's really good at that by the way, hitting the nail in the head each time. For Ava it was a team effort. We settled on Isaiah 40: 29-31: "He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

I could write a whole paper on the power that these words have for me right now. In this moment. In light of Ava, the Joy-Hope Foundation, Eric, parenting, grieving, holding Ava's hand at her bedside and being amazed by her inner strength and tenacity, having a 5K and running one for the first time in my life.

Ava's name means bird. I remember wondering why God wanted me to name my baby bird. It's not so glamorous you know.

As you can well imagine, race day was very emotional for me. To hear my husband stand before all of those people, some who came for the sport and most who came to support the vision of the Joy-Hope Foundation, and tell who we are, why we are hear, and what we've lost was surreal. We had a germ of an idea 11 1/2 months ago. Here it is. Where do we go with it now?

My questions are numerous as to what the next steps are and the "how's" of those steps. My mind was full on the way home of those things. Plus we were flat out exhausted, physically, emotionally, mentally. As we drove down route one south, I saw a Bald Eagle soaring, effortlessly, majestically, right outside my car window.

The Ladybug was for my bugs, the Eagle was for us.

Endurance

2010-10-20T07:38:00.002-04:00

Planning and Training to run the Have Joy. Spread Hope. 5K on Saturday is teaching me a lesson in endurance.

You have a deadline. You have tasks that must be completed before the date. There are your regular responsibilities and the pop up surprises along the way. There is always a snafu, you can count on that.

To finish you have to bear down, set your mind to it and pace yourself. If you go out too fast, you won't be able to sustain until the end.

I am finding that there are times I need to step back and take a break. I need to recharge and make my bugs the priority. Not the training schedule or the 5K. Not my job. My family.

In the middle of the chaos of life I am reminded not to loose sight of the 3 little goals who are usually right on top of me or under my feet.

Strength and Energy

2010-10-12T06:53:00.004-04:00

Ever have a day where you sit down to do something at the computer, get up and hour later and realize that you never accomplished your original intent? There you go. That is why the Blog has been silent.

I always knew I wasn't Super Woman. When I was 5 I knew I was Wonder Woman. I had the underoos to prove it too. Now 30+ years later, no super powers and sadly, no invisible jet.

There seems to be a new rhythm in the house these days. There is a lot of missing Ava and play about death. The heaviness of grief is not there. Last week I felt it creep in for me personally. I knew what it was and was so disappointed that it was coming back for a few days. I rather enjoy grieving with out that heavy laden feeling. Especially when there is so many tasks to accomplish in a day right now.

The bugs are all about making sense out of Ava being gone. They won't ever make sense out of it, but they try to wrap their little minds around it to the best of their abilities. After a week of Lain playing "I have to hold my baby because she is going to die soon", she told her daddy, "I'm tired of Ava dying and going to Heaven and I'm tired of Ava being sick."

Us too, Ladybug. Us too.

Layer these emotions and thoughts with daily living- laundry (always there, am I right ladies?), meals, groceries, cleaning, bills. Add bath time, snuggle time, play time, discipline time the mitigation of the emotions of 3 ladybugs (hmmm maybe Daddy is secretly happy about the mandatory OT). Add 16 hrs/week for work, homeschooling and the Joy-Hope Foundation. Sprinkled with a training program to run the Inaugural 5K which is in 11(GULP) days. The cherry on top? Things I like to call "mini commitments"- you know the ones that would usually consume you but since you are so busy they become items to check off the list. Season the schedule with post season baseball where the two house favorites are making a run the the ring. As it simmers the smells of fall and the annual events bring us right back to a time when Ava "was here". When she "came with us" to what ever event we are attending at the time.

Welcome to life at ours house. (OK, Lain doesn't say that anymore, but I love it so I pretend she still does).

I find myself in the middle of all of these things to do, that need to be done, and I want to get done. Oddly enough, they are being attended to. Some more than others, depending on the day. Some days we feel the emotions of our loss bubble to the surface so we stir and turn down the heat so it doesn't boil over and make a mess out of everything. Other times we let everything else go so they can boil over and see what mess there is to clean up.

As I was running the other morning I realized that there is no way that I can do all that is on my plate right now. Yet I have energy. I have drive. I have a team of people who God put in my path that I could not do this without. My ability is not my own.

He is orchestrating all that is happening in my life. I have energy and stamina because of Him. Wisdom? Him. Desire and Drive? Him. 3 living Ladybugs? Yup. Him. A wonderful teammate (except in baseball)? You got it. He did that too.

My life and my commitments are for Him and because of Him. The Joy-Hope Foundation is His. We are just simply obeying. It's not so simple when you are tired and out of juice. But then He propels us on to the next step. Then "Oh look here we are now".

It's quite a ride. I am happy to be on it. I will also be happy to have a bit a of a reprieve after the 5K. I can't wait to see how it will all turn out and how it will come together. This alone is amazing to watch unfold. It's such a neat way for me to see who really is in Charge and how we are all instruments for His plan.

Although I once REALLY REALLY believed I was Wonder Woman, and dabbled with the notion of being Superwoman I know that I am just a women standing is the arms of her Lord, putting one foot in front of the other, learning to use my energy for those who can't.

Check out the Joy-Hope Website! www.joyhopefoundation.com

Check ups

2010-09-29T16:20:00.002-04:00

Emily and Alexa had their annual checkups today. Go figure they are the same size. (Had their feet measured for shoes today too. Same.)

Their exams were great, but Emmy didn't do so well on her hearing screen in her right ear. I felt like I was going to loose it, scream, throw up , cry all of the above. The nurse off the cuff mentioned that it was that way, but it could be wax. Like it's no issue. HELLLOOOOOO? What is the thing that I am most afraid of.

So I tried to be patient and wait for the exam. I tried to encourage the kids and be present for the questions. I'm thinking, "look in her ears, look in her ears already." No wax. I'm thinking, of course not. Why would there be?

I told the doctor that Emmy has a cold and that could be why. He did see that she was congested when he checked her nose. So they would do a repeat screen and a tympanogram neither of which I care to ever hear the words of again. The pediatrician did his best to give me the "don't worry until we know stuff shpeal". He leaves. We wait for the nurse.

My sweet baby girl looks at Alexa and says, "Alexa, I have to have another hearing test and you don't because the first time I couldn't hear since the thing kept falling out of my ear."

AAHHHHHHHHHHHHHHHHHHHHHHHHHH!

I asked Emmy why she didn't tell the nurse. "I didn't want to interrupt the test."

She takes a repeat, the ear piece is on tight. She passes the test and the tympanogram shows that there is some fluid behind her ear.

Oh how I prayed that one of those test would have those results for Eric or Ava. I didn't think I would get my wish this time either.

My emotions are all jumbled up right now. But I am so glad that my bug is OK. So is Alexa who was a mess while she waited for her sister).

Running

2010-09-22T07:15:00.002-04:00

The Eric and Ava Benton Joy-Hope Foundation's 5K is 4 1/2 weeks away. It's all starting to come together, and we are all just so excited to debut our Foundation and raise lots of money to support those who grieve.

I started training for the run in August. I took 2 full weeks off - one because I forgot my sneakers while we were on vacation and 1 because I hurt my knee. So now I have three weeks of training left to see if I can make that distance.

Honestly, I have no idea if I can. I want to, so I suppose that is half the battle. Will the walkers pass me? Most likely. But this is not to win. It's for me. I never do things just for me, but I am and it feels good.

There are so many side benefits that I did not foresee occurring. I have better days, emotionally, when I run. It seems that the endorphins produced and the sweat poured out helps me to pound away at all the crappy life circumstances I've endured in the past 8 years.

I have more energy for our bugs. I like that. Especially since 2 bugs couldn't produce energy. I love that by pushing myself and expending mine, I have extra to share with those I love the most.

So far, I've lost about 12 pounds! I love this. I had 5 babies in just under 6 years, all by c/s. I looked it. When we go out I have 2 nearly 6 year olds and a 3 1/2 year old. I don't have the 7 year old and the 13 month old to show why I looked the way I did. This is a battle for me and always hurt my heart in a deep and strange way. To see that I am taking shape and look a lot less like "letting myself go" that burden I've been lugging around is starting to fall away.

Who knew that I would be so into this. I am and I love it.

Our 5K theme is "Use your Energy for those who can't". You know what, whether you are afflicted with mitochondrial disease or you are dealing with grief, you don't have energy. It is awesome to see that even though my children aren't with me on earth, I can still do this for them and me too!

Illness

2010-09-17T06:53:00.004-04:00

There's been some postings on FB about sick kids. It got me thinking. I am always on guard when the bugs get sick. My automatic reaction is to worry. Today I realized that it's not out of a typical "Mommy Worry", but it comes from Eric.

He got a cold in November of 2003. We gave him medicine prescribed by our doctor. A few says later our baby that was recently diagnosed with severe-profound hearing loss, lost skills and tone. Never did he loose any personality. That always sparkled through his wide blue eyes and pudgy little cheeks. No matter what was going on with him, there it was. If you were a blond nurse in the PICU, he would perk up.

Which was really funny. Our geneticist at the time, a man whom I completely respect and admire, came to visit Eric. He had since transferred the case to a Mito Geneticist who was not with the Hospital by the time Ava was born. He was visiting because he simply cared. He did a little assessment too. Eric couldn't have cared less. Then his nurse came in. He perked up, eyes twinkled and smiled. He tracked her too. The doctor said, "oh I see you don't care if it's an old guy like me." I guess you could say he was all boy.

Every time the bugs get sick, the deflate. Their personalities are muffled. I long for the time that they can shake it off and I get to see them again. It feels like forever and I am so not patient about waiting it out. (Why would I be, I'm not really that patient anyway. Ask Alla, I'm sure he'll tell you.)

Whenever they are on the mend, my stress level goes down and my heart cries out. I worry that the day before the illness struck will be the last time I saw them how they are. I know the older that they get the more relaxed about it I get. When the illness lasts longer than I think it should, I start to unravel.

I know that it's usually just a cold, ear infection, sinus infection or GI thing. But in those moments, I wonder if my bugs' metabolic process can recover from what ales them.

Ava got a slight cold in November too. When you have a "broken" metabolic system or a fragile one an illness can rock your world.

A Heart for Giving

2010-09-12T00:15:00.004-04:00

Every now and again your kids do something that amazes you more than you thought they could. This week, Emmy and Lexa each had a moment like that. It was simple and humble, but showed me their hearts.

We came home from church last Sunday to a lemonade stand in our neighborhood. In hoping to see what the hub-bub was about, I read the sign to the bugs. The stand was set up by the cousins of a baby we have been praying for and I had the honor to make bracelets for. Her name is Haydon. She has Spinal Muscular Atrophy. Her life and what she can do despite her limitations is a miracle. Alexa squealed and could hardly wait to get in the house and change into "play clothes". She kept saying how we had to hurry so we could help Haydon. She grabbed her wallet so she could buy her lemonade with her own money. "We have to help Haydon". She repeated in her 5 year old way.

Later in the week we were talking about how apples grow in school. We cut an apple open to see the star and the seeds. We talked about how we eat the fleshy part and the seeds can grow into apple trees. Emmy's eyes got wide and twinkled. In her unassuming Emmy way she said, "Mommy! I know maybe we can send a bunch of apples to Haiti. Then they will have food to eat and they can plant the seeds and grow trees! Then they will always have some food!"

For each bug I thought, "Wow, I get to be YOUR Mommy." There really can't be anything better than that.

It sucks that we had to loose Ava. If we never had her or if she didn't have mitochondrial disease our family would never have experienced the love and support we did. If that didn't happen, our bugs would never know, first hand, how important it is to help those in need, to show God's love through community, to want to support others and give.

There can always be beauty among those ashes.

New Normals

2010-09-08T08:10:00.003-04:00

For days now I've been sitting down to blog and nothing. Either I have to go do the next thing, I'm way too tired to think straight, or there are no words ready to come to the page.

Our days are very full and busy. SO much so I was informed that we are now out of coffee and are on our emergency reserves (you know the kind that you collect from various gifts and functions that would not serve well on a daily basis).

Today I sit to blog, drinking coffee for the pure necessity of the caffeine not the enjoyment and satisfaction of the cup.

Last week we started to Home school the bigger bugs and let the little one think she's being home schooled as well. It's an adjustment for all of us, but I am surprised to see that Elaina is having the biggest adjustment with it right now. I am not shocked, just surprised that it's her to the biggest extent.

I am pleasantly surprised. Like most things for our family right now Allan and I are on automatic pilot. We are exploring new ideas because we don't have the energy to argue with God as to why we can't do what He asks us to do. I've been interested to see how Homeschooling would play out not without some trepidation. To sit and see them learn. To see that clouded over face of confusion turn to a twinkle, squeal and a smile is very rewarding. I love that I get to be the one who has that front row seat.

One thing that I did not get a full handle on was that this time I have with my girls is found time. On Face Book I see that all these other Mom's are saying goodbye to their kids for the day with a healthy mixture of happiness and a twinge of sad. For some it's getting back into routine, others it's the beginning of a new normal. I realized that I am not ready to miss any more of my kids right now. I know with school you will get them back at the end of the day, but the empty house on Thursdays when they are at our Home school group all day, is a bit much for me. I had no idea.

I know this is a powerful feeling and I am keeping it in check. I am not Homeschooling because I do not want to let my children go. I f Homeschooling becomes out of that need, it will be time to enroll. This year is gonna be tough on the girls, they need to be able to learn all they can in an environment that is conducive to dealing with all that is on their plates. Plus, they really love it.

They also seem to have a busy schedule. They take a combined gymnastics and ballet class and in a couple weeks they start piano lessons. Thinking is changing, imaginations are booming and the friendship in their sisterhood is what I've always prayed that my children could have. These are times that I am finding that I do and will treasure.

We are also all a buzz trying to secure sponsorship for the Have Joy. Spread Hope. Inaugural 5K in Oct. We are all excited to see how this event comes together and debut our vision for all to see. Humbly, we can not wait to bless others the way the community blessed us. It is such an amazing honor.

I've been training to run this 5K. This is a big deal or me. I never thought I could do it, and now I am half way. However, while Apple picking the other day I pulled something in my knee. For now I'm on the DL. Not very patiently I might add. I began to train for my babies who couldn't even breath on their own. They didn't produce enough energy to sustain life. I want to train my body to run and use energy for them. Next thing you know, I think I like it. I look forward to getting out there and pushing myself in a productive way. I am praying that my knee will feel better so I can get back out there and I can run this 5K. Besides, I want to buy new workout clothes!

With the other short term commitments and the birthdays of Eric and Ava, my mind has been swirling. We've cleaned out our baby and little girl stuff. A difficult task in it's own right for any sentimental mom. Now there are Fall like smells and the memories flood back of their short little lives. The other day, for the first time in 5 years, I saw a baby that looked like Eric. It was totally unexpected. Then it felt good that I could cry about JUST him for a minute. I don't know if that makes any sense.

These last couple days I've been feeling unsettled in my soul. I'm not angry or dealing with that hormone surge like feeling. I usually know why. Right now I don't. So I steal a couple minutes and then off we go. Trying to balance living is tricky, but God is in control so I actually don't feel out of control. That is a nice feeling.

Birthday's

2010-08-22T22:24:00.004-04:00

So much in such a short time. We were on vacation last week. No Internet. No TV. It was nice. Allan and I would joke that we had nothing to talk about.

A week ago on the 13th we observed what would have been Ava's first birthday. We decided to get yellow balloons in her honor. I think it will be a tradition. It was a really hard day. A little harder than I imagined it would have been. You cry, you move on. You cry again, you keep going.

On the 14th we left for vacation. The bugs wanted to see Ava and Eric's grave for their birthdays. We decided we would go when Daddy could come too. It's not something I wanted to do, but I told Emily that I would go if she needed to go and I understand that. I told her that Daddy and I practiced going to Eric's grave while the matching bugs were babies so that we would be ready for when they wanted to go. She hugged me.

So Saturday was the day. In the furry of packing and forgetting stuff we made our way to the cemetery. This was one visit I've been dreading since Ava was in the hospital. To see the marker for your child and then to have to imagine a second marker with a second child next to it haunted me. To have to see it tormented me. Of course we couldn't find it right away. Then when we did I was shocked to see that the markers were vertically aligned, not horizontally. For some dumb reason, that made me feel better. As it turned out it wasn't as horrific as I thought.

Monday the 16th would have been Eric's 7th Birthday. What is so special about him (there are many many things actually) is that he made my dreams come true. He made me a Mommy. I love that that distinction is his and his alone. For his Birthday I usually like to take the girls on a fun adventure nothing too fancy, just different. This year we were on vacation so we took advantage of the day and rode a Steam train to a Riverboat and back again. It was nice. I bought an ornament for the Christmas tree.

What I thought about a lot on vacation was that as a parent you love to talk about how your children came into your lives. The First birthday is huge for remembering and encoding that amazing moment in your life when you became a parent to your child. When your child is no longer with you for that birthday or any others you feel like you can't recognize the day. You can't talk about the birth story. You can't remember all the joy and expectations. It's hard for the family to do, but it just makes those who listen uncomfortable.

I have so many amazing memories associated with the births of all my babies. I only have three that I feel comfortable telling about. But there were two others who I will always know about and who changed my life, profoundly. I don't want their stories to be taboo.

It's so strange. We treasure the memories of those who die in the "right order". We get together after an internment to "remember". But when it's not in the "right order" and your child dies first. The topic becomes trepidatious and sometimes taboo. But we love our kids, living or not, and we want to remember too. I think that it's harder to hide behind what we perceive what society dictates as "acceptable". It just makes the bereaved feel more excluded. I hope that through Ava and Eric we will feel more comfortable with our selves and with our emotions following "premature" death. If we remove the "supposed to's" and the "shouldn't have beens" then we can see that death stinks, but it happens to us all.

Have Joy. Spread Hope.

2010-08-10T23:06:00.002-04:00

It looks as if we have ourselves a Foundation!!!

The Eric and Ava Benton Joy-Hope Foundation will be holding it's kickoff event on Saturday October 23, 2010.

The Joy-Hope Foundation will provide families who are grieving the loss of their child to illness with a "New Memory Making Getaway" and support Mitochondrial Disease Research. After Ava's death friends joined together to raise funds to send our family to Disney. We found the "break" to be a huge blessing for our family and are honored to be able to offer that to others.

We will be hosting the Have Joy. Spread Hope. Inaugural 5K Run/Walk Kids Fun Run.

The race Starts and Finishes at Brandywine Valley Baptist Church located at 7 Mt Lebanon Rd, Wilmington, DE. Registration begins a 9am race starts at 10am. The race is EdJaH Chip timed, a division of races2run.

Entrance into the race is $18 if you register by Oct 21 and $22 the day of the race. A family of 4 can register for $60 and Kids under 18 can register for $15 by Oct 21 and $22 the day of the race. The Kids Fun Run is free, but the children are encouraged to obtain sponsorship. The child who raises the most money will receive a prize.

There will be t-shirts for all who are pre-registered and there will be merchandise awards for the Top Male and Female finisher, the top three in 10 year age categories and the top 3 walkers.

There will be post race refreshments provided for all as well!

Online Registration is available through http://www.races2run.com/
The direct link is:
http://www.races2run/2010/2010details/10-2010details.htm#102310-Joy

If you are not a racer or walker but would like to help you may send a donation to "The Joy-Hope Foundation" 220 Fieldstone Crossing Dr, Bear De 19701.

We will post when the Joy-Hope Foundation website is up and running! http://www.joyhopefoundation.com/ if you would like to peek at our logo.

We are a not for profit foundation, who is pending IRS approval. Donations are tax deductible to the extent which is allowable by law.

Peachy

2010-08-09T20:51:00.002-04:00

I started to train to run a 5K. The first 5k I will run will be for the Joy-Hope Foundation. It will be in October and once there is an online registration (by the end of the week) I will tell you all the details. For now I am lost in planning the event, getting the Foundation "live" so to speak and getting ready for our vacation in a few days.

So because I seem to have so much free time, what did I do today, while Lain and I are sick? Yup, we met my Mom and Dad and picked peaches. In 35 minutes the 6 of us picked 212 pounds of peaches. I think Lain was responsible for 50 all by herself. So now I get to peel and can peaches. Oh and I think I'm out of lids.

Crazy? Yes, but last year we did not get to pick peaches due to the arrival of little miss Ava. So I needed to do that this year. So we did. Now I won't sleep. Especially since I'm blogging.

Today I walked in after my run to find Allan trapped under drippy and smiley Elaina. It was 6:20am. There went my quite time. We drew pictures and cuddled. It was really nice. Lain drew a picture of 6 people- biggest to littlest- 5 holding hands with lines around the edges. She told me ," Mommy this is me, this is Emmy, this is Lexa, this is Eric, this is Ava and the biggest one is you. See we are all in a Stadium and all your children are holding hands with you."

Tonight was the first time in MONTHS that Lain asked me, "Mommy, why did Ava die and go to Heaven?"

Emily, on the other hand, is doing much much better. Thank you for all your prayers for her.

Lex is laying low right now, but she really was grieving the hardest early on.

Here's the thing. I don't think it's fair that I get to be PMS and have Ava's birthday on Friday. I think that is mean.

Questions and Answers

2010-08-03T20:35:00.002-04:00

We are having a blast at Saddle Ridge Ranch I tell you. Although on the way home today Emily asked, "But why do they want us to get up sooo early?"

I had no answer.

I did have an answer for Alexa's two questions tonight. She cuddled right up to me and said, "Mommy, I hope that when I grow up I don't have babies that die. But if I do, will you pray for me?"

I scooped her up (which is getting hard to do with my leggy nearly 6 year old) and told her that I am already praying that that doesn't happen. I will pray for her and I will be right there to help her. I also told her that is why we are seeking testing so we can determine if the bugs need to worry about what Eric and Ava had.

Our devotion tonight was talking about how God created a bug to be a bug and you to be you. It was a nice reminder that He is in charge and Eric and Ava were created by Him and are not a broken mistake. Sometimes I need to remember that.

Alexa's other question was at story time- Bearstein Bears Go to School. They walk to school on the last page. But they take the bus earlier in the book. She wanted to know why they were walking to school. In a moment of what I can only consider as Mommy Brilliance I said, "To reduce their carbon footprint. Now get in bed so I can tuck you in."

So we are plugging on. They are learning to be H-A-P-P-Y because God loves them. I am trying to keep up with the pace of a busy snack kitchen. I guess I should take a moment and know that I can be H-A-P-P-Y because God loves me too.

August

2010-08-02T00:36:00.003-04:00

I was looking at some pictures of Ava right after she was born. I couldn't help but think about how perfect she was and yet so horribly broken. Although we thought she was funny looking after birth, she didn't look terminal.

This week the bugs flit off to Vacation Bible School. This is Lain's first year of being able to go. She is beside herself. I was listing all the things she will do, but I started by saying, "Are you going to...." She looked at me and said, "I don't know, am I?" I told her yes they do do all those things at VBS. Her eyes sparkled. Then Emmy told her that snack is "not just, like goldfish...but it is really cool." I told her that she is going to be able to sing with her class for the Mommy's and Daddy's on Thursday night. She could hardly contain herself.

Last year for VBS I kept thinking that if I made it through that week I would be home free. All of our babies were early and I was getting close to the danger zone. But I wanted the bugs to go, so I kept thinking that once we cleared the week, we would be ready. We made it through the week last year and Ava came the next Thursday. It was my last year for just Mommy and Laina time. I was bummed about that, but comforted by the fact that I'd have an opportunity to have alone time with Ava. Something I knew would be next to impossible to come by.

So here we are a year later. In all honesty I was kind of hoping Lain wouldn't potty train until after VBS so I wouldn't have to let her go. I remember sending Emmy and Lexa when they were three and seeing how big they got that week. So this year, I'm gonna have a different week than I thought I would last year. I have to be ready for Lain to grow more and expand her horizons. I have to be ready for not having alone time with Ava.

I'm not ready for either really. This week marks the beginning of what will be a tough time for us. It's when the memories of when Ava and Eric were with us are the most vivid. Being in that time of year really does a lot to jar the memory. This is honestly what I've been dreading and here it is and I can't stop it.

Today in church I was thinking that I should try and turn this into a blessing that I can have all these memories flood back. I know that it is that way about Eric now. Like a breath of fresh air when I remember something I've either forgotten about or forgotten that I remembered. But in a 4 month life span those are few and far between.

The switch will flip, and the memories of Ava, while always cherished, are not going to come without a price. Sometimes I think I forget that she was real. I get so wound up in hearing her name and thinking about her at an arms length I forget HER. Then something jars my hardened mind. And bam there she is in it and she was real. I wonder if it's like that for the bugs too. I guess it's a way for us to keep moving on.

Ava's birthday is next week, Eric's three days later. I wonder how much I should bring that to mind for the bugs or if we should see where they take us.

Try it and See

2010-07-26T09:35:00.003-04:00

This weekend I got to sing on worship team for the first time since I was pregnant with Ava. I was so excited to go to rehearsal ( my favorite part). I feel like I can really open up and connect with God and the music. As we got into it I realized that that was not how this rehearsal was going to go. My mind became flooded with all that I've forgotten how to do. Simple things like repeats, codas and such. It was a reminder that there is a vast divide between before Ava and after. The brainpower that it takes to focus on a task like that felt daunting.

Then there were the lyrics. We were singing in one song about letting the blind see and the deaf hear. There are so many verses in the Bible about those things. That is what I prayed for for Ava. That she could hear.

So then in order to make it through I thought about the lyrics in the context of the song. We were singing about the blind seeing and deaf hearing not literally. It was about opening up the hearts, eyes and ears of those who do not know God or don't want to know Him. I thought, OK, so I can do this. Whew. Who knew that even singing the word "deaf" would be so hard.

Another song on the We sing that "death won't hurt me now" and "death where it thy sting?". I tried to think about it in the context of the song. Of course what it means is that we are Alive forever, through Christ and His Resurrection. There is no sting in death and it can't hurt us, because it is not the end. It's the beginning. While that brings comfort to know that MY death can't hurt me or sting me as I will be in Heaven. I realized that death for those who are still living has quite a sting. Anyone who has experienced loss knows that.

So, on the way home I decided that I wasn't ready to do this. How could I get up and sing those lyrics? How could I make it though? I was ready to run, hide and never come out. I know that "God is Good" but how can I sing that when I have a wall up for actually worshipping? I get to some level, but to cross that threshold and let the Spirit flow through me is too painful. Too poignant. I don't want to crumble while there are witnesses, of course.

Or is that the reason? I truly believe in the Goodness of God and His Divine plan. I know that what is happening in our family is for His purpose and to bring Glory to Him. I am a willing participate, really. His love for us is what is keeping us together. I get that. But to go to that place right now where the music can flow freely and to be caught up in that type of worship? Really? How do I let go? Letting go leads to uncertainty of my response, while knowing that for certain I will find more ugliness I have to deal with, uncover and grieve.

It takes strength, desire and a willingness to try. It also takes a kick in the pants. U2's "Where the Streets have no Name" becomes my mantra. I want to run, hide, tear down some walls. I want to be with God, but I want to hide behind my walls. If I didn't try. If I called and told the director that I couldn't do it, I would still be stuck behind my walls. Thrashing and trapped.

Freedom comes from letting go and allowing God to move.

I knew if i didn't try it and see, I would be disappointed with myself. So that's what I did. I got up and left the house Sunday morning at 7:15 to make the half hour drive to church. I had no coffee (Allan forgot to turn the pot on and I didn't have time to brew it. I thought about filing for divorce, but I guess we have to exercise forgiveness on a daily basis), and no speaking voice thanks to my germ mongering bugs. Armed with a bottle of water, a sleepy mind and body I was off, mostly comatose.

I practiced. I envisioned a coughing fit so I could skip singing during the two services. I had very low expectations. I met my goal, I stood up there and I sang. All I wanted was to get through it. And I did.

Something transformed in the second service. My walls were crumbling and my guard was down. I was able to worship, not just sing. I got choked up, because the deaths of my children stings and hurts me and it's indescribable. On the flip side my mortality is not painful. It's welcome. God's love for me and you is indescribable and uncontainable too. That's worth the risk to try it and see.

Prayer

2010-07-23T10:15:00.002-04:00

If you would pray for Emily that would be great. She is super sad right now. It breaks our hearts to watch this. When Alexa and Elaina were going through their intense grieving phase were more numb than we are now. As hard as that was to witness and deal with, at least we were "padded". Now that we are able to think a bit past tomorrow, it makes it all the more poignant to watch her go through her steps.

The other thing is that I have to fight with my need to not want to watch it. This is Emily's storm and we have to ride it out with her while God navigates her ship.

She is so deep and compassionate. That is awesome, but on the flip side she feels things deeply and they tend to be a little locked tight. She is happy go lucky by nature and wants to see the good in her world. This is hard for her. To be so disappointed. She is recalling big events and has big questions. Some of which make me sad to hear since what we thought was a good decision, is hard for her today.

At the same time I think that there may be a certain level of "milking" it. I need wisdom to discern which is which so we can act accordingly. It's a fine fine line. One that we are walking as well when we are low on the patience and tolerance.

Cleanliness May Actually be Next to Godliness

2010-07-18T00:35:00.004-04:00

I knew it has been a long time since I posted, but had no idea how long it actually has been. Part of the reason for my silence is because we suddenly got busy in a good way. In the recent weeks I feel a bit of a reprieve from the looming cloud of grief. I see that the bugs are feeling that as well. We are transitioning, and that is a good thing.

Since my last post I have a couple bugs that are jumping into, head bobbing and taking some strokes in the pool without a life vest. I have a still very excited bug about being oh-fishally- big. I have a bug that can put ponytails in her dolls hair. I have a bug that learned to use the toaster. I have a bug that loves to get dressed by herself and a Mommy who lets her be ,mismatched and backwards as long as we aren't going out in public.

We've picked blueberries and strawberries, we are on a second planting of beans. We color and paint. We have a new front door and storm door. We bounced and slide at Pump it Up. We toured Herr's Chip Factory. We've celebrated the birth of our country. We ride bikes, splash in puddles. We got caught in a downpour.

I am now beginning to plan ahead, and it's not too overwhelming for me. The past is still muddy and long. My concept of time is still off, but I can see past the next minute.

The Joy-Hope Foundation is becoming more defined and solidified. We had a great time hosting Mom's Marketplace. Allan and I have been working a lot lately. We've gone out on a date and even watched a movie one night. I baked cookies, and made play dough.

Along with this the house is getting more organized, the bugs are becoming more polite and helpful. We are working on correcting bad habits that formed as a result of Mommy and Daddy having a lack of energy to follow through. We are talking more, cuddling more and trying to listen to the bugs' needs. You know we are becoming more "checked in" parents instead of "checked out".

I organized my pantry. It took a long time. I had to purge a lot of things in it. Staples I stocked up on at a good price so I could be creative with my Christmas baking, meals for the winter. A simple task became a project of purging. I slowly go through Ava's things, and have to step back. It's too overwhelming sometimes. When I enter that room, I know that there will be pain in purging. When you go to clean out your pantry, you aren't really expecting pain in purging. Really I love to throw things out and sort them. This time, I was faced with another reminder that our life stopped for a year. Crackers that were stale, chips that were old. Into the trash.

The thing is is that after the purging of the bad stuff comes the reorganized, restocked and fresh pantry. A pantry that is ready to accept a new challenge and not get bogged down by the build up. I look in it and see it as a metaphor for where I am right now. That is why I do all that we have been doing these last few weeks.

It's amazing to me. We were getting ready to spend the day at the beach on Thurs. I was remembering the sense of urgency I felt when we went down last year. I was in my third trimester with Ava. I felt like 'I'm not going to let this baby hold me back. I can do what I want because I, of course, am super mom!' I felt a sense of urgency to capture fun moment with the bugs before the baby was born and we were on hold for awhile. We thought about what it would be like the next summer with 4 kiddos on the beach. I was bound and determined that I would manage it and we would have fun.

Well, I did manage. We did have fun, but I didn't feel the sense of urgency to have a great time before my life was turned upside down. Instead I watched my bugs play on the beach and experience the world God created. I soaked up the beauty of the day. Then we came home and I opened up my pantry. I realized that we just need to be ready to accept what comes next and not be overwhelmed by the waves, in the ocean or of surplus expired crackers or from whatever shall come next.

On the Horizon

2010-07-02T12:22:00.002-04:00

What is that feeling? It's faint yet familiar. I remember it, like an old friend you reconnect with on Facebook after 20 years. Hazy memory, then memories flood back and the synapses firing on all cylinders.

Ahh, yes. It's EXCITEMENT. And it feels good. I hope it stays for awhile.

The Joy-Hope Foundation is well on it's way to going "live".

We are having a Christmas in July Mom's Marketplace on 7/10/10 from 9:30-12:30. Can't wait to highlight handcrafted items made by my friends, my family and myself. There will be Tupperware too! (If you want details, email me or check facebook).

Elaina is potty trained and not looking back.

Emily and Alexa are over their tummy bug and are helping out around the house. They constantly amaze me with their huge imaginations and compassionate hearts.

I think I'll ride this wave while I can.

Bedtime Bible Story

2010-06-29T11:09:00.004-04:00

Saturday night I was home alone with the bugs as Allan was out all day with friends. Even though Elaina was overtired and Emily was getting sick, we had a sweet Bible and Devotional time before bed.

The story was about Job. I've heard it a million times. I've read it all the way through a few. I've even read a personal account about a women who lost a child to Mitochondrial Disease (Holding On To Hope) and how Job relates to her life and understanding of God.

There we were all snuggled together and reading about Job in one of our Children's Bibles. (My First Study Bible- Tommy Nelson Books)

" Why Good People Suffer. I am Job. I loved God very much and always tried to please Him. God was good to me. He gave me a large family, a beautiful home, and many nice things. Then my problems began. I lost everything I had, even my family. My friends told me that God was punishing me. But I knew better. When you have trouble remember my story...and trust the Lord."

The title was "I'm Glad I didn't give up on God." In simple terms so kids can get it, and grown ups to, it went on to tell the story. One after another a messenger came to tell Job about overwhelming loss. Catastrophic, actually. His wife wanted Job to curse God and die. Job refused. He was tested by God. He remained faithful and persevered. He was Blessed over and over.

When we walk with God, life will never be peaches and cream and happy all the time. Living is hard. Earth is tough. There is joy to be found and happiness to be had. When God gives us Good we are so ready to praise His name. When the going gets tough, we've decided that He has turned His back on us. That He's Forsaken us. Yet the Bible says, " I will never leave you or forsake you."

When we walk through the fire, we are molded and changed. It takes heat to melt the hardness of our hearts. The ugliness of our souls. When we cool, we can have a beautiful luster, if we allow Him to work within us.

The "Think about This" section at the end read: "When good things happen to you, do you thank God? When bad things happen to you do you blame God? Job could have blamed God for all the bad things that happened to him. But he didn't. He loved God and Knew that God loved him, too. We should thank God for everything we have."

After Eric died, I became pregnant with twins. For a long time I thought it was because God was showing off to the medical world by saying, "Look, you think you know everything with all your research and knowledge, but here's some twins. I can do anything." Years later my Mom told me that God gave me twins because He loved me. Still brings me to tears when I think about it. I remember that He told me that someone else was supposed to join our family. Along came Elaina.

Eric and Ava were an expression of His love too. Through them I think I learned just how much a mother can love her children. And how free I am to love the bugs on earth.

Somehow we feel like we are entitled to happiness and an easy life. We aren't. Somehow we think that when God is in control of our lives the struggles are absolved. Not so.

I scares me to think about all we have left to loose on this earth. All the trouble that can come. Then I look and see all He's done for us even in the darkest times. Clearly I am not thrilled with the path He has lead us down. The thing is that He is leading and whether or not I am thrilled, angry, happy, or sad, He is in charge of it so I can deal with it. Sometimes it doesn't seem like it, but I know God has our best interests in mind. So I hang on to that as I watch my bugs stretch and change. I hang on to that as Allan and I do too.

It's Oh-Fish-al

2010-06-23T23:43:00.002-04:00

Well, I am here to tell you that the prayers are working. We are all a little more settled. Which is amazing since we've been really really hot this week. For the 3rd time in 6 weeks our A/C broke. It is now temporarily fixed. Unfortunately we need a new one. There is a laundry list of things we need to replace in this house. The problem is that we can't get to them b/c of the things that need help that we weren't expecting. I am trying not to let it set me off too much. Sometimes I am successful in that, sometimes not really. At least I'm trying.

Our big news is that little Miss Elaina Bug is OH-Fish-ally BIG! As Allan said she somehow decided that it was her idea and that was that. We are Oh-Fish-ally proud of her. She decided that now that she is big she can go to Emily and Alexa's Sunday school class and sit in the third row in the mini van with them. So cute. I won't lie and say that there isn't a little twinge when I think that I don't need to buy diapers, wipes and all that paraphernalia anymore. What Mommy doesn't look forward to that day, but feels sad that the baby is growing up? This is just one of those things where if it were 2008 I would be looking gleefully ahead to this step. In 2009 I would have been counting down to how many more kids I have left to train. In 2010 I am glad to be done and wish I still had more to go (well, sort of I really do think potty training is of Satan.)

Tomorrow we are having our first official Board meeting of the Eric and Ava Benton Joy-Hope Foundation. Not sure what emotion to assign to that (excited, nervous, bittersweet?).

I think now I am looking forward to stringing together a couple of less complicated days. That sounds good to me.

Free Fallin'?

2010-06-21T22:48:00.002-04:00

What a whirlwind week. There were so many good things wrapped inside it. A week ago we celebrated my birthday, then on Wed. Allan and I celebrated our 9th anniversary and of course Sunday was Father's Day. Friday marked 6 months since Ava died.

I have to tell you it's been really really really hard for me lately. I am hoping all the events of last week are the reason for the set backs. When you are sad and you have to face a day where you are expected to be happy the opposite happens. The fact that you are not in face happy is highlighted and in bold. But you have to try, you have kids. So you press on through the day, for them and hopefully for you too.

All that emotion has to go somewhere. It has to get out. So you crash. As you crash you think, OK maybe this will help so I can get out of the funk. Nope. Still need to crash. When you are at the end of your rope you wonder if everyone stopped praying for you. Where did all that lovely support and help go? You feel abandoned.

You get a text. You go shopping with some friends after the kids are in bed. You are no longer in free fall.

You see people at work. You check facebook. You hear that there are people out there praying and you have been relentlessly on their minds lately. You needed that.

Some days, weeks you need to crash. You NEED to fall apart. It's how you get rid of the cobwebs and keep going. Even when I wonder where everyone went. Where God went. I know that I need to feel what I'm feeling. It just hurts to do it. It aches so much. But I am not doing it alone. I know that God will never abandon me, no matter how mad or sad I get. He's right there. Allowing me to feel so that I can live and feel as the clouds dissipate.

I'm watching these same things happen with the bugs and Allan too. All 5 of us have hit a rough patch. We miss Ava. I am starting to realize that I miss 2 kids. Sometimes it's too much for me to handle and take. It's coming in dribs and drabs. As much as I can handle.

So if you wouldn't mind. We have much happening around here and we are needing a little extra prayer to stay strong and convicted in what God wants us to do. I am currently wanting to run, hide and play ostrich. I want it all to go away. I know that's not what we are called to do. But I am tired (exhausted actually) and frustrated with myself and my ability to Mommy and Wife and Amy. Truth? I am mad that I am in this situation and not patient with the process.

More later. I think I will go to bed at a reasonable hour tonight.

2010-06-11T12:47:00.003-04:00

The intellectual side of me knows that when kids start to misbehave then it's usually a symptom of something else going on. Either they don't feel well, or something is array in their minds/bodies. Or it's because they are not getting their needs met by their parents.

The problem is that once the cycle starts we start putting out fires and get sucked into reactive parenting, not proactive parenting. Guess where we wind up most of the time?

The other day I dropped what I was doing and decided to play with them. Then I had to extricate myself and make dinner for our sitter to put in the oven while I was at work. The bugs asked if I could come back an play. I told them that I'd love to, but I needed to get dinner made and ready for work. There may not be enough time.

As I was scurrying around the kitchen I overheard the bus saying, "Mommy hasn't played like that with us for long." Alexa then said, " That's because of Ava." They weren't manipulative or angry. Just talking.

I won't lie. It pierced me. I know it has not yet been 6 months since Ava died. But they don't understand why their Mommy is emotionally unavailable sometimes.

Here is the cycle: I have a good day. I need to get things around the house done. I get tired and the good day is gone. I hit a bad couple days and I walk around in circles overwhelmed by what needs to be done around the house or any progress I made is undone. I hit a good day.....

What I need to do is make sure that when I hit a good day, I play with the bugs. I enjoy them. I make them realize that no matter how much it stinks that their brother and sister are not with us we are here and we are important. I need to make them feel special. I love to feel special. They do too.

So I am trying to break the reactive parenting cycle that is so easy to fall in to, even when life is hunky dory. My bugs have always done better when I am on top of it. With God's grace I will be able to have moments, days and eventually be able to sustain being on "top of it".

Traffic Jam

2010-06-09T09:56:00.002-04:00

I can't believe how debilitating thoughts can be. My mind has been so consumed lately I feel like I am spinning my wheels. I have ideas about the Foundation, as well as a hefty to do list. There are book ideas and bracelets (which now include rings and necklaces). There are ideas about advocacy and support.

These all seem compartmentalized, but they really seem like they will link together under one umbrella The Joy-Hope Foundation. I really don't know the how's but I feel it. I go but gut a lot so I'm gonna keep on with this one.

Of course there are the basics of daily life- three little ones who seem to think that if I am sitting, they need to be on top of me and jockey for position. Laundry, food, housing projects, bills, yard work, shopping and little tiny pieces of EVERYTHING all over the house. Then there is the fun of summer to go out and snatch.

Each thing is all normal things of life. We paint pictures and objects. But when we do it I ask a question like,"how many kids do I have?" as I try to get the right number of plates for palette making. Three little ones shout, "THREE!" One little bug says, "Mommy, but you used to have 5." I say, "But it's OK to have 3 right now." And a painting we will go.

When my mind is so crammed, I find that I literally walk in circles. Stop halfway through something and take a break. Then I get annoyed with myself and my abilities to complete anything. I take a step back. I pray. I ash God for His timing and patience while I wait.

I then find that I have to keep it moving. Something happens and a string of half thoughts/ideas gets pulled together and we are off and running with all lanes open. Sometimes the speed limit is slower than others. Sometimes I wish the posted limit would be slower. What we are setting out to do is big. It's hard not to see how it's going to form, knowing that it is.

All of it is in God's timing. If I know anything my timing is not remotely correct and His is perfect.

Deleting Cookies

2010-06-07T16:25:00.002-04:00

My mind has been so consumed lately I have no clarity. I'm not sure what is going on. But I find that I am simply spinning my wheels. I am in a period when I feel like I am seeing through the mundane and frivolous and am focused on God, His nature and how limited we as people are.

I see that all of our bodies are broken and are breaking. I see that we all have chains that bind us and hold us back from truly feeling free and experiencing what this life has to offer. It's those little things someone said to us when we were little that resonate. It's the tone that a positive thing was said but became misconstrued. These barriers keep us from living out loud. Living a genuine life.

Why do we feel the need to keep up pretenses? Follow in cookie cutter decorum? What is holding us back from breaking that mold and radiating the potential that God has for each of us?

The things in my mind that are holding me back are bubbling to the surface and being revealed to me. Each one I recognize and feel really stupid when I see how unfounded or misinterpreted it truly is. If you want to accomplish goals, you can not set yourself up to fail. I am trying to dust off my cobwebs and face that which holds me back.

By holding on to those things which bind you, life is crimped, tunnel visioned. We need to look beyond the skeletons and see that we can "Soar on the wings of Eagles" if we allow God to clean out the cookies in our minds. You know all those things that clog up our minds and slow our functioning.

Oh wouldn't my psych professors be so proud of me as I describe self-actualization!

My cookies? Thinking I can't do something because it's hard. Thinking that it's not worth it. So why try.

There are so many reasons to not try. So many things that can go wrong if we put ourselves out there and try something new. Ohhh we may even be rejected. Here's the deal. If we don't put ourselves out there, we'll never know. If we don't follow the path God has for us we will never be free.

I am not saying that the road is easy. Most often it's not. But I long to break free from my cookies and soar with God. I try, I succeed. I try, I fail. I feel discouraged, I keep pressing on. (OK so "Tubthumping" by Chumbawamba just popped in my head "I get knocked down, but i get up again...." Great now I'm going to sing that for the remainder of the day.)

Water Tables, Slip-N-Slides and Kayacks

2010-06-01T07:49:00.004-04:00

I hate to mention the word......quiet......the bugs are still sleeping. They are in the basement in a double bed. Our A/C broke yesterday so they get a change of pace. You would think they were moving down there for a couple weeks! They got their jammies and their clothes for today and packed them in their play freezer that is now doubling as a dresser. At least their clothes will be cool when they get dressed. It is HOT in this house.

This weekend proved to be a mixed bag for us. We really had some wonderful family time and got a couple things that needed to be done checked off the list.

We explaining Memorial Day to the bigger bugs while Lain was bouncing around nearby. You should have seen their faces to realize that people fight for our freedom (what's freedom Mommy?) and die so we can have it. There was some awe, humility, and sadness mixed in. I can't blame them. I am so very honored to live in a country where some are called to fight for us and lay down their lives for the things we enjoy.

The bugs and I hit the road to go pick up dinner on Sat. night. (We were going to debut the new grill as ours rusted over the winter, but Daddy didn't get it together until after dinner time. You know they tell you one hour assembly and it turns in to 5???) Elaina was telling me that she drew Ava and she is so cute. I told her she was so cute. Then she turned to Alexa and said, " I just wish Ava could come back to us." Alexa chimed in, "I do too." Emmy then said, "I wish she could too." I certainly agreed. It's moments like those that I find touching. Unifying.

We took the Bugs kayaking for the first time this weekend. Now they are hooked. There is something so peaceful about being out on the water and looking around at what God created. There is something very adorable about my little ones in life jackets and wind in their faces.

At home we played with our water table, slip-n-slide knock off for $6.99 (gotta love a sale and a gift card!). We found ant hills, baby bunnies and discovered that the bluebirds have babies in their nest! Our beans, zucchini, cucumbers, peas, lettuce, potatoes, onions, cantaloupe, watermelon are up in the garden. One of our tomato plants has a tiny tomato. (Elaina what color tomatoes do we ONLY pick? "RED!!!!!!!!!!!" ") The bugs smell like sunscreen.

We had a cook out with my parents and brother that ended with a fire pit fire, marshmallows and Grandma's Peach Pie. As we were saying goodbye to everyone, I realized that I was happy. I had a good day, all day. I felt free of the ever-present grief. It was so so nice.

Yesterday we flew the flag, proudly. We picked up the toy room in the basement, at the instruction of my brother in law, I tired to assess the A/C/Furnace. Did laundry, made bracelets and rings and was surly. The bugs and Allan spent most of the day outside. I hid.

We finally got around to taking the crib down, while the bugs were chillin' in the cool basement. Before we brought it down to store, we joined them and told them what we did. Alexa (who was standing on the toy bench in a hat, sunglasses, a dress and a feather boa-she was a rock star of course-was holding court to the more tamely dressed, pretty princesses) stopped and got sad. Emmy stopped and got sad. Then they each said, "Well, I just wish that Ava could still be sleeping in that crib." We snuggled. They decided to help Daddy carry it and put it away. We Benton's are a team.

I found an ugly truth. I am not able to deal with heaps of stress. I retreat or get angry. kids in each other's business + a broken A/C and I am at my limit. I begin to worry about money, scheduling, etc. Then bam! I am so angry about how Ava was treated at the hospital by some of the physicians that it affects my interactions with my children. I am quick to anger and my temper is short. It's like if they tap into what would usually bother me, annoy me, it opens up a big loud voice. I am ashamed and frustrated with it. I don't want to be this way. I hate that I am and that they have a Mommy that is like that.

Last night our Bible story was about Moses loosing his temper and not obeying God. Allan asked the bugs if they ever lost their temper. "No". I said, "Do you know what temper is?" a chorus of, "No!" Daddy explained. Alexa said impishly, "yes". I then told the bugs that I lost my temper and I apologized to them.

It's so hard. You talk in a loud voice to be heard, and it taps into emotion that is just right there. Sometimes I don't even know how right there it is. I ask God to help me. What I need to do is forgive those who harmed my child. It's a tough one.

I just asked Dumbo to let Em, Lex and Lain know the A/C guy is coming in a half an hour so can they get dressed. I was just delivered cake and pizza too. I guess my day is off and running!

and so it goes

2010-05-25T09:41:00.002-04:00

Well, I knew if I wrote about how we were having a good week last week the tide would turn. Alexa was missing her sister like crazy yesterday. One of her school pictures was of Ava in her bed at the hospital. Then she lost her first tooth, so that seemed to break things up for her.

Elaina told me at lunch that she likes Dr. Murphy (her pediatrician), but not the other doctors. The hostival that was Ava's. That's what I'm scared of. She also asked me if Eric was a baby that was ours too. She is really trying to wrap her mind around so many things. The other night she was telling me about how Uncle David talked about Ava and God and Ava was in a box. My brother conducted the graveside service. I am so grateful that we have a little one who is so young but can express herself so very well. What a blessing so that she doesn't have be trapped by her thoughts.

Last night Emmy woke up crying for her sister at 1:30am.

I absolutely hate that these kids have to deal with this. It quite possibly breaks my heart more than the loss of my own children. We just use these moments to ask questions, talk, cry, hug and pray. I don't always know the "right" thing to say, but I try my best.

After Eric died I was in Carter's with my Mom. I was pregnant with my now toothless big bugs. I happened on a Very Hungry Caterpillar outfit (one thing we used to call Eric) and just cried. Put the outfit back and kept on shopping. It was significant in that I realized then that I would go about my day, cry, then go about my day. I think the girls are hitting that stride. It's just that with each developmental leap they have to frame their understanding of their loss. We revisit, reframe and then put on a leotard and twirl.

Whoa!

2010-05-24T09:45:00.003-04:00

We had a really busy week last week. I spent most of it really focusing on my jewelry making and updating my Etsy shop. The catalyst was that I had the honor of making and donating some pieces for an Ebay auction in honor of a 4 year old little girl, Susana, who is fighting a battle with cancer. Her parents are missionaries in Haiti and now back in the states to help their daughter fight fight fight. Their story has touched me. They have a (almost ?) 6 six old daughter as well. I really identify with some of the feelings they are having as they support their sweet child fight the fight of her life. To learn more about this family go to www.howcantheyhear.org . The last update I found myself agreeing wholeheartedly with what Susana's mother was saying.

So I designed a prayer bracelet for her and donated other bracelets as well. If you would like to assist this family, please go to www.ebay.com and search "auctions for susana". There are 174 items up for bid. The auction ends on 5/30/2010. 100% of the profit goes to Susana's medical fund.

By participating, it's a small way I can bless in a way that I have been so abundantly blessed. It is an honor that God is allowing me to think and live this way. On my Esty site (www.etsy.com/shop/4ladybugbracelets) I feature two prayer bracelets, one for Susana, one for Haydon. 50% of the profit from the purchase of either of these bracelets will go to family fund for each child.

Haydon is a 15month old little girl living with Spinal Muscular Atrophy, Type 1 (SMA). It's a fairly common, rare neurological condition where the afflicted patient progressively looses strength and muscle tone. Haydon's family loves, advocates and fights for this beautiful child every day. She is a beautiful and sweet baby girl. (She's tough too). SMA was one of the very first things that the doctors worked Eric up for when he presented at the hospital. This is close to my heart as well. Haydon's story can be found at www.caringbridge.org/visit/haydon/journal .

There are many other things cooking for our family right now. The Joy-Hope Foundation is now Incorporated. Step one- check! Now we are on to the next steps that will enable us to take tax-deductible donations!

Our family was one of the featured families in my Alma mater's (Grove City College) Alumni magazine, The Geedunk.

There are still a couple other things in the hopper, so to speak. So more to come later on those.

As for our family. I am happy to say that this past week the black cloud around the house was a little higher and a little grayer. The emotions of grief were not so intense for all of us. There were breaks in the battering waves. It was really nice. This week Elaina hit a developmental spurt and is thinking and processing what she can understand about Ava and her life and death in a new light. That always leads to tough knock you on your rear questions. I choose to look at that as good.

Right now Emily and Alexa are now focused on "Z" week at pre-school and have mixed emotions as to whether or not they want summer vacation to come. They really love school and don't want to miss their teachers, who have done so much for them this year by supporting, nurturing and loving them. (They taught them lots of stuff too!) Then again there is Kindergarten on the horizon, so of course there is the lure of getting bigger! (We are going to give Homeschooling a whirl next year!!!!!!!!!!!!!!)

Allan and I are desperately trying to squeeze out time together in the small windows we have with each other. We are trying to keep the household going, work, grieve, work at the Foundation, and have some fun as well. Right now it may seem crazy busy, but it feels balanced.

Why? Because I actually spent some time in prayer. You would think that I would be more disciplined about that by now. Ugh.

Elaina is alone and it is quiet. That is my sign that I am done blogging for today.

Family Times

2010-05-15T22:25:00.003-04:00

Driving home from a Birthday Tea party with Elaina I thought,"we should go to the beach and play hooky from church tomorrow." I dismissed the thought as it was getting to be afternoon and it's the bugs' favorite Sunday School teacher month. They hate to miss.

After Lain and I had been home for awhile Allan came up to me and said, "we should just play hooky tomorrow and go to the beach." I told him I thought the same thing. So after a couple phone calls, a gazillion questions, and wild screams of excitement, here we are. Bugs are all tucked in a queen size bed while we relax and listen to the waves crash and the live band express themselves.

I can't tell you how many times we have wanted to make a hasty jaunt and for some reason or another decided that we can't, shouldn't, don't feel like it. Why?

The nice thing is that the girls are really transportable now. Not much gear is required. Not too much schedule adjustment and we are off. It is nice. A perk really. I see other moms with that dazed look that only happens while we are in the thick of it (baby, toddler, young preschooler phase). I realize that I am the mom that is coming out of the thick into the more relaxed (I am using the term loosely here) phase. I do like how much easier it's becoming. I remember that is why we were thinking against another baby. Now it's oxymoronic.

We are enjoying coming out of the "thick" and into the "thin" of parenting. We have a size family that we intended. But there is always that twinge in the back on my mind and in the center of my heart. I should be in the thick of it. I should be more tied down. Then again I don't know if "Should" is the correct word. If I should be that way, I would be that way. That is not what God intended for our family.

Last time we were here I was pregnant with Ava. We talked about all the adjustments we would have to make should we come down to the beach for a week as a family of 6. We are here for a night as a family of 5. Because it was a spontaneous trip I didn't get a chance to think about all the "what if's" and "we don't get to's" that I would have otherwise. That's a good thing. We're here to relax and have fun as a family without the pressure of the memories. They are there and we all feel them. Yet they haven't been a dark cloud on our getaway. I am so grateful that we get to do this in the "thin" and treasure or sweet babies who are not with us at the same time.

Mother's Day

2010-05-10T00:34:00.002-04:00

Today I learned that it is possible to feel special, appreciated, loved and deadened inside simultaneously. It's so weird to love the family you have with you and miss the one that is not.

Whenever I allow myself to think that we have two children, that I carried and we loved, held and cared for in our home, in Heaven I think that my heart stops. I am overwhelmed that we have as many children in Heaven that the average American family has. It's like a whole family. It's too much to handle on a good day, honestly. I usually try to separate them. It's holidays when the death of my kids hits me in the face.

I'm not griping about how blessed we are with our 3 surviving children. Not griping at all. But I'll tell you I'm not warm and fuzzy about Mother's Day either. Actually, I never have had the opportunity to be.

Eric made me a Mommy. My dream came true. On my first Mother's day I had empty arms. Then I had the girls. Then we had Elaina. But each year while I treasured all that we have, knowing all too well how quickly it can be gone, I realize that I don't want to celebrate the day. Oh the girls enthusiasm and love help, but to keep up the facade all day is just hard.

This year I am just numb. Honestly I appreciate all the love and support I have gotten and do get. To go to church for two services and then to work for 8 hrs is a long time to keep it together. I have to say though as much as I am loved and supported I would rather just have my kids. It's that simple.

I get angry that a simple man inspired day just intensifies the grief that I feel as I walk my walk. A day that is meant to show love and respect is always tainted. It's true that I am not the first and hardly the last who struggles with this day in the face of grief.

I just wish that it didn't have to be this way. But the apple was eaten. Christ was born. Christ died for us. Christ rose from the grave. This is why I can make it through a day like today.
This is why I can experience joy juxtaposed with sorrow and find hope through my despair. This is why I can love my kids like crazy and cherish their specially selected gifts. This is why I can freely grieve for my sweet baby boy and baby girl who I long to hold.

A Gift

2010-05-09T00:22:00.003-04:00

On the way to our niece's birthday party today we talked about how Ava went to the hospital on The bigger bugs' birthday (say that 10 times fast). They were expressing how they were sad that she got "sick" on that day. They asked my why she was crying and they were thinking that it was because she didn't want to leave them.

I confided that I have been upset about Ava going to the hospital on their birthday as well. They each confided that they are sad and upset about it too.

I told the bugs that Ava was probably crying because she couldn't breath well and that she was uncomfortable and needed help. Then I realized that I began to notice that she was having intermittent issues since the Thursday prior to her admission. She has a doctor appointment on Thurs, and was said to be fine. I went back to work Fri, Sat and Sun. her breathing was eating at me and I was hoping that she would make it through the weekend. I have been beating myself up that I didn't get her help sooner. Knowing that the only thing that I would have done was bought a few more days away from home.

It dawned on me. Ava was fighting her way thorough and I thing she was trying to stay with us the best she could. She was home on the bugs birthday. They got to hold her, kiss her and love her in their arms. If she went to the hospital anytime sooner, they wouldn't have been able to even see her. There were no visitors under the age of 16 at the time due to the H1N1 Virus. I told the girls that Ava tried to stay with us as long as she could. Her little body needed help but she fought long enough that they could be together on their birthday.

As I write this I realize that since I've been focused on the negative of that day I missed the fact that Emily and Alexa and Elaina got to each hold their sister for the last time, on Emily and Alexa's Birthday. The pictures we have are solum. The bugs knew that this was big. But the gift that they were given was priceless. What a present.

Elaina's Bedtime Conversation

2010-05-04T20:18:00.002-04:00

For four and a half months now Elaina has been asking me "Mommy why Ava in Heaven?"
For four and a half months her answers to the question generally stay the same.
For four and a half months I watch my little buggie boo process death.

It's a tall order for someone who was 2 1/2 when her sister died.

For awhile there Elaina would tell me that she was a baby and then she died and then she came back and was big. (Not Oh-Fish-ally Big, I'm convinced that she will be 4 before that happens) just regular B-I-G.

Tonight Elaina asked me, "Mommy, why is Ava in Heaven?" (Even the question phrasing is maturing).

Following in my role, "Elaina, why is Ava in Heaven?"

"Mommy, she was sick. ummm what's next? Oh she went to the hospital and then she died."

"Elaina, does everybody who goes to the hospital die?"

"No."

"Right the hospital can help people get better too."

"Mommy, a lot of babies. No Some. No. Mommy, there are lots of babies that don't die. But Ava did. Can you get me a lot of books?"

"Mommy! That's not a lot of books!!!!!!!!"

"Mommy,When I feel my poopoos and peepees coming out I will runtothepotty."

"I LOVE YOU I LOVE YOU I LOVE YOU!"

Just like that within the parameters of routine our three year old builds on her understanding and takes another step.

I love to watch her organize her thoughts. I hate the topic.

It's not always about Ava

2010-05-04T10:33:00.003-04:00

It seems these days that once a week something breaks and we need to get it fixed or get a new one. There's lots of work that this house needs to have done on it some of it is necessary due to the age of the house, others it's necessary due to the poor work done by the builder. Regardless, the work needs to be done and that costs money.

I am grateful that we have been able to take care of all that is going on. Now we are encountering complications. The front door we ordered is too big for the frame, so of course, the only one they can find is twice the price. So we remeasure, and make decisions. The air conditioner is not working. All basic maintenance that we can do has been done. They guy comes out tomorrow.

Now we have a window with condensation in the middle of the panes. We thought there was an ant infestation, that seems to be resolving. The car didn't pass inspection. All basic maintenance. Some more costly than others. Our roof needs attention as well.

Allan is working mandatory 10 hr OT weekly. I miss him. Elaina is constipated and it's because she is strong willed and she is controlling it. She doesn't want to go.

All of these events are in control (well I wish Elaina didn't have so much control over one of the events). They are going to be taken care of. But I find that I am down. All of a sudden I am not OK. I was handling it. Now I'm done.

It's silly, I don't want to go backwards I want the door fixed. I want to know how much the car and the A/C will cost to fix. The door has been bugging us for a couple of years now. I just want it to lock and unlock without fanfare. I would like to have the new storm door up so that we don't have to watch our feet for the handle that falls off when we use it.

I worry about Elaina not going. I NEED her to just be OK. I know that this her freaky psychological control issues, but sometimes I get irrational and think that there is a lurking mitochondrial disease that will take her from me. I remember feeling this way when Emmy and Lexa were babies. Just *poof* and they would be gone.

I thought I was alone. I cried. The big bugs flew in and saw me. They asked me if I was sad about Ava. Oh look at that suddenly it was all about loosing her. They gave me Teddy to hold, Emmy played me a song on Daddy's broken Ukulele. Alexa suggested that I pray and she prayed with me. Then Alexa drew me a picture of Ava at the hospital, Emmy got me some photos and made a book about Ava.

Then I cried because my bugs are just so awesome and wonderful.

What it boils down to is that I don't feel safe and secure. I feel like we very easily can have the rug ripped out from under us before we know it and we will be aimlessly rolling in the abyss, again. Safety and security are emotions that are underrated. We need to feel both in order to thrive. Otherwise we waste our energy searching for ways to attain them, usually by looking down a rabbit hole of things, spirituality and what feels good in the moment.

Today I struggle with feeling secure in my environment. Finding safety in things that work and having a nest egg. I need to remember that my only security and safety is wrapped in the Arms of Jesus, the rest is temporary stuff. Resting in those things will lead to temporary feelings of safety and security.

Talking

2010-04-30T07:44:00.003-04:00

Yesterday I had two big conversations with two special bugs. It amazes me how God can allow each of us to help the other when the moment is just right. If we all were having a hard time I think that we would all be flopping and floundering all over the place.

We had an innocuous day yesterday. Play in the morning, play at a friends house, dinner and more playing. Daddy didn't get home until almost bath time so there was excitement when he graced the threshold as I was frantically whipping up a batch of cookies for snack at the girls' school. (I decided forget about the healthy. I wanted to make cookies with the bugs).

At one point Emily got really pensive. While the other two bugs were flitting about outside in a pile of mulch, we stole some time together. I was pretty happy that this lady bug is afraid of "buzzy bees" (you know the big fat ones that don't sting) in that moment. We talked about all her thoughts and pictures in her mind about Ava. I found out that she is bothered by the memory of the first time she visited her in the hospital. She didn't look like her baby sister anymore. i was so incredibly grateful that that was also the day that Ava opened her eyes six times; right after each of her sisters kissed her twice. (Little stinker didn't really care that Allan and I kissed her! ) :-). The memory is tough but there is good in it. Emmy smiled remembering how much her baby loved her.

Quickly our conversation turned to a little girl, Susana, that we have been praying for. She is the three year old daughter of a mutual friend who was recently diagnosed with cancer. The girls became aware of her when they saw me making prayer bracelets for her that I sent the family and hope to sell for a fund raiser for that family. Her Mommy and Daddy are missionaries in Haiti. She has a five year old sister that the bugs identify with.

Ever since they heard that Susana's Mommy and Daddy work with orphans and then learned what that means Emmy and Lexa have been trying to figure out ways to help the parentless children in Haiti have food, toys and love. Part of this is their big huge compassionate hearts. But another is that the really now know first hand what it is like to be supported by others. They know what Gods Love feels like when those around you hold you up that they want to reciprocate. This is one of the many surprise blessings that we have received because of Ava and the work that God did through her.

So while these conversations are tough, look what we can learn.

Last night Elaina asked me her usual question: "Mommy, why Ava's in Heaven?" I haven't tucked her in for awhile, so I haven't heard it.

"Why is Ava in Heaven Elaina?"

"She was sick....and um I forgot the rest...Oh! All her things we broken, she went to the hospital and then she died."

All the "things" that were broken were her mitochondria. A word that my three year old couldn't remember and wish that she never had to try.

Keep on Keeping On

2010-04-29T09:44:00.004-04:00

I haven't written for awhile, mostly because my mind has been so cluttered and I've been trying to sort it all out. I am still sorting but things are becoming clearer one by one. It's tough work to go through this grieving process while you are trying to keep every other facet of life together too.

I'm really not complaining about that. It's just a fact and it is what it is.

We've been busy getting our vegetable garden ready, planting raspberries, grass and getting ready to put in strawberries. The bugs are all about art right now and making books and coloring are on the top of the "to do" list.

Allan is now working mandatory overtime- 10 hours a week which is putting a crimp on our time together and our energy level. It's another hurdle that we have to climb in our already full life. I'm back on-call now as well. So it seems that all components are getting back into place.

One day at a time sometimes means one hour at a time.

Day to Day

2010-04-22T08:49:00.003-04:00

We are chugging along in our neck of the woods. Days are filled with birthday parties, playing, bike riding, garden planting, laundry, cooking, coloring, and work.

Some days some of us feel just fine. Some days it's a struggle to do those things, but we muddle through.

Yesterday I was feeling just fine, most of the day. I got to work and out of nowhere, I felt enormously sad. Seriously, I usually know my triggers. This one I have yet to identify. I know that this goes right along with grief, but I don't have to like it. I was speaking with a coworker and I told her that sometimes there are "stealth triggers". It just sneaks up on you and you don't know why or how.

I'm finding that the best way for me to handle the grief waves is to stay up after everybody in the house is asleep and take time to deal with it. It doesn't do too well for my sleep schedule, especially now that I am back on call at night, but I can't sit on this. Otherwise I will become a ticking time bomb. I don't like that at all.

I am beginning to notice how much the bugs have grown up lately. Right under my preoccupied nose. They do so much more around the house. They each have really big thoughts and they adore each other. I love that.

What comes with really big thoughts are really big questions. Really big cat fights and really big feelings of being wronged. This keeps me on my toes. Some days I'm equipped to deal with it other days not so much. Isn't that true for any Mom really?

One big change around here is that Elaina has decided that she misses out when she naps, so she would prefer to "rest" (in the loosest possible term the definition allows) with the big bugs. The rule is that if you fight, scream or clearly need a nap you must be in your own room. Mommy tells you when rest time is over. You cannot come down until the toys are put away.

Elaina takes offense to all these rules. She doesn't know where the toys go, she doesn't know how to put them away, she's tired. She's all done "sleeping". After a knock down drag out with Alexa on Sunday that culminated in Alexa yelling, "Lain I will SHOW you what bin to put the toys in!" and Elaina screaming over her, " NO YOU WON'T BECAUSE I'M GOING TO BE DOWNSTAIRS WITH MOMMY AND DADDY!", I decided to be proactive.

Tuesday's rest time arrives, i give the speech, the run down of expectations. Little Miss pipes up and tells me, "OK Mommy I won't tell sisters that I don't know how to put the toys away." AHHHH she is always so very many steps ahead of us!

I don't know how today will play out, but I just continually ask God for His grace and for wisdom so I can press on.

Faces

2010-04-15T22:35:00.002-04:00

So Emily was having a hard time off and on today that culminated in on. She just broke down while making a book. This is not like her, really. She bottles it all up until her defenses are down and then look out.

I looked at her little face all twisted and incredibly sad at dinner. I felt sucker punched. I realized that I haven't seen that look since Disney. Prior to Disney that was the face I the majority of the day. Every day for a month, I saw my grief stricken babies and I don't think I realized how sad they looked for being caught up in my own grief. To see that face tonight was more heartbreaking. I don't want to go back to nearly 4 months ago. I want to move forward and get away from that intense full on pain.

Only God and time will do that. I just can't feel like back peddling. As much as I hate to see that grief on the face of my sweet bug, I know they hate to see it on Mommy and Daddy as well.

As much as that was and is hard to see, manage and deal with. I find that I am grateful for the fact that while it pops out, we are not in it constantly. I can see that we have made progress. So that is good.

What I also realized is how important the mission of the Joy-Hope Foundation is. Those long faces were chipped and cracked into smiles and twinkling eyes in Disney. Our family could be free to be where we were and have fun. To be distracted and to step out of ourselves.

After Eric died a generous family greatly helped us to go away. We went to St Maarten. When we came home as I would feel so incredibly sad I could picture pristine sand and blue green water. It just helped to see the beauty in the world. To be out in it. To be anonymous. It was refreshing.

I am grateful that two times now we were able to bookmark the grief and have something fabulous to think about.

Big Steps

2010-04-13T12:34:00.003-04:00

Today is the day we take our first official step in getting the Eric and Ava Benton Joy-Hope Foundation up and running. It's an exciting step. We are on the precipice of something wonderful. While I am wondering how all this will really be possible, I can't wait to get out there and help other families.

It's funny, I don't have many expectations about this meeting, I'm not sure if it's a "here's a boat load of money let's get our paperwork done" or a "these are the things we want to do" type meeting. I do know it's the first step and getting it off the ground.

Getting the foundation off the ground will lead to a 5K and planning a fund raiser concert event. I don't know the details, I know our vision. I also know that for the better part of a year now I haven't known the details and it all seems to work better that way. God is doing this. I'm just following.

While I wish there weren't any families that would need to go on vacation after the death of their child, I can't wait to make that a possibility for those people. I can't wait to bring awareness to a disease that is so misunderstood, especially in the medical field. I hope to band together with others who are affected and see where that goes.

What's really cool is that the bugs really want to do this as well. They have a very really idea of be supported from the community and they can't wait to dive in and return the favor. I had no idea that that would occur, what a cool and surprise blessing!

Wooden Nickels

2010-04-10T00:41:00.003-04:00

Tapped into a new and surprising emotion tonight at work. It was spurred on by having to work with a Resident who did not do very well by Ava.

Of course I knew I could wind up dealing with her at some point as she is a Resident through my hospital.

Out of the blue I got the call. She gave me the run down, I don't think she knew it was me.

I schlepped down to the ED to meet with the family. There she was. I stood right next to her and she didn't even acknowledge me.

I met with the family and did what I do best.

On my long walk back to the office (the hospital I work in is B-I-G) my mind twisted and turned. I kept trying to come up with the perfect phrase that would sum up all of our past interactions so it would be ready for the next time.

I thankfully was able to talk to my brother, a habitual night owl. I realized that I am just so flat out angry about some flagrant stupidity and lack of care that the feeling is hollow and hurt.

My Mom usually says that she is so angry that she could spit wooden nickels. I always thought that that was a dumb phrase, but I have to admit that I thought it so many times while we were at the Hospital. For some reason it really works for me. Right now I wonder if I could breathe fire.

She's been at my hospital for 2 years. Tonight I work with her. God needed me to see her. I get that. Now I just don't know what to do with it. How can you tell someone who doesn't care, "How dare you"? I would love to put three people in a room and explain to them what they have done and how inappropriate is was and continues to be. But it would do no good. The reality is that that is why I am so marred. I am appalled that the human condition is one that can be so conceited that one can't hear or listen to what is wrong. There is no responsibility taken and now we get to wonder what could have happened. While they practice medicine unscathed.

There needs to be some intentional change that comes from our experiences. It will have to be small as the change that is required is systemic and institutionally biased. One step at a time. Maybe one physician can learn how to practice with humility and a listening ear.

I can take great comfort in the fact that I am not responsible for their actions and their interactions in this world. I know that Jesus would forgive them, and I know that I must. I know that I will have to pray hard about that and pray for them too. It will be long and slow, but I know it will happen. I can't let the anger eat me alive. What does that serve? It will be a hard road I know that too. Forgiveness is necessary, but not so easy.

Realistically, what I am referring to is for the saftey of other patients as well, not just me blowing off steam because I got hit between the eyes tonight.

I do sincerely hope that the Joy-Hope Foundation will one day have enough behind it so that we can adequately advocate for other children with no voice. I write this sentiment from a sincere heart, not out of anger.

Working through

2010-04-09T10:45:00.003-04:00

We have a way of living around here that is slowly settling into normal. I am beginning to learn of when to anticipate the emotional hiccups. Yet I am figuring out the pattern in the middle of it not before it. Of course by the time I wise up enough to be prepared, things will change. The bugs always surprise me with how grown up their feelings are. How deep their pain is.

I am finding myself frustrated with my grey cloud. I remember when Ava was with us that I couldn't bear the thought of feeling like this again. Yet here I am, functioning. Sometimes better then others, but trying to put one foot in front of the other nonetheless. It's a testimony of God's faithfulness and that He's got our backs.

This morning I was in Elaina's room changing her pull-up- yup you heard me Miss Stubborn Potty Trainer is on hold. We tried to reverse psychology her. As Allan said she reversed reversed us and is always one step ahead. She's half trained, but we told her that we are done since she is too little and clearly not ready for underpants.

OK, I digress, as per usual. I was changing the little bug. I realized that I have these little thoughts that creep in and pop out of my mind. The bugs are doing ok in the moment and I am too, but then a little twinge pops into my brain. I am happy about how well Elaina can dress herself and how we can more easily get up and go. Then bam, I think about how complicated my like should be and how I wish I were tethered to a nap schedule.

We are getting family pictures taken next week. We tried to schedule it when Ava was with us. When we got it scheduled in the fall, I had a pit of my stomach feeling that we wouldn't be able to get them done. Ava was hospitalized 2 days before we were going to have the photo shoot.

Since Eric died I have never been a big fan of a family picture or a group shot. It's never complete and while I can appreciate what I see, I can't help but notice the emptiness. My family is never going to be whole on this earth.

Yet we need a picture. We are who we are and we need to celebrate our family. So I took the plunge. We were chatting about it and Emily said, "Mommy, but Ava was supposed to be in the picture." Great. I never seem to think about how they are going to see the hole now too.

At the same time, we all go about our business (whether it's in a Pull-up or not I suppose). We play, clean, cook, bake, make books, read books, laugh and have fun. I breath a sigh of relief, we can be normal too. Then someone gets upset and cries for Ava. Elaina insists that Ava can and will come back. ( I think learning about the Resurrection of Christ threw her off) . Alexa plays Mommy to her children who are sick and have to go to the Hospital. It's part of the day and our play. Sometimes I let it roll off and sometimes it just makes me sad. Sometimes it makes me angry. They are working it out in the way they know how and I am grateful that they have an avenue for that. The bottom line is it is what it is. Press on we shall.

I really long for a time when I can post that I feel unabashed Joy on Facebook. I feel joy but it's dampened. When I laugh it feels great, and it is such a surprise. Then I'm reminded how I don't do that near enough. To relearn how to live, you have to go through the motions and eventually it all will synchronize. I just wish I could skip to the happy. Of course then you skip all the other lessons tucked within and you miss out on how God holds you together.

Incredulous

2010-04-04T20:10:00.002-04:00

Six years ago I was making Easter candy in the kitchen humming and singing. I was content and happy. Eric had only been gone for nearly 4 months and I just had my second miscarriage. But there I was in our town house, content in God and our lives.

Six years ago I sat at my in laws table, fairly certain that I had a big secret, trying not to get my hopes up. I wasn't scared. I was full of hope and anticipation. That year I got a flower for Easter. Part of it's name was "Emily". I told Allan on the way home that if in fact I was pregnant and it was a girl, that I thought it was neat that the flower name was a girl name. (He looked at me like ok, but I'm not getting any hopes up).

I waited a week to take the test. Eight weeks later, we found out that there were two. Seven weeks after that we found out that there were two girls, and they would probably look a lot alike.

I was at peace and I KNEW that they were OK. Of course I had my moments, but the over riding feeling was hope, anticipation and excitement. My dreams were to finally come true. I felt so loved and blessed by God.

This Easter I sat at my in-laws table in the same place. I got flowers. I have no big secret. I was hit by a ton of bricks in realizing that I have to miss 2 babies now and my seemingly full table is glaringly empty. For the first time I was faced with the daunting task of missing Ava and Eric at the same time. I've been separating it. Dealing with the loss of both them is daunting and not pretty.

In Ecclesiastes there is a lot of talk about everything being meaningless under the sun. How we work and toil during our days under the sun and when we die we die. There is nothing else and it's meaningless. The there is talk about how we can honor God when things are great and we are enjoying His creation. So why would we not respect and honor Him when things aren't going our way. The writer talks about how we all are going to die. All we do is meaningless.

I really should be mad that God took two of my children from me at 4 months old. I should feel that our lives are meaningless. I should wonder how God could do this to me, my husband and my sweet bugs. Don't get me wrong I am and can be angry. I am angry that I have this path to walk. I am angry that our daughters feel this intense pain and loss at such a young age. I am so sad that I couldn't buy yellow Easter grass this year and put it in another basket. ( Each kid gets her favorite color grass in her basket. Emmy-pink, Alexa-green, Elaina- purple and the bugs decided that Ava's favorite color would be yellow since no one picked it yet.)

My days under the sun are numbered, my toil may go unnoticed, but it is not meaningless. These passages in the Bible were written before Christ. I can see in that book the loyalty to God but an emptiness in living. There was no Jesus.

Here's the thing, what happened in our family really really sucks. It hurts, stings and burns. God could have stopped it all, He could have changed the outcome. He was and is totally capable of doing so. But for some reason He needed Eric and Ava here for a brief period of time for whatever purpose He has for them, their lives and our little family. And I am forced to wonder where I get the audacity to think that He should have spared my children, living and dead, and Allan and myself from our pain.

See, God sacrificed his own SON. He allowed Jesus to be murdered and watched Him suffer. Why? Because it was to fulfill His Divine plan. It was so that we could live our days under the sun and have them not be meaningless.

So this Easter, I don't have the hope of new life growing inside me. I don't have my precious Eric and Ava. But I do have hope and joy in our future due to the promise of the cross.

Tulips

2010-03-29T22:39:00.002-04:00

Where did the week go? I can honestly tell you I know I was busy and we had lots going on, but I couldn't tell you what it was.

That is where I find myself these days. I have no concept of time. I am now starting to be able to look ahead further than lunch. Waking up from the shock of grief is like watching the tulips rise from their winter slumber. They fight and push through the soil and there is a tiny green leaf. The rains come, the leaf grows bigger, and more make their debut. The weather warms, the leaves continue on their mission. Suddenly the leaves are fully out and are a deep green. Tucked way down in the center is a bud beginning to unfurl.

I know that one day I will look at the flower bed and there they will be in all their beauty. Tulips basking in the sun and adding beauty to an otherwise bland landscape.

I know that I am not close to blooming, but my leaves are definitely beginning to grow and thrive. This is the first time in awhile that I have felt not all consumed. I seem to have more energy right now to get things done and get back to the business of living.

I find myself looking forward to the Spring and Summer traditions the Bugs and I have. But it's not without the now familiar and poignant twinge I carry with me. This year we can accomplish our traditions in a far less complicated fashion. While I am happy to enjoy how much easier the bugs are becoming, I feel sad that I get to do that.

I'm pushing stretching and reaching to bask in that sun, getting through the rocky soil is the darkest and exhausting part. I can be renewed when I grow weary. I simply ask God to help me.

I am so grateful that He is giving our family the gift of enjoying what we have and each other. I couldn't bear this walk if that were wiped away.

I know that now we are on an upswing and around the corner will be a downward trend. But the slope is positive and progressing. So I've learned to take it as it comes and know, like a stage of a child's life it's not forever. Although it does seem that it is. Especially since last week feels like last year. December 18th seems like an eternity ago, yet paradoxically rolled together with crisp emotion.

On the way home from school the other day Emily said that she wished that she could invite Ava to her Birthday party (apparently the precursor is that she and Alexa are getting tired of being five). Elaina chimes in saying, "Well, maybe we could get she back." Alexa told Elaina , "No Lain we can never get her back."

Laina felt embarrassed and tried to pass it off as a joke. The big bugs tried to squash the little bug. I then said that it's OK for Lain to say that she wants to get Ava back. We all do wish that could be true. Then the light turned and we were talking about what we would have for lunch.

It's not enough to crush the progress, but it may slow things down in the moment. However we are all learning to have the moment and move through it, not to let it trip us up for the whole day. These flowers are fertilized with lots of water, prayer are grace. Once day we will bloom fully in the sun and radiate how God intends for us to. Our petals will have a blemish, but I won't try it mask it or wipe it away, I think it's a part of our charm.

Tax Time

2010-03-21T15:47:00.004-04:00

This week I tackled the taxes. I finally stopped thinking of all the other things I could do instead and went for it. After a day of neglecting the children and wondering what I needed to click to make our liability in PA go away I wrangled them, clicked print and was victorious.

This year I realized that I can deduct medical expenses. I found myself wading through a quagmire of paperwork and receipts, wracking my brain to see which of our contributions are pre-taxable and on the phone every 10 minutes or so with my Dad for moral support. (For those of you who know me, numbers ain't my bag but they are for Mr. Spreadsheet.)

As I flipped and scrolled through our documentation checking, calculating and double checking I found my emotions change as the dates on the EOB progressed. Suddenly I was not recording information, I was reliving every step of the way. Each appointment that Ava had. Each ray of hope. Each depth of despair.

I realized that that little girl was not here very long. In the hospital and in our home it felt so much longer. On paper, just like that, it was over and she was gone. I realized that she came out fighting with all she had and never gave up. I realized that I am grateful for my tubal so that I will never have to watch another one of my children live in that way. I realized that I would trade with my kids in a heartbeat so that they would not have to endure that harshness in life.

Then I realized the impact she had on so many and on our little family. It wasn't long we got to have that sweet baby girl, but it was big.

The other thing I noticed was how God provided for our family through that time and now. In the midst of my tornado when all we could do was focus on Ava and hang on by a thread, all of our needs, tenfold, were cared for, fulfilled and multiplied. I have no idea where or how half of what came came. But there it was, not a moment too soon. Not a moment too late. You see, God's timing is just plain perfect.

For the first half of the year our girls were more healthy than usual. This preserved some of our funds for the medical expenses to come. God took care of EVERY DETAIL. I never would have had the honor to see it laid in front of me if I skipped that section on my tax return.

I am so amazed by this, I don't even have the words to accurately describe it. In the service we went to today that pastor mentioned that we need to worship God even if the timing of it doesn't make sense. That is so true, we need to take "time out" to worship even if your sauce will burn on the bottom of the pan. We also need to live on faith, knowing that He will provide, even when the timing and the how's don't make sense. There is something freeing to not be tied to those chains of comfort and security.

Dave Ramsey says, "You have to live like no one else to LIVE like no one else." He is talking about financial freedom and wealth. I can also apply it to living on faith and trust that the Lord will and does provide. If we obey what He calls us to, He will make the rest work out. There is such a freedom in that. Sometime we don't want to obey the "rules" God has for us. We don't want to be "tethered" and accountable. But it's the opposite. By following Him we are "living like no one else to LIVE like no one else". There is freedom and peace in that.

Amazing. I was just doing some taxes. I get to learn all of this AND file an amended return for 2008 (I skipped the medical deduction then and realized I could have taken it). I can tell you that I also learned that Quicken is the way to go for 2010's medical expenses.

Oh-Fishally

2010-03-15T16:42:00.003-04:00

It has been a little busy around our house this last week. Our littlest bug turned 3 on Saturday. I can not believe where the time went. I found myself looking at her and wondering why she is so big. Then my eyes gaze over at the matching bugs and I am stunned once again. They are changing and growing up before my eyes. Allan tried to shrink Elaina, it didn't work.

Lately for the Potty Training adventures we've let Lain navigate the course. Mostly because I don't have the energy to put into the effort. The secondary reason is because we are so busy flitting from here to there this last week that we needed to not be trapped in the house.

Most of the time she tries to tell me that she is big. Elaina truly believed that when she turned three, she would be big. So when she tells me that she is big. I nicely inform her that she is not. She does not enjoy this (or anjoy it as Emmy spelled it by sounding it out this weekend) at all.

On the way to church yesterday she was happily chatting about being three, having a party "to celebrate me" and being big. "Mommy, I'm big. Right Mommy? I'm big."

"No you're not."

"MOMMY. I'm big! Yes I am. Look at me, I'm Long."

"No you're not." "Where do you put your peepees and poopoos?"

"I DON'T KNOW."

"Mommy, I'm big."

"You're getting there, but you are not officially big until you put ALL your peepees and poopoos in the potty, not your pull-up."

"Mommy, I'm oh-fishally big."

"Nope."

Did I mention that our Sunday Morning trek is a half an hour?

Guess who kept her pull-up dry through Sunday school and Family Fusion and the journey home? Guess who ran to the potty when she got home? "I'm big".

Oh there was a celebration, but there is no official biggness until....well, you know the drill.

Today, little Lain-Lain decided to use the potty of her own volition. She would tell me that she had to go and put what she said she had to do in the potty. (Imagine my excitement.)

After the second round, "Mommy, am I oh-fishally big, NOW?"

I told her that if she uses the potty all the time today and tomorrow, then on Wednesday she will be officially big and we will go buy a baby doll.

I don't want to spoil it, but she's doing great. Allan and I are just excited by the prospect that we may have found the hook.

Boo but Yeah

2010-03-10T11:02:00.003-05:00

I am frustrated. I so much want to "get back to normal" and I so much know I am far away from it. While I should be joyful in all I've been able to accomplish, I find myself annoyed that the laundry piles up higher than Mt Vesuvius and there is no creativity for dinner. It's a layer of grief that I did not experience after Eric died. Yesterday I found myself drowning in a sea of grown up laundry crying tears of frustration that I "can't get to it". Is it that I can't or just that I don't?

Emmy and I had a big talk the other day. She is frustrated that her sisters are so sad and that our house doesn't feel "normal". I told her that I am frustrated about that too. We both decided to agree that it's annoying. Necessary. None the less, annoying.

This weekend we were blessed by visits from my second cousin on my Dad's side and by a long-lost friend from my Junior High/High School days. I love how God took an ordinary weekend of toy sorting and cleaning and turned it into something extraordinary.

Elaina is potty training on her terms and I don't have the oomph to fight her on it. So I'm not. I don't know or care if that is the so called "right" way to do it. It's how we are doing it. I know that she is fully capable of using the potty and controlling in her output. She just does it when she wants to. Today her motivation was a potty treat, Super Why and a taste of my coffee. (I figured she would hate it since it's cream, no sugar. Nope. Guess who loves it and wants her own cup??)

As much as I know that this is all "normal" I just want "me" back. We find Joy and Hope, but right now we are mingling it with the sorrow and despair. Boo to that. Boo the fact that 2 of my babies had to die.

On the flip side: Yeah to my sweet family that is still here with us. Yeah to our little ladybugs who are growing up so fast (Emmy and Lexa each have a loose tooth and it's the same one!) Yeah to all the little things that God does for us each day. And Yeah for the chance for knowing those two babies that had to die. His love is never failing, that is why I can write this, even if I am sad and annoyed by our circumstances.

Practice makes Perfect

2010-03-04T20:51:00.002-05:00

It seems that Elaina is fully capable of using the potty, to get what she wants. "Hey Lain," I say, "How 'bout you sit on the potty and then you can color your Pirate."

"Mommy, Mommy, M-O-M-M-Y!" (I'm looking at her the whole time, mostly because I think it's funny that toddlers don't understand that when someone looks at you and raises eyebrows it's an acknowledgement.)

"Yes Lain?"

"Howbout I go sit on the potty and then I can color my pirate. Howbout that?"

"OK! Go do it!"

"Mommy, I get off now?"

"Did you put your peepees in?"

"Mommmmeeeee, I was just doing it so I can color my pirate."
-----------------------------------------------------------
"Lain, remember, you have a Pull Up on. You are little and you have to ride in the cart."

"Do they have a potty here?"

Tomorrow is another day of potty fun, I suspect.

On a more serious side, tonight's family devotional was about talking to your friends about Jesus. The lead in question was "what do you talk to your friends about?" Emily giggled in her sweet Emmy way and said "Stuff". (REALLY??? I thought you were 5 not 16!!!!)

"What kind of stuff?"

"I don't know. I talk to my sister all the time."

Pan over to Alexa. She looks vacant yet a little prepared...hmmmm.....

Emmy finally whispers that Alexa asks her all the time why Ava is in Heaven. Em says she doesn't answer because she doesn't know. We "reviewed" all visited topics: Ava was sick, her body didn't work, God made her, God loves her, she didn't have enough mitochondria....Then I realized Alexa wants to know WHY. Why did it happen to Ava. Why did this happen to Alexa.

I told her that Mommy and Daddy don't understand that Why either. We just have to trust in God's Plan. As I write this I realize we will need to talk about it more.

Off Alexa and Elaina flitted to brush teeth. Emily curled up in my lap. I asked her if she was afraid to talk about Ava. She indicated yes. I asked her if it hurt. She said yes. I told her that no matter how much it hurts or is sad she can talk to us about her. That she can't keep it in or it will be so much harder later.

She then asked me if she could talk about it even in the night? I she absolutely. "But I don't want to wake up my sister." She then told me that sometimes she wakes up thinking about Ava. I asked her what she thinks about and her reply: "The night Ava died."

Finally she told me she thinks about us coming home and telling her. My heart broke. My poor little girl is waking up remembering and picturing horrible things. This is a marker she will always remember. It might be hazy as she gets older, but it's going to be there. She wanted to know why we told her that Ava died. She wishes that we didn't. She's not angry, she just wanted to know why we did.

I told her that we couldn't let her think that her sister was alive in the hospital when she was really dead. I told her that sometimes it's better to know the hard stuff than to pretend. I told her that it would be a lie if we didn't tell her and that we don't lie to them.

I also told her that no matter what time, if she needs to talk to Mommy or Daddy she can. That we are always here to help her sort it out.

I am so thankful that God has given us children who really think things through and although it's harder for some than others, they will tell us what those thoughts are. It's tough questions and thoughts. Especially now we seem to be moving into the abstract.

Sometimes I approach my parenting in a "laying the foundation" sort of way. If we establish this now then they know they can approach us when the rubber meets the road. I just didn't realize that at 5,5 and nearly 3 the rubber is meeting the road and boy does it stink.

Photos

2010-03-03T06:54:00.002-05:00

If you were to look up the word "procrastinate" in the dictionary you would see a picture of my brother. However, for the secondary definition you would find my photo. So in Amy style I was looking for a CD of pictures of Eric last night as someone needed them by today at the latest.

As I stacked and stretched over boxes still packed from things "before Amy" used to do, I found myself diving into boxes of neatly organized and labeled photos. (This must have been "before Amy" as well). The unsuspecting me unearthed photos of those I've loved and have died. A long string of people: Eric Hearn, for whom our son was named, Laura Sitkberg who hasn't even been gone a week, Frances McMillan-my grandmother, Rex McMillan-my grandfather who was celebrating 2 years in Heaven yesterday, Elizabeth Crossan-a sweet young friend, and of course Eric and Ava. I also had the distinct honor of locating their death certificates and having to paw through the memory box.

I never found the CD. I did get smacked in the face with grief.

Right there since my freshman year of college was a string of people who have gone before me. There are a few more in the list, but I did not come across any photos last night. All of these people have been influential in my life, teaching me about life, death and God. As I wake this morning (at 4:30 and the 5:00 thanks to the sleepless bugs last night) I realize that they all left an indelible print on my soul. Each of them called to an earthly purpose- completed the journey. Three in the so called natural order of things, 4 way too soon by our standards.

Here's the thing. Last night was tough. I felt such a hollow pain. Every page of my life is imprinted with love and loss. Most I could rationalize, but I found myself wondering why did I have to have children at all as they come with such a high cost. One you never realize until they are no longer available for you to hold, smell, hear.

On the flip side, what is life here worth if you don't have relationships that are at a high cost? Really all that means is that you unabashedly love without worrying about the level of grief you feel when that person is gone. It will happen whether you go first or are here one left to sort out the emotion. It will happen.

This morning I look back on how I felt last night, my grief was hollow, but not dark. There are certainly times when it is. It's not fun and not remotely pretty and it's necessary. That wasn't last night. The color was white. It was fresh, like Spring. All these wonderful people whose pictures I saw last night are in Heaven, reveling together in the presence of God. I am amazed at how each one has life eternal. In the moment I felt deep pain of all that I, personally, have lost. This morning, of course I'm sad, but as I remember these people and the others who have gone before me, I have hope and a heart of gratefulness.

God orchestrated my life in such a way that I would have the privilege of knowing, learning from and loving these people. Through them I was taught more about God. More about Faith. More about Wisdom. More about Love. So I can learn to fully love and express myself to those to whom I am inextricably intertwined. To those who God has entrusted to me and those whom I walk through this life with. These are the people I can love and live with at the risk of a high cost, once they are gone. But why would I hide? Because the pain is too great when they die? If I did that how would my life be full?

The Saga Continues

2010-03-02T09:47:00.005-05:00

Sooo, we were doing pretty well there for a bit and now littlest bug doesn't feel like Potty Training anymore. Here's the kicker. She's trained. She knows when to hold 'em and she knows when to fold 'em. She can control everything until she feels like getting treats.

So today, she's back in Pull Ups. She wants to wear her alligator underpants, Captain Hook is afraid of alligators, you know. She LOVES her underpants. I told her that she's all done potty training and that she can't wear her underpants. "But I want a chocolate chip!" No, you aren't ready to be a big girl. Once you decide then you can have your underpants on. Now you wear a Pull-Up which is a diaper so that means you are a baby and not big.

"Mommy I am BIG."
"As soon as you choose to use the potty, you will be big. Now you are a little."
-Did you know that little girls cannot wash hands by themselves, choose shows, tell mommies what to eat????

"Hey Mommy, I'm big."
"What are you wearing?"
"A Pull-up".
"Ok, you are not big yet."
Ok, so I am aware that what I am telling my daughter goes against all of Huggies' diligent advertising. Swimming up stream I am. Their theme song, "I'm a big kid now" does not apply here. The bottom line is that a Pull-up is nothing more than a reconfigured diaper that all three of my girls use as a crutch.

Alexa chimes in, "Elaina you can't have your birthday party!"
Of course she can have her birthday party, it just won't be a big girl celebration. It will be a birthday party.

So here we are at 9:57am on day 5. The strong-willed child has a pull-up on and the ball is in her court. Secretly I am hoping that she likes this new found control and makes up her mind to continue the journey. (Won't my parenting skills really shine then? Brilliant I am.)

Realistically, I realize that I lost.

Potty Training

2010-02-28T12:46:00.003-05:00

Friday was the day. Da da Dummmmm. Elaina was out of diapers and we embarked on the dreaded time in parenting. Potty Training. I don't know if you have picked up on this by previous posts, but Elaina is a cunning, cute and smart little bug. There is nothing that she does that isn't calculated. Imagine the dread Allan and I feel knowing the time was drawing near.

Thursday morning Elaina was down to 5 diapers. I showed her the stack and said, "tomorrow we POTTY TRAIN!!!!!!!!!!!!!!!!!" I was seriously proud of myself for all the excitement I could muster for something I totally hate to do. My sweet daughter informed me that she didn't want to go to school or Vacation Bible School (2 things that require potty training) and that she's decided that she doesn't want to be big either. Then she looks at the diapers and tells me that we still have 5 more.

I tried to counter with: you don't have to go to school, you will always be my baby if you are potty trained, whatever you want to do sweetie. In my mind I was going down a list of ways to motivate the head strong little bug. Ok, a list of bribes. I really was formulating bribes.

The notion of always being my baby at her convenience seemed to stave off the opposition for the moment.

Just before bedtime I was online looking at underpants and called Lain over. At first she had to go save the castle, but she couldn't resist the kissing goldfishy underpants on the screen. She picked all her favorites and then said, "Mommy, can I do it NOW? Can I potty train now and can we go buy underpants in the dark?"

"OF COURSE you can and we can go to the mall in the dark to buy underpants".

Off we run to the potty where she sat down and peed. Homemade confetti was thrown, and there was much rejoicing. Lain looks at me and says, "now can we go buy underpants...in the dark?" Phone calls made, a chocolate chip was given. The bigger bugs were left in a puddle of tears as they wanted to go on this special trip. Lain looks at both of them and says, "Emmylexa it's ok. You can't come. I have to go on my special date with Mommy to buy underpants....in the dark." Off we went with Dumbo (who also needed underpants) leaving Daddy with the sulky twins.

On the highway I hear from the back seat "UNDERPANTS HERE WE COME!!!!!!!!!!!!!!!!" Once we came home there was a fashion show, a bath and bed.

DAY 1: Elaina remembers her underpants and we were off. Except that she didn't want to sit on the potty. So she had 2 tiny accidents for which she told me that "thems surprised me". As she was eating her breakfast she had a flood. She looked at me and said, "Mommy it's happening again! This isn't working. Now I can't eat my dinner." We talked about just learning and that she needs to try the potty. Throughout the day we did some better and she was into it.

DAY 2: There were signs of some improvement and ability to control. However, she was all done with the training after nap since she needed to poo poo. Since she tends to willfully control that area of her life we aren't going to force the issue and let her go in a pull up. At one point we just made cookies and she wanted another snitch. I told her I only give snitches to those who obey Mommy and sit on the potty when asked. Guess who ran to the potty, sat on it and put pee pee in it within one minute???? Thankfully that was my last interaction for the day since I had to work last night. Allan was left wit h the illustrious honor of creatively trying to encourage her, guide her, bribe her all the while let her think she is in charge, which is really her favorite thing in life. By the way nothing will work unless she chooses to.

Day 3: Girlfriend really needs to go so she doesn't want to try and put her pee pee in the potty. We tried before church, nothing. She wore a Pull-Up to church, she kept it dry. She watched and entire Mickey-Mouse Clubhouse on the potty. Nothing. She drank a sippy of milk and had Lemonade at lunch. Refusal. We began to tease her (she likes that). "We will put you in the snow until you are potty trained." "No you won't because that will make me miss Ava."

"Elaina, your baby just told me that she wants you to show her how to potty train." Elaina puts her on the floor, pretends she pees and is all done.

"Elaina, your baby just told me she wants you to potty train." She hold her baby up to her ear and says, "She said no potty train."

"Hey girls I guess if Elaina can't sit on the potty and obey like a big girl then we will have to treat her like a baby." Then I explain to the big bugs what that means, including that she can't get out of the room because babies don't move. Girlfriend comes into the room with her baby saying, "watch Mommy. Watch, Daddy." She proceeds to hold her baby's hands and makes her walk. Then she looks at us and says, "See she walks. She can move."

Finally while writing this, she had a drip in her underpants and stopped the accident. Refused to sit on the potty. Then asked for Mickey Mouse Clubhouse. (SURE!) She sits on the potty, drinks more lemonade, lets out a dribble and oh the celebration! I told her the more pee pee she puts in the more chocolate chips she gets, so at the Mystery Mousekatool, she should try again. She runs to the potty and says she can't b/c we forgot to empty it. (Personally I think she likes to make us run around like idiots.) Fresh potty. Child sits and pee pees! 2 chocolate chips!

Playing child. "I feel my pee pees coming out." Run to the potty, false alarm. Play. "I feel my pee pees coming out." Run to the potty (times 5 Bentons). Oh the celebration!!! The Joy!!! Now we get 2 chips for pee pee and 1 for feeling pee pees and running to the potty. (It's the take care of Laina chip.)

Playing child. O, "I feel my pee pees coming out!" Run. Sit. Pee pee. Raucous Celebration. Three Chips.

Somebody is eeking out the pee pee to get the maximum chips I think. So I am left to wonder, who really is letting who think she is in charge?

Catching Up

2010-02-23T11:37:00.003-05:00

This weekend my girlfriends from college flew in. Aptly timed after a surprisingly difficult and emotional week. There is something so comfortable about being with people who have known you forever. It's easy. We don't see each other very much and we don't talk all the time. But they are the kind of friends where that doesn't seem to matter. We meet each other where we are and off we go. What was unexpected was that I found how nice it was to connect to people who knew me before all this loss. They are the same ones who have seen me through it too. I could look through that tunnel and see even though I am sad. I am still me. I could also be reminded of simpler times and easier days.

One of our friends has a sweet baby girl. It was wonderful to see the bugs pour out all that stored up nurturing on that sweet baby. I think the baby rather enjoyed all the attention as well. They all adore babies and were happy to attend to her needs.

On Sunday I was making bracelets for a fundraiser and the bigger bugs we "helping" me. For a few minutes I felt like everything was normal. It was like a breath of fresh, Spring air.

Managing the emotions of all the family members is and I imagine, will be a constant struggle. Some days we get through nicely. Others there is a lot of turbulence. I know He is there every step of the way, so that is helpful. Honestly, there are some days that I want to not deal with all of the chaos that surrounds me. That doesn't mean I don't love those bugs like crazy. It just wears on me some days.

When Emily and Alexa were babies there were some really tough days. By afternoon I would think that today was a wash and tomorrow is a new day. So instead of fighting against the forces to be reckoned with (ie napless infant twins), I would roll with it and scrap the plan for the day. Once I figured that out I did much better. I am trying to relearn this lesson now.

What is tripping me up is that I can't seem to get my emotions to be on the same "schedule", so to speak, as that of the bugs. Just when I am relishing the feeling of normal, someone inevitably will cry out, sob or whine about Ava. Sometimes we just talk about her. And sometimes we use her death as an excuse to get more attention. It's a tricky balance to try and figure out what the motivation is and how to handle the situation the right way.

Last week I found out for certain that after combing the literature there has never been any other children reported to have the disease and the progression of it like Eric and Ava. That's a mind blower. The hearing loss does not fit any other pictures. Somehow that knowledge comforts me and bother me all at once.

I wonder what God has planned for us. But I never want to peer into the future. I am following where I feel He leads and pass through the doors He opens. This journey is just getting started. It's daunting. Allan and I are committed to follow through even when we don't really feel like it. It's actually a neat way to live. Not really fly by the seat of the pants, since we are following His path. But it has a tendency to feel seat of the pantsish.

Intentional

2010-02-16T09:28:00.003-05:00

Things have been busy around here, I'm just not quite sure why. Sometimes I see that I feel busy, but am spinning my wheels and getting nothing done. The weight of our loss is beginning to resister. It has to and it needs to. So that is good, I suppose.

I find that I am more willing to follow God without argument right now. I have no extra energy to think that I can do this on my own. I find if He opens a door, so to speak, I just walk through it, no questions asked. I don't waste time worrying about the 'what ifs and whys". I just proceed. If the proverbial door is closed, I barely notice. It's actually nice. I spend a lot less time analyzing and over thinking. Two things I usually spend too much time on.

The problem is that I know that once I get my feet on the ground a little more I will begin to protest more. Why is it that when we are in a crisis that we see how dependant on God we are. But when things are peachy keen, we trick ourselves into believing that we are in control? I struggled with that after Eric died.

As a grasp and cling to stay in the moment I find that I am focusing on intentional living. The one aspect of my life I am focusing on is to face whatever is holding me back. Am I afraid of a memory? Do I not want to go somewhere or to a function because it's "hard"? Well that's not an excuse. Honestly, living every day is hard right now. the laundry is hard, the grocery store is hard. The kids are hard. Reminders lurk under around and behind and upside down every corner. Why hide from it? How is that living an honest life?

I think about how people are always trying to placate the reality of a painful situation with colloquial phrases. Then there are the phrases that add a twist, catch on like fire and become colloquial. When you are smack dab in the middle of grief. There's no need to sugar coat it. Death stinks and it's hard to deal with. BUT if you don't deal with it you find yourself rolling in a sea of hidden memories and watered down emotions.

I can not choose to live like that. Sometimes I think it would be easier. Then again I would just be trap myself in a life of memories that are "too hard" to face. As time wears on the grow and grow and grow. Then suddenly my cushy safe zone would become a dark and paralyzing closet. Why would I want to go through this world paralyzed my my sorrow and anger?

The world is full of sin and everyone gets some form of a raw deal at some point in life. Maybe we should embrace what we view as an injustice and face it head on. I am trying to. But I have to take it in small chunks. If I bite it off all at one time, that could be detrimental. When I notice that I am back peddling and cowering in a safe little cave I think about what I am trying to accomplish. I ask God to help and I pull myself up by the boot straps and put one foot in front of the other. Some days that all I can do. Some days I just need feel all my sad. Some days I can laugh and have fun. Some days I have to go to the place, do the thing, or see the people that I have somehow attached some strange and usually not so realistic notion to. It's never easy. Not at all. Sometimes I fall apart. However 95% of the time I realize that there is some blessing and something positive and useful that comes from the interaction I would so rather avoid.

Bracelets

2010-02-10T16:48:00.003-05:00

I wanted to tell you about a new idea I have. I've decided to run with my bracelet idea and will make bulk orders (10 or more) of custom order bracelets to honor a loved one, commemorate an event, to unify in prayer, or to use as fundraisers for a group. The plan: we talk about charms, and color choices for beads. I make the bracelets. I would like to keep the cost to $5.00-$6.00 a piece, it will depend on the cost of supplies. Then you can give them out or sell them and give the recipient some needed funds in a time of crisis.

Check out my shop at www.etsy.com/shop/4ladybugbracelets for ideas. So far I've been honored to make butterfly charm bracelets in support of....., teddy bear charm bracelets in memory of....., and am working on rose bead bracelets to commemorate a special birthday.

Making these bracelets has brought me joy and seeing them worn brings me comfort. I would be honored to help others feel that same camaraderie.

These are the things that I am thinking about on a snowy blizzard day. I am trying to focus all this unfocused energy on something good.

The Ladybugs have Landed

2010-02-08T16:58:00.003-05:00

It's amazing to me how much happier it is in the house when the girls are in it! What also amazes me is that I feel like that especially when I spend a day breaking up fights, putting out squabbles and the incessant whining.

I guess when they say that absence makes the heart grow fonder, they really meant that.

I guess that they went away for the weekend is a good thing, since I think I am going to be trapped in the house with all the bugs all week. School was closed today and they are predicting another big storm to roll in tomorrow evening. Here in DE some streets are plowed, you just don't know which ones are. Fortunately for us the way our house sits gets pretty much full sun, so I have been spending my days cheering on the melting efforts. We have run out of places to put all the snow!

Our house is full of dress up and dances today. Last night in the car Elaina serenaded us with her "songs" THE WHOLE WAY home. (It's an hour and 15 minute drive to Grandma and Grandpa's in good conditions). She was singing her "Ava and Eric" songs. TO which I was chuckling. Some of the lyrics were, "I miss Ava I want she to come back, I want she to come back today. I have Ava her Highness. I have Eric his Highness. Emmylexa are my sisters." We were shocked when we were asked to sing with her. I had no idea I was going to be quizzed on her made up songs. So I asked her to teach it to me. Wouldn't you know that kid sang the same thing and the same tune? So then I really felt obliged to pay attention! I asked he to sing and Emily and Alexa song. "I can't Mommy, I don't have any of those songs. I only have an Ava song and an Eric song." -S-I-L-E-N-C-E- (rejoicing in the front of the car...premature rejoicing....) "Mommy! Oh I DO have an Emmylexa song. I didn't know I had one of those!" Cue the music....

Lain has been grappling with the notion of Heaven and the permanency of it. I comes out in her music, her play and her bedtime questions. We are trying to help her understand that it's not a bad place, and that it's not a threat. Right now I think she feels like she is going there soon. Such hard stuff to understand when you are two. I try daily at 36.

Today I sat on the floor and let the girls play with my hair. I had about 30 bows clips and barrettes in it. It was so wonderful. I love to play with them and see how they think and feel. To look into their eyes and see how beautiful they are on the inside and the outside. They are wise beyond their years and still retain their childlike wonder. I am so very grateful for that. I want them to feel like kids because that it what they are. They have big stuff to handle now and will throughout their lives. I am glad they can just be themselves and not be too big too fast.

Snowed In

2010-02-06T11:09:00.002-05:00

This weekend my parents took our Ladybugs to their house for a snowy Grandma and Grandpa weekend. This is the second time that they have been away from the house when we are home. The first was while Ava was in the hospital. Even then we weren't "home". We just slept here. They weren't gone for too many nights during that time. We quickly realized that we needed to tuck them in and see them in the morning.

It's quiet and lonely here. I should enjoy it. I do like hanging out with Allan. He's my best friend. When my Mom and Dad offered to take them I had all these notions of running errands that are no fun to do for us or for them. You know the ones that you have to go to 20 stores for specialty items. My goals are always more than what can be accomplished. Of course I want to clean out toys that we don't need anymore. We also need to clean out Ava's room. Something I've tried to do several times. I didn't think it would be as bad as it was to clean out Eric's room since Ava never really got in to it. She never had a chance to sleep in the crib in there either. Yet I find myself quickly frustrated and giving up each time I try.

I find it curious that the day after Ava died we were inundated with a big snow. I vaguely remember that there was snow but I didn't realize there was a lot of it until people started to make comparisons on the news. The snow kept us tucked in our house, cozy warm and together. We could do what we needed to do without the distractions and temptations of the outside world.

So here I sit. All these tasks before me and I realize that we are REALLY snowed in. The drifts are up to my hips and shoveling is slow going. Our little snowy ladybugs are safe and cozy with their Grandma and Grandpa. No outside distractions and temptations. I think God is telling me it's OK to let my guard down and do what I need to do. Part of me fears that too.

At Eric's service our Pastor prayed that we have "the courage to grieve". It struck me. It stayed with me. I didn't understand it. In my darkest hour, I clung to it. That day I learned just how deep dark and scary grief is. I found out WHY it takes courage to enter into such an emotionally draining and dark time. I remember it. I felt like I was in a black pit scratching my way to the top. Afraid that I would never ever get out. It was then that I realized that the courage I needed was to face it, head on and trust that God would carry me through it. As I write this I realize that this is why I never wanted to be in this position again. Not because I don't trust that God will carry me through even when I don't think I can see or feel Him. It's because that level of pain and emotion is just plain hard to deal with.

It's like the black smoke monster in LOST. The cast members run and hide from it. Some boldly stand there and look into the face of the evil before them. We are sinful and full of evil. We have to stare our ugliness and sadness between the eyes. Acknowledge the thoughts that accompany them. Cry out and know that "Jesus is light. In Him there is no darkness." He's always there on the other end to offer a hand, pull us out of the pit and bring light into our lives once again.

Part of the Club?

2010-02-03T08:12:00.002-05:00

After Eric died I felt like I couldn't talk about my experiences being pregnant, having a c-section, breast feeding, and diaper changing adventures. If I talked about it then I would always be faced with the uncomfortable follow up questions which inevitably lead to "my son died". Then there was the look of shock, horror, embarrassment which would lead me to have to try and make that person feel better about my circumstances.

After waiting my whole life to be a Mom, I was no longer a part of that club, but a new not so wanted one. The "Mommies without a Mission" club. Membership is free, but you pay a dear price to get in.

Then, I became pregnant, and miscarried. THEN I became pregnant. Ten and a half months later our sweet Emily and Alexa were born. I WAS A PART OF THE CLUB!!!!!!!!!!!!! It was great I could talk about all the things I wanted to and only I would know of whom I was speaking. Let me be clear, I never really "hide" Eric. It was more like I had to put a lot of thought into how far do I want to take this, how do I approach this, how do I answer this question.....It's tiring. And yes, it still happens today. It probably will for the rest of my life.

So now I have 3 beautiful buggie babes. LOTS of experience with breast feeding, diaper changing, and yes ever c-sections (4). But I struggle with not being a part of a new "club". I am most definitely a "Mom with a Mission" (although I admit that I might be a bit aimless from time to time). However, I am not in that "Mommy of 4" club that I seem to have always wanted to be in since Junior High. (Back then my children's names would have been: Justin David, Branden Michael, Katelyn Marie, and Megan Patricia.) I'm trying to be OK with that. I'm different now. I'm more experienced, have a deeper faith and more mature. I try to tell myself that I have a good size family. I do. I really do. But I struggle with the need to have "credit" for all of the children that I gave birth to. When I hear Moms say "I have 4 kids, 5 kids etc" with a sense of pride that is sprinkled with the craziness that quickly ensues I naturally get a twinge in my heart. Moms who have lost know all too well that twinge.

To take "credit" for my 5 babes means that I have to make someone uncomfortable. Then I have to try to show them that I am OK with the life God has blessed me with. Naturally then they should be too. Here's the deal. I did nurse 5 babies. I did have 4 c-sections. I did have a surprise pregnancy. I did have 2 miscarriages. I have to deal with death. I did have a set of twins. I did change a baby boy's diaper and gotten peed on. I did have 4 kids under five at the same time. It may not be in the way that I dreamed of at 12, but God gave all of those gifts to ME. Little ole' ME. I am immeasurably blessed.

FEELING

2010-02-02T10:13:00.003-05:00

Over the last few days my mind has been cluttered with half thoughts which has rendered a writing block.

Yesterday I got an email from a family member. In it she was talking about the tides of emotions we are feeling in our home, times five. Her prayer was that we could manage those tides and that they would be in sync. Her email put voice one of the thoughts cluttering my mind.

I feel like I am constantly putting out fires. You feel that way as a Mom anyway. I like it sometimes. Lately the emotional fires are tough to manage. We all have good days and bad days. Everybody does. Sometimes, when I am in a "good" place I don't want my vibe to be interrupted by the grief of someone else. I hang on by a thread some days. It's a delicate balance at best.

Yesterday was one of those days. I FINALLY started to feel. Each start to what should be a "normal" routine was interrupted by illness. Yesterday was the first day that it wasn't. I completed my first full weekend back to work. Allan has been getting up at the crack of dawn to get to work on time. I'm up late, he's up early. Thus, I'm up early too. The girls hear him up so they are now getting up an hour earlier than normal too. Leaving me with no time to be alone and little reserve. Ahhh, the good old days.

Allan's commute changed the week before Ava was born. So I would get up with him to make sure I could shower, feed Ava and get all other parties ready for the day. All perfect plans never work out so well. Someone would inevitably awaken to see Ava or Daddy. It seems we are back in that routine. But with a gaping hole.

I took the big bugs to school yesterday. As I was leaving with my little bug I felt like I was forgetting something, my arms were not heavy laden with kid paraphernalia. I looked around, saw Lain with me and realized I was missing a car seat. Usually if Lain came to drop off, that meant someone was not home with Ava that morning. Those reminders just plain flat out stink. But they are necessary to feel the loss.

I was feeling like I was on a good track by the time I got the bugs home. Emily was in her room crying for me. It sounded like a real need, not a typical frustrated girlie whine. She fell apart missing Ava. There on their beautifully clean floor was a picture of her feeding her sister. It took her by surprise. My heart sank. I hate that they have to deal with this. I know that it's God's plan and that the outcome will be Glorifyingly good (like the word I just made up?). But I can honestly say that my mother's heart hates the process for them.

I don't stop it. I let them all be where they need to be. They all have their own way and their own needs. They have to feel too. It's so HARD to FEEL.

It's important to do it. If I don't I'll never be able to feel other things. Other joys, sorrows. I don't want my life to be a series of muted experiences where I am afraid to FEEL. How can I experience the Love of my husband, my family and my Lord when I haven't tackled the underlying pain? It's impossible to feel free to enjoy when there is a weight so heavy that you are tethered to the bottom of a pit. That weight gets heavier an more insurmountable as time passes and the taboos creep in. I don't want a life like that for me, or for my precious bugs.

So we are exercising lessons in feeling. Boy does it suck. But I can do it and they can too. In the middle of the darkness and pain is a ray of light. Gods hand is there to guide us and be our life line.

At work I purposely went to the floor that Ava was on. Why should that be taboo? Why should I make something harder than it is? People don't go to hospitals because of the reminders they hold. I did the same thing. I couldn't even go to AI in my mind after Eric died. Why? It's just a place. He would have died if we were at the beach. So I intentionally broke those barriers and REMEMBERED. Yeah it was poignant. Fresh painful memories are. But if we lean on God and use His strength to find the courage to remember that which ties us to that pit, the poignancy lessens and the chain becomes looser.

Sometimes walking a dark walk requires blind faith and courage to revisit the shadows that tie us and keep us from moving through the tunnel to the light. It is amazingly difficult. There really aren't many words that can accurately describe those feelings. We all have them. We all will experience them as we go through our lives. Spoiler Alert: The only guarantee in our lives is that we will die. People we love will die. Some will die when we think it's socially acceptable. Some deaths will be shocking. Some tragic by societal definition. Yet somehow it's always a surprise and a shock. How could God do that to ME??? God does not "do it" to us. We just die. So I ask you, do you want to just die or do you want to live in Glory for ever? That part is your choice. I've made mine. Because of it I sit here and write, I take a break to do the "Hot Dog Dance" -Goofy style, I can FEEL the good the bad and the deep dark pain. I have a full life and vast hole in my heart simultaneously.

Dress Up

2010-01-30T10:17:00.004-05:00

WE ARE ON THE MEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It is so nice to see the Bugs play together like they haven't seen each other in years. I have officially swapped throw up buckets and tea cup for putting ribbons in hair and helping each princess become more beautifuler.

It's a cloudy, grey and cold Saturday, but for the first time in a long while I don't feel like the weather matches my mood. I can't express how much I enjoy the sounds of clomping dress up shoes and far off sounds of Royal games.

Disney didn't only put a "bookmark on our sadness" (to borrow a phrase from a dear childhood friend), but it increased the imaginative play and fantasy in our house. Our games are full of swashbuckling fairies trying to save Wendy from Captain Hook. (I never said the story lines make sense). Our trip opened up their worlds and took them out of the rut of constant grieving into trying to live in light of grieving. It's a tough transition to make. It involves letting go and moving on. But when Captain Hook has to fight Peter Pan and Sleeping Beauty, Cinderella, and Alice, you really have no choice.

Work?

2010-01-27T22:38:00.002-05:00

Last night was my first night back to work. It was short-lived. I thought I was coming down with a cold but 1/2 hour before Iwas to leave I developed a fever. I left my shift early only to get a text from Allan saying that Alexa just threw up. By the time I walked in the door, she had thrown up a second time. About 10 minutes later, Emily was throwing up. And so it went all night long. Every ten minutes or so Allan was in their room tending to their needs. I tried to get out of bed to help, but couldn't.

My sweet husband only slept for an hour last night, interrupted. Every time he got tucked in someone would cry. Part of the problem was that they weren't keeping anything down so we couldn't give them anything to help ease the discomfort of the fever. By 4am I went into their room and tried to comfort them. I cold barely move. I laid down on the floor thinking that if I stayed in there Allan could get some sleep. Alexa got out of bed and rubbed my leg. My sweet little bug.

So we made a trek downstairs to the couches. I put on a show for them so that they could focus on something other than being so miserable. It lasted about a half an hour to 45 minutes before Allan came down to bail me out. i was in over my head.

Allan is exhausted. Caring for 3 sick people and one well rested 2 year old on no sleep is not an easy task. But he did it and all the laundry that comes with it.

By the end of the evening Emily made cameo appearances off the couch to tuck me in or give me a sip of Gatorade. Alexa soon attempted to follow suit. They had one bite of banana before bed and kept it down. I hope they stay on this upswing.

While Allan was bathing Lain the big bugs and I had a great talk about Ava. It is one of those things that I will forever cherish. We have been so busy and preoccupied I forgot how important moments like those are needed.

During one of my many baths in my feeble attempt to get comfortable, I began reading a grieving devotional book. It wasn't long before I got pregnant with Ava that I donated my large volume of my grieving books. So here is one I never read, on my nightstand. (It would be safe to assume that some little hands unearthed it from my night table drawer). I thought, well I have nothing else to read. Right there in front of me was a devotion on when to move fast and when to slow down. The scripture reference was Ava's scripture in Isaiah 40.

Low and behold, what have I been struggling with lately? The flow of our lives, needing things to happen, the need to keep on going. I fear that if I loose momentum then I will never reach my goals. But "They that hope in the Lord shall renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint."

Right there on my nightstand for who knows how long. Ava's verse is actually ours too.

Routine

2010-01-25T09:46:00.003-05:00

I made our weekly calendar out last night, something I haven't done much since November. I never knew what was next. It's full of our regular routine. Alexa noticed it first thing this morning. The days have School, Mommy Work and Daddy Work. The calendar is normal, but I feel anything but.

I realized that half the school year is over and I don't have a routine. I tried to go back to work after Ava was born, but then she was hospitalized. I've lost 5 months, and seemingly oh so much more. I had all these grandiose plans of what life would be like when bigger bugs went to school and Lain and I would have to fend for ourselves. I then found out I was pregnant and those thoughts changed. So now I guess we are somewhere in between. Every time I hear "you have your hands full" I politely nod. I do. We still have the business of our lives, but my hands are far from "full".

Whenever I feel overwhelmed by the bugs, I feel a twinge. Like, is this still overwhelming? It was way harder in the fall. Ava never really got off of square one, nor did I it seems. Yet here were are. Allan is officially back to work. I start tomorrow night. Those 5 months are blurry and yet we are right into the thick of it.

It's hard to think that it will be fine since I don't feel capable of meeting the demands to those requiring my professional assistance. I will have to handle it the way I did after Eric died, I suppose. I will just keep trying. I will pray and someday I may feel competent. I just wish I could make bracelets and build up the Foundation and Mommy those I still have.

Bracelets and Revelations

2010-01-23T21:54:00.004-05:00

I took the plunge and set up an Etsy shop for our prayer bracelets. I am really excited to be able to share these with you. Making them brings me joy. I hope to be able to make some for someone else in need. If you would like to check it out please go to http://www.etsy.com/shop/4ladybugbracelets.

Today I had a lot of time to think about many thoughts. Some were not so pretty and some were not so focused on the ugliness of my humanity.

First of all I watched our surviving ladybugs. Today they played, fought and created elaborate games with a cast of new characters as gratis Disney. As I watched them I found myself amazed at how much they have changed while I've been checked out so to speak. I can't say that I am "checked in" yet, but I am trying to be present.

I am so proud of those little ladybugs. They adore each other. They grasp so much and yet they fight and cry about the most mundane of things. Really that's OK. It's what they should be doing. In the midst of our not so normal life, they are acting normally.

Specifically Elaina was cracking me up today. She seems to have exploded developmentally. Her speech has always been clear and top notch, but today I noticed her sentence structure is even more complete that it was the other day. I love how you can joke with her and make and off the cuff remark and she will have a quick and often witty retort.

*BIG ELAINA NEWS* Today she told me that she wants to potty train. She knows that she's almost out of diapers and Disney is over so we have been gearing up for it. I need her to be willing. Potty training twins who were leery and caring for a 3 month old was really not fun by any stretch of the imagination. However if Lain is not on board, potty training a head strong nearly 3 year old while Mommy is grieving will blow that out of the water.

While I am THRILLED at the prospect of saving myself 40 bucks a box of diapers, I am sad that I am rapidly moving out of the baby department. Before we became pregnant with Ava I noticed that things around her were becoming easier in some regard. Then they got harder the more pregnant and tired I became. Then Ava was born and they became complicated. As her life progressed the more complicated things around here became.

Now we have these 3 awesome ladybugs and I seem to have missed a year with them. So as we try and get back to our regular programming, I am noticing that I have no more babies. Baby items are going away. All the paraphernalia and now soon there will be no more diapers. Now listen, I've been changing diapers for 6 years so I'm not too heartbroken to be done with that. It's just that it wasn't my choice to end that NOW.

Today was an opportunity to try and sort out some thoughts. I realized that I know how I feel about death and where I stand with God in all of it. I know realized how deeply sad I really am and how I just don't know what to do with it. I'm not confused about Ava's death. I'm amazed by her life. The sorrow does not have language. That's tough.

I also realized that I have learned so much about how to support others in the middle of chaos. So many of you have come forward to support us in ways too many to enumerate. I need to take heed and step outside of my routine and do the same for another as the opportunity presents itself. I think I fall short in that department. I am in awe of our support and so incredibly blessed by you all. It truly is one of the reasons that I, personally, can keep on. Through all of you God has worked in our lives in amazing and wonderful ways. Thank you.

First Day of Normal?

2010-01-21T21:53:00.002-05:00

I was all geared up to try and get a regular routine going today as Allan was going back to work. Then I had a dentist appointment. My parents came over to see the bugs (at bugs request). Allan didn't make it very far in the work day. He got pretty sick and has been in bed or on the couch all day. I'm worried about him being so sick, but I know he will be ok.

This is throwing Elaina off though. Tonight there were lots of questions about Ava again. She was talking about her boo boo that she got on her knees in Disney. She was talking about God healing them. I told her He was. She looked at me and said, "Now?". I told her yes, He was working on it. She said, "God helped Ava too?" I said yes. Then with a huge twinkle in her eye she said, "Her is coming back to us?" I had to tell her no, Ava is never coming back. She was deflated, but not for long. Apparently Emmy had an interesting animal on her jammies.

When I was tucking her in , she did her usual questions about Ava in Heaven. Tonight she juxtaposed her questions with Daddy's sick. I told her that Ava's body was broken and asked her what kind of sick Ava was. She said, "Pink". I told her that Ava's WHOLE body didn't work. Daddy is sick but he will get better. She wanted to know why we are here/ I told her that God has other plans for us and it's not time for us to die. She said, "Ava has a new body." I said yes, but our bodies are ok. Mommy's body, Daddy's body, Elaina's body they still work. "My body still works." Yes.

Alexa asked me today who would take care of them if we had to die. Emmy promptly shushed her. I told them that we would do everything we could to stay with them and that we don't want to leave them. But we would have a plan for them. I told them that I can't know what God's plan is, but I know that they will be ok. I told them that when I was their age I used to wonder what would happen to me if my Mommy and Daddy died. I knew that they had a plan for me and that I would be ok. I know that they would too. Emmy seemed to feel better about me telling her that I would do everything I could to stay with her, but then told me,"I just don't want to talk about that though." I told her that if she ever did, she can ask me. But she can't keep Alexa from talking about hard stuff.

Sometimes I don't want to teach them how to sort out their own feelings, especially since I need time to sort out my own. I wish I could have time to do what I need to do. It's harder trying to keep it together. Sometimes I just want to shut down and hide. Others I just want to hold my baby. Smell her. See her little face and squeeze her finger. I get so sad thinking about how sick she really was. I wish that wasn't her story. I wish it wasn't Emily's story. Alexa's story. Elaina's story. I wish it wasn't my story or Allan's story.

I was realizing that while another child never fills the void of the deceased child. A healthy baby just helps. I am so sad that I can't have any more children. I am glad that the stress of wondering if my baby would live. But it would be so nice to have one more healthy baby. I just wish that would happen, but it can't.

So I wonder what could possibly help? What does God have in store for us? How will He help us ease our pain? Disney was great. It's given the girls a chance to deal with their thoughts while they encrypt new memories. But while we had a break, the grief, always with us, is hitting hard as we try to run the house, care for the kids, accomplish daily activities.

Long Catch up on Disney

2010-01-20T21:33:00.004-05:00

We made it home! I am so happy to be able to use the computer as I wish now. Disney charges $10 a day for Internet access so I took a hiatus from the blog.

Our last three days in Disney were as eventful and fun as the first three. On Sunday we spent the morning in Hollywood Studios. We got a chance to see the Ariel and the Playhouse Disney shows. We were planning on seeing the Belle show as well. However the Ariel show was a little intense and the girls decided that they didn't want to see it. We also got a chance to meet June, Quincy and Handy Manny. Meeting Handy Manny was the most exciting as we got to meet him on my Dad's birthday. The bugs love to watch that show with my Dad and spent a lot of time watching it with him while Ava was in the hospital. They were so excited to call him and tell him that they met Handy Manny on his birthday. It was really cute.

We then had a very blustery lunch and decided that we should high tail it back to the hotel. The bugs were exhausted and fading fast. Despite our sprinting efforts we did not make the bus and had to wait. The bugs made up their own games which involved running around the sidewalk. This game abruptly ended when Elaina fell and scraped both of her knees. Of course it was then that the bus came. Exhausted screaming bloody kneed Elaina and tired borderline ill Emily and Alexa boarded the bus with Mommy and Daddy who never wanted to fold up another stroller again. I was super proud that I packed a first aid kit. As we boarded the bus I told the driver that Elaina fell and scraped her knees. (I felt the need to explain the child was screaming as we got on the bus).

We were getting all arranged (no small task) and I looked up. There was the bus driver with plastic rings for each of the girls. She told me she thought that that may help Elaina forget her troubles. It worked.

Back to the hotel for a rest. Nobody slept. It was one of the warmer days and the pool was calling our names. (Well really just Emily and Alexa's. We didn't want to get cold and Elaina said she couldn't go in because "God didn't heal my boo boos yet". I told her with the band aids she'd be fine. ) The pool was heated. That was a good thing. It was blustery. We were freezing. The spa was fabulous. Once we warmed up we had to get out and freeze. Back to the room for a quick change and new band aids. Off to Mexico in EPCOT for dinner.

We took a circuitous, yet fun route. Boat to the Contemporary. Monorail to EPCOT. The girls loved it. We had dinner, and did a little shopping. I was really hoping to find an "Alice" doll or toy or even Alice In Wonderland book in the United Kingdom exhibit. You would think they would have one there since that was where her meet and greet was. Nothing. Alexa loves her. I am currently scouring EBAY. Then Lain and I rode on the Nemo ride in the sea exhibit. Emily and Alexa were too tired and unreasonable. Lain LOVED the "fishy" ride. I had a great time taking her and watching her eyes light up with wonder. (Bonus no wait we just walked on).

Our ride home was supposed to be uneventful. Wee missed the first monorail and then got to the Magic Kingdom and Resort stops as the firework display was ending. Oh look it was Extra Magic hours in the MK that night. Even the elevators were crazy full. All Allan and I wanted to do was get back to the hotel and get the kids in bed. But no, right there in front of the Contemporary was Peter Pan. A quick meet and greet, hop on the boat and away we were.

Our day was short on Monday. It was our last full day and we were all wiped out. Emily did not sleep well the night before and was still exhausted. She was also randomly warm. We drugged her and headed back to the Magic Kingdom and tried to see things that we didn't before. Nobody really wanted to do anything at all. Despite checking the weather report we did not know it was going to be so windy. $100 later in sweatshirts, the whining stopped momentarily. Allan did go on Big Thunder Mountain with Emily. She loved it. I waited with Alexa and Elaina and had a good time. I was going to ride with my parent swap ticket once Allan and Emily were done. (Lain was 3 inches too short, much to her dismay). Alexa decided that she didn't want to go. Emily didn't want to either. We panned for gold and then I decided that I would go before our lunch reservations. Emily and Alexa decided to come with me. Just before we got on the ride, Emily cried so Alexa joined in and nobody wanted to go. I got to walk across the train. I will never get to ride that ride, I've decided.

On the way to lunch we spied the "Princess and the Frog". We had no time to meet her before lunch. We ate at Tony's restaurant. When we walked in Elaina squealed "Doggie!" She loved the Lady stuffed animals. I made a mental note to get her one. Twenty potty breaks and a yummy meal. One lovely diaper and I was really ready to be all done. It was the one month marker of Ava's death and it was not far from my mind. Somehow I noticed that it wasn't far from the girls either. (They had no idea of the date or the concept of that either, but they were all missing her). During lunch Alexa wrote all of our names, in awesome handwriting, on her napkin. The first name she wrote was Ava's. She showed our waitress. Of course the waitress asked if that was Alexa's name. Elaina kept saying that Ava was in Heaven, but the waitress didn't hear. So she asked Elaina and then Emily if they were Ava.

I piped in to explain that Ava is in Heaven. I then told her that we were on vacation to celebrate our family. (Disney's theme right now is "What will you Celebrate". That did bother me on the trip. I wasn't celebrating per se, but Disney was trying to spin it that everybody who was there was celebrating something. I came up with the celebrate family line to make myself feel better the day before.) The Waitress audibly gasped and graciously left the table. Elaina wound up with a free dessert. As we were finishing up our waitress, who had no prior knowledge of Elaina's exclamation, arrived at the table with 4 stuffed Lady dogs. One was for me. I told the girls that our waitress wanted to put smiles on our faces once she heard about Ava. Emily grinned the biggest grin of the day and said "Mommy it worked."

After lunch we were off to meet Pinocchio, stalk the Princess and the Frog, to no avail. Cry about going on the Monsters Inc Laugh Floor, which we nixed. Drove on the Speedway and piloted a rocket ship. Then we were done. Back to the hotel for a nap and in for the night. While the girls slept we packed. Whoo hoo!

The down time worked and we had a great time on our last day in the MK. We met Princess Tiara and Naveen, and repeated rides on Aladdin's Magic Carpet, Dumbo, Goofey's Barnstormer, baked a cake in Minnie's House, rode the Mad Hatter's Teacups and Winnie the Pooh's honeypot ride. We explored Swiss Family Robinson's tree house and Winnie The Pooh's playground as well. We left the park and got to the hotel for transport by 3 (pickup at 4).

Elaina fell asleep in my arms on the bus 10 minutes before we got to the Airport. Emily was mostly sleeping. So we now have 6 pieces of luggage, a laptop and 3 backpacks. Two sleeping kids and one stroller to push. The $4 on the smart cart was a good purchase. Em and Lain woke up just as we were going through security, Alexa was so proud at how much she helped us by pulling a suitcase. Commence Elaina screaming. She was scared. She wouldn't get down. Emmy was falling apart. (Her medicine was wearing off and she was sleepy). Due to the excitement I forgot to take my cell phone out of my pocket and the bracelet off my wrist. Em and Lex go through security and have to wait to screaming Elaina and Mommy. BEEP BEEP BEEP. Pockets Emptied all the while I can't put Elaina down and the bigger bugs are flipping out that I am stuck on the other side. Daddy clears security. Elaina screams for him. We clear it.

Ok, that took 5 minutes. We collected our things and snuggled those who needed to be snuggled. I put my shoes on with one hand and away we went. Potty break, grab dinner, lots of crying and off to the gate. NOW everyone is awake and happy. Nobody slept on the plane. We landed 40 minutes early. We had to wait forever for our luggage to start arriving. One of our suitcases got stuck and they had to turn off the belt. The bugs were flying around like mad women. Oh look, the only person who can turn the belt on was on break. So they had to reload on a different belt. Away we were at 10:30pm. The girls transferred to their beads beautifully. Unpacking and laundry started. Bed by 1am. AHHHHHHH.

Now if I could have a vacation to relax....

A blow out and a lesson

2010-01-16T21:17:00.002-05:00

Who would have thought that God would speak to me through a blowout diaper in the middle of Chef Mickey. Yup right there, with the grossness on my shirt as I picked up the excited little bug to meet Mickey, a lesson began. First off: DO NOT FORGET THE CHANGE OF CLOTHES. That set us back $80.00. (Elaina needed a new outfit and I a new shirt). Lesson 2: The hand sanitizer cloths I bought at Wal-Mart, well worth the pain in the neck they are to lug around. Lesson 3 is way more God inspired I would have to say.

Our diaper bag handles also broke. We are talking the most perfect bag for a trip like this in size, weight, the way it fit on the stroller and functionality. Broken. I am now over stimulated, over tired and under coffeeed. Elaina was over Miralaxed. I have poop on my favorite white shirt, Elaina is a mess, and Thing 1 and Thing 2 are oh so very curious and tired. They of course had to follow me into the bathroom, get in my way and cry about me throwing out my shirt and Elaina's outfit. We won't even discuss the meltdown x2 that lead to me keeping a broken diaper bag. It's 8:40am.

Off we go to regroup, repack a Mickey weekend bag (yours for only $12.95 with a purchase of $50.00 or more). It's too big and doesn't fit on the stroller. I want to go home. I hate it here and all other things that go into a full blown internal (well maybe not so internal) temper tantrum. I miss Ava. Big bugs are crying, on the Monorail, on the way to the bus stop for the Animal Kingdom. We did not throw out the bag, but yet Alexa is whimpering, Emmy is sad. We now are crying about Ava. I told Alexa that we could make a choice to have a good time, even though we don't feel like it. That we could be in a bad mood and try not to ruin the time for everyone else. I then looked at Allan and said, "Mommy is going to listen to what she just said." He just said. "Good".

Lesson 3: While I was upset about the disruption in my schedule/ "Disney Routine" I quickly became sad about not having Ava with us. It was like an "AAAHHH" moment. Of course they get sad about Ava when something else tips them off. Those feelings are just right there. Once you tap into them that's where you go. For the rest of the day I could approach their grief with a new level of understanding.

Today there was a lot of fun to be had at the Animal Kingdom. We met Pocahontas and Flick from "It's a Bugs Life". We saw the Lion King Show, went on the Safari, saw some tigers in Asia and some fruit bats as well (ick). We came back for a rest and a nap. A rest was short lived as the bugs were wound up. We had dinner in Downtown Disney at Wolfgang Puck Express- Highly recommend it. Emmy was having a sad time. More so than usual for her. Alexa said "It's hard to miss a sister that you love so much."

So beautifully stated. So much more understood where it comes from thanks to Elaina's blowout diaper. (We're potty training that kid when we get home!)

Days 1-3, DIsney

2010-01-15T21:46:00.004-05:00

I an effort to not miss out on all that we are doing in Disney I think I'm going to write it down. It's hard to believe that we got here on Wednesday I feel like we packed so much in that if we went home today, I wouldn't think that we missed out on much.

We haven't even tried to push ourselves and "get it done". We are heading out with tips from awesome friends in had, a few reservations and a great set up from a friend with connections for a parade. Otherwise we go in with a general idea and come out thinking, "Wow that worked out really well!".

We had the privilege to experience the best flight that we ever have taken. This was great as there was a high probability for relocation if the flight was not enjoyable for the bugs. They have never flown before. Really it was all about the gum. Now it's all about the gum and the ability to watch shows on Daddy's IPod.

We arrived early and had no trouble getting to our resort via Magical Express. Little Miss Elaina decided to not nap, since she was so excited. Who cares that she was up since 4am. We got to our room, checked things out, got settled and off to the Magic Kingdom we went. We entered the park in the middle of a parade, which was a great way to set the tone. Then off to dinner at Cinderella's Table. We were told that there would be mice and the Fairy Godmother, but no Cinderella. Imagine the surprise when we were escorted into a photo shoot with the Princess I can vividly remember trying to meet when I was little. Too bad we really look like we just got off a plane and had been up since 4am! dinner was delicious as was the entertainment. We, of course got her autograph too.

After dinner we had to ride her Carousel since she mentioned it when we talked with her. There was no wait anywhere in the park that night. So we not only did that, but we also rode Dumbo, "it's a small world" and met Ariel! (She was confused by the bigger bugs at first and they realized there were 2 of them. That always amuses us.) Then it was back on the boat and off to bed at the resort.

Yesterday morning we were off to EPCOT first thing. We had to have breakfast with the Princesses in Norway at Akershus. It was delicious! There was a bit a a glitch getting in to the park, as Allan left his wallet in the hotel with ID, and Ticket inside. The cast member at Guest Relations was nice enough to reprint tickets for Alexa and Allan without our ID. She told him that he needed to have ID on him. He said that if he had his ID then he would have the tickets.

So we sprinted to the World Showcase. We got there in time to wait for our names to be called, shin splints and all. We had a photo with Belle, and visited with Cinderella, Ariel (who both remembered that they met the girls the night before I was pretty impressed by that), Aurora, and Snow White. I really loved how Belle looked at the bugs and said, "Oh I see we have matching tea cups!"

Then we decided to make the girls ride the boat ride in Norway. They really liked the ride, but hated the theme. I am still in trouble for it. It was a little darker and scarier than I remembered. Not a good move. Whenever there is downtime or something scary, it tips off the fragile emotions that we have and someone cries about Ava. So we decided to press on and find some princesses. We really did not plan on being in EPCOT all day, but the times that the characters were appearing, dictated that we were. So we did. We found Snow White, again, Belle, the Beast, Gideon, Marie, Jasmine, Mulan, Winnie-The-Pooh, Alice, Mary Poppins. Most we happened to be in the right place at the right time. We did have to stalk Jasmine and Alice though. There were no lines though, which was great. I was so amazed at Emily when she marched up the the cast member handling Mary Poppins and asked her if she was doing autographs. So out of her character and so cute! Emmy has taken responsibility for meeting what ever character she can find and getting every one's books signed if someone is too scared to come along.

After the World Showcase we took the girls on Spaceship Earth. Emily and Alexa both hated it as it was too dark. Emmy eventually came around and Alexa will never trust my ride judgement again. It stirred up a lot of emotion in her. So we trudged to see Figment and never made it. We ran into Chip and Dale for autographs and photo ops. Elaina did not want to participate, but then cracked up when she saw Chip tickling Emmy. "I thinks Chip and Dale are crazy. Thems make me laugh." she then laughed for five more minutes. It was great. By that time we were all done. Off to the Resort we went. Hung out in the room for a bit and then dinner at Whispering Canyons in our Resort. Back to the room for bath and then off to the Magic Kingdom for "Wishes".

Ok so the kids are overtired. Emily and Alexa drank TONS of drinks at dinner. Nobody likes loud sounds. We get a great place by the castle- we needed to make sure that we saw Tinker Bell fly out of the castle (mostly for me, but the bugs really wanted to see that too). Things were ok, until we couldn't wait for the potty anymore and sleepy Elaina got glow stick goo in her eye. House of cards, house of cards.

We get overtired Elaina calmed down. The need for potty is growing. Fireworks are getting louder. I grab one bug in each arm and carry them through crowds of people, trying to get to the potty and back again before the show is over so I don't look Allan and Elaina in the mob. Tink flies out of the castle and we all agree it's cool. Then we're off. We made it back in time to reunite with the rest of the family. No child is happy. No one at all. Fireworks over (what I saw was awesome) and Elaina was asleep in the stroller before we got on the boat.

This morning was laid back. We hung out until the girls got restless and off we went to the Magic Kingdom. Today was Emily's day to feel sad. But we were greeted my Daisy and Pluto when we got into the park. We only had time for a photo with Daisy. While we were waiting there was a mini parade. So cool. Elaina loved that. She wasn't too into meeting many of the characters (which should be oh so much fun at our 7:25 breakfast with Mickey et al). Emmy gets Lain's book signed though, Lain really wants that to happen.

Then we took the train to Mickey's toon town. Only a 45 minute wait to meet Tinker Bell, Fawn and Terrence. Praise God for Skittles! I made those last the whole wait. This was the only wait we really had. Then we went through Mickey's house, played on a playground. Then lunch. We ate near Dumbo. There were no tables. An opportunistic Seagull can swooping in an stole Elaina's hot dog in one bite. A cast member working Dumbo gave us a voucher for another one. By the time we got that it was time to make our way to our special seating for the 3:00 parade. (Thanks to a friend of mine!)

Our seats were awesome. The girls got to play with Hula Hoops while they waited as well. We caught the tail end of a show in front of the Castle as well. The parade came right next to us and Emily got to high five EVERY character that came by (except Captain Hook and Jafar). Can you blame her?

Everyone was getting grumpy before the parade, but not anymore. That totally turned them around. We decided to check on Pooh's ride. Fast pass obtained. Off to a visit at Minnie's house (Elaina was talking about it all day). Then Goofy's Barnstormer. OK our Kids LOVE roller coasters. They were WIRED and ready for more. They all want to go on it again. (It was pretty cool especially for a kiddie coaster). Maybe when we come back they will be tall enough to go on Space Mountain with me! We ran through Donald's Boat and then off to Pooh's ride. Everyone loved that too. After this ride Alexa told me that she really misses Ava, but she's not crying, just missing her. Why stop there? Mad Hatter's Tea Cup ride. The bigger bugs decided to try and really spin the tea cup and say boo to me so that I would be scared. (This steams from Uncle David liking to get me dizzy and scaring me when were little.) Then off to Alladin's Magic Carpet and time to head back to the Resort. That's when we stumbled into the Dance Party parade. Conga in the streets! The girls loved it.

Now all are tucked in for the night. We have been talking about how it's ok to have a great time and not be sad all the time. It is. We are learning to have fun in spite of our grief. The grief is real and just under the surface, but the fun is real too.

And We're Off!

2010-01-12T22:21:00.004-05:00

We are on our way to Disney. On Sunday night there was a benefit concert "Music for Memories" at our church to help defray the cost. The artists were The Junebugs, Adam Randolf, and Caitlin Jane. (Allan's good at all the links and stuff, so he'll do that later). I have to tell you how honored and blessed we all felt during that concert.

Honestly, the thing I was most excited by was to see the potential of our Foundation unfold before our very eyes. I kept thinking how I can't wait to be able to bless another family as we have been blessed. How the Joy-Hope Foundation will hopefully give other families whose children have died a chance to get away and begin to build new memories amidst the sadness.

It gets you out of the stressful day to day struggles and gives you something to focus on. Something positive. I know that that pain won't be gone. There will always be a mark, a twinge. But the agony dissipates. A vacation in the throes of the agony gives you a breather to move on when the weight of the day presses down. I can see our little ladybugs starting to crumble. I can feel that I am too. Allan is the rock right now. We need that. It will fluctuate. For now it's him.

To see the gleam in their eyes and hear the excitement in their voices is enough to recharge and move on to the next phase.

Tomorrow, Ava would have been 5 months old. I guess since she can't be with us a good way to celebrate her is to begin to rebuild our memories, to take a step out in life as the Benton's after Ava. It's a process of redefining and assimilation. We are called to it. We can do it, even when I just don't think it's possible.

For my own need to stay on task I am going to list what I want to work on when we come home. I'm in the phase of grief where I think it and then can't remember what I thought. A day seems like a week and I can't remember yesterday. Right now our lists have lists. Here's a new one: finish thankyous, work on Foundation some more, get Esty site for bracelets up and running, Allan go back to work, Amy go back as well. Go to the dentist, make well-child appointments for some bugs, clean out Ava's room, unpack, do laundry, learn how to "run" the house again, and try to train this old, out of shape and weary body how to run Ava and Eric's 5K. OK it's out there. I must be accountable!

For now, off to Disney to meet some Princesses, see some tigers and giraffes and Tinkerbell!

Results

2010-01-08T19:05:00.002-05:00

Just when you are going along swimmingly, the phone rings. (OK, in all honesty we weren't too swimmingly today. The girls were bugging each other all day and Elaina was having a rough wake up from nap. Tears, needing to eat dinner practically on top of me, wanting milk, no I don't, yes I do. You get the chaos).

OK, now the phone rang. The caller ID said Nemours Foundation- an ID we would rather not have to deal with ever again, in all honesty. It was Ava's Neurologist. I extract myself from Elaina to take the call (cue screaming teething 2 1/2 year old in the background).

Ava's results from the muscle biopsy testing that was delayed is in. Our dear sweet baby girl not only had a Complex IV Deficiency, but a Complex I as well. Apparently Eric did as well, but we didn't know that until today. Her mitochondrial depletion in muscle studies came back. Ava only had 7% of her mitochondria. She was 93% depleted. Eric was 99% depleted.

I knew it was bad. DUH, do I have two of my five babies? I knew that Eric's results were so incredulous that the Geneticist at CHOP wondered the validity of his testing. They did not think that he should have even been alive at birth. So folks, here it is. We have two awesome kids in Heaven who seemed to defy some odds.

How do you live with only 1-7 percent of your energy makers? Why do you live that way? This news is so fresh it hasn't even sunk in yet. I'm sure it will take a long time to get through some of the questions that are forming a funnel cloud in my brain.

We are so glad to have the opportunity to meet these heaven bound bugs, but right now I wish I never ever had to care about mitochondria, DNA testing and all the other meetings we are going to have to have. I just want my miracle babies who never should have lived at all. (At the same time I am glad to had them while I did).

Lessons from Some Pretty Special Bugs

2010-01-07T14:57:00.002-05:00

I think the hardest thing for me to deal with right now is to see how much the bugs love babies. Not only that, but to see how good they are with them. When they are around them they come alive. All of our friends babies help to fill a void that they are feeling. Each time one of them squeezes one of our bugs fingers there is a little recognition and I can tell it feels right.

I wish that they could experience "big sistering" again. I wish they didn't have to experience this level of pain and sadness.

Alexa saw pictures of one of our friends' new babies on Facebook. She had wires on her. She asked me "Why does she have medical stuff on her." I told her that she had trouble breathing when she was born and the doctors at the hospital had to help her. Now she is doing OK. She then said, "So God helped Andrew's baby sister...but not mine".

I tried to explain to her that God was helping Ava too. It's just that she was born broken and Andrew's baby just needed extra help. I tried to explain to her that when she was born both she and Emily had "medical stuff" on them too. (They needed to stay in the NICU for 10 days as they were born at 34 weeks gestation.) I told her that the "medical stuff" helps people and that God helped her. She liked that, as did Emily. But it was short lived. They really just want Ava with us. But didn't we all?

There is such a difference. There are so many stories out there about miraculous healing in unlikely conditions. People surviving an accident. Doctors getting there in the nick of time with just the right treatment. A fluke piece of plastic stopping an injury from being fatal. There are so many stories. These are of people who were not born with an underlying condition with a terminal diagnosis. There are even stories about miracles for those with a terminal diagnosis, but the miracle is in the secondary issue, not the terminal disease.

God does preserve life. He restores it. When Jesus walked this earth He restored people afflicted with inborn errors, as the geneticists would like to say this day in age. He rose people from the dead. HE rose from the dead. But this is what I have been contemplating: If God restored Ava to stay on this earth how would that further His Kingdom? What would have been better for Ava, to live here with us or complete restoration?

When Eric died I would think, knowing it wasn't realistic, but wishing so, that God could give him back to me. That he would raise him from the dead, too. It came out of desperation and a longing to be a busy Mommy, not a grieving Mommy. I had similar thoughts about the miscarriages I had that flanked my pregnancy with Eric. Maybe, just maybe, there was a twin and I will still have a baby. But here's the deal. If you are born, you will die. I don't want any of my deceased children to "come back to me". I don't want to have to mourn them again.

The girls have been making me think about Heaven. They are so concrete and have concrete visions of it. I am trying to be very mindful of not misrepresenting what Heaven is and what The Bible tells us about it. Allan and I have always been very intentional about answering our girls realistically and not sugar-coating what we say. And yesterday I realized that they taught me something that I never realized.

I know that I will be reunited with God and my loved ones once I die. I know that Heaven is a real place, not something esoteric with harps and angels flitting from here to there. It's tangible. It's grounded. It's perfect. But I've always thought about the people there in not a concrete way. I know that we will have new bodies, and we can recognize our loved ones. But I kinda imagined some kind of nomadic existence searching for loved ones. But Jesus has a room for us. There's the ability to talk. There are angels as well. There is really no reason that I can't think that Eric and Ava are together talking, frolicking. Why can't it be? They are in a room prepared for them. Maybe it says "Benton" on the door.

I know for certain that Heaven is my destination. But I am still on this earth and I need to keep on keeping on. It's harder some days than others. Allan and I were chosen to carry this burden, and each one of you who read this have your very own burden too. Probably one that we could never imagine having to handle.

Part of the keeping on for us is to try and get our Joy-Hope Foundation off the ground, develop and Esty site for "Ava" prayer bracelets, go to Disney and make some happy memories in the midst of the sadness, and work on a couple of books floating in my mind. These are all things that we are called to do. We don't know why. But we will follow the path that is laid before us.

Living is hard. We make mistakes. We loose our cool. We are human and mess up all the time. We question, we doubt, we praise, we get it right sometimes. The bottom line is that God is always there to guide us and help us walk the walk we are asked to. We just have to ask Him to help and let Him in.

Back to School

2010-01-04T11:02:00.003-05:00

The girls went back to school today. I realized that I have not taken them to school and picked them up since the begining of November. Slowly we are "re-entering" our usual life. I had to catch myself a few times thinking about how fast I needed to get home so I could feed the baby. That's stinky. As we get into our "normal" routine, more things will magnify the hole in our family. I forgot about that part.

I also registered the biggest bugs for Kindergarten. Time marches on and we have to work on letting go. Sometimes soon than we are ready for. But it always has to happen.

When I came home I was greeted by Elaina who was tucking in Handy Manny Tools under the foyer carpet. Then they had to go to time-out for hitting her. Those are the moments I wish I could bottle up and keep forever.

Excitement in building in the Benton house for a Disney excursion. Most everyone can't wait to meet some various Princesses. Then most exciting thing is that the bugs can chew gum on the airplane (something which they have ever done). So cute. Gum. The solver of all problems in life.

One day at a time. My Grandmother's motto while she battled cancer. One Day at a Time sweet Jesus is what we sang at her Memorial Service. So simple. So helpful.

Questions

2010-01-01T23:55:00.002-05:00

Today the eldest bugs and I went on a quick errand. On the way home they were full of questions about heaven, and why Ava had to die. It makes me so very sad that this is the life that they have. But I am so very proud of how they are handling it.

Alexa is visibly having the most difficult time. Emily is twinkle eyed when she thinks about Heaven and Ava being with God and Eric. She is still sad, but thinking about those things really seems to help her. Alexa's arms ache to hold her baby. It is so heartbreaking. I know exactly how she feels. Every fiber of my being makes me want to take that pain away from her. But I can't even take it away for myself. This is something she has to work out in her own time, at 5. My 5Th year was way less complicated, I'll tell you that.

Alexa wanted to know why Ava died. I told her that her body didn't work anymore so she couldn't stay on earth with us. No, she wanted to know WHY. I told her that her body didn't make energy anymore and God decided that Ava should be with Him so that she would not be in pain or suffer in a body that did not work.

I reminded them that there is no sadness in Heaven. There is no sickness and there is lots of energy. Ava is free now. She is with Jesus. Then they wanted to know if you could talk in Heaven. I told them that based on a scripture in Revelation, yes I think that you can talk in Heaven. Can we go places? I didn't know. Are there toys? If God thinks that you need toys then He will have them for you.

They concurred that Ava is praying for us while she is in Heaven so that we won't be so sad. I told them that I thought that she would want us to be happy too. They told me that she wanted to be with us.

She most certainly did. I have never seen such a fighting spirit. I told them that Ava tried her very best so that she could stay with us. I sincerely think that she did. Emily said that Eric tried hard too. I told her that although Eric did try, Ava truly tried harder. I mentioned that it's because Eric hadn't met them yet. Ava did and she really wanted to be with her sisters. That is why she tried so hard.

Elaina told me during her bedtime stalling (oops I mean "story") ritual that she wants Ava to be in the hospital so she can be doctored. I told her that she is in Heaven and she doesn't need to be doctored any more. She was good with that for tonight.

I think one of the hardest things to deal with right now is to watch their sadness and how they are forced to process such tough information at such a young age. It's not lost on me how this is molding their little minds. Their courses are being chartered. No pressure there for the absent minded grieving and impatient parents.

New Year

2009-12-31T13:49:00.004-05:00

When life is so chaotic, I like to organize. Today my closet is the way I love it, weeded out and size and color coded. Refolded too. Allan is on his way to drop off the last minute donations to Good Will. Somehow this process helps, but makes the day hard too.

I find that I am suddenly remembering things about grieving that I've forgotten about. I wish I didn't have to remember it at all. I wish I didn't know what this type of grief is all about. I hate finding surprises that were tucked away. Clothes that still smell just right, a pacifier, a favorite outfit. It always happens. I feel like it's good to get it out of the way. The problem is that it's never really out of the way. There will always be little reminders that catch you off guard. A smell, a band aid, the way the day smells.

As sad and hard as it is, maybe it's a gift from God. A way for Him to remind us that our loved ones are still with us even if they are no longer tangible. You see the only guarantee that we are given in life is that we will all die. All the rest of life in between is up to us. We can choose to live on our own accord or we can choose to live according to God's will for our lives. It's hard to relinquish control and hand over the reins. You never know what you are going to wind up doing.

Honestly though, when you try to take over those reins, do you really wind up knowing what you are going to do? The main difference is, if you walk without God, there is no hope. Hope comes from the promise of eternal life. God sacrificed HIS own child for US. He did it so that we could have ever-lasting life. God knows how much it hurts to loose a child. He did not have to do that at all. But He did so that we could know what length He would go to for us.

See, even though we loose our loved ones and we are sad, there is SO much more to live for. If we confess that we are sinful (we do wrong things, as the bugs say) and believe that Jesus died for that sin of ours and we are truly reticent we, too, may have life ever lasting. A chance to spend eternity with God. There is no pain, sorrow or illness.

I'll tell you, walking through grief is so very difficult. Doing it without the One who loves you the most is next to impossible. I honestly don't care what the sin is. God forgives it, if you ask Him to. He just does. It seems simple, but you have to be willing to relinquish the control you think you have over your life. That's hard for us. It's hard to be humble and to submit. I will tell you first hand, it makes my life so much easier. When the weight of my sorrow crashes down around me and the buggie-boos and fighting and demanding my attention, He is there to pick me up and carry me through that wave. I'm riding with the tide, not getting caught in the undertow.

Believe me, there are times that it seems like I will get caught in that undertow. It seems so dark and there is no way out of the sharp pain and the dull long term ache that follows. But He is there to pull me out and show me what is important. He gives me the scent that reminds me of my loved one. I find a letter, a hat, a golf ball from my Grandpa. I find a pacifier. I look in Eric's memory box. I see a frog. I see someone who looks "familiar". I hear my Grandmother's voice in my head. I get sand on my towel. These are all cherished things from the people who have impacted my life and I love. People I know that I will see in Heaven. People who have already completed their journey through this world, impacted me, and many others, for Christ and are in the presence of the living God. This is why I have Hope. This is how I can face tomorrow. Whether it's a new year or not, your life can only be new if you give it over to God.

Processing

2009-12-30T09:03:00.003-05:00

I've been thinking about all the babies in my life. We are in the season of life where we are all building our families. Eric was born in the "first round" of babies amongst our group of friends. After he died, I tried to be as involved as I could, but it hurt so much to have empty arms and watch everyone else with their babies. The problem is that I love those kids. They are a part of our extended family. I forced myself to be as involved as I could. But it was really hard. I missed out a lot.

Ava also has many friends born about the same time as she. These kids I also love. This time my house is full, but very empty at the same time. A big difference is that I am still a Mommy with a mission. After Eric I was a Mommy without one. I like having a mission still. It is just as hard to see those other babies, but in a different way. I want to be a part of their lives. Ava was made for the life she lived. These children are still unfolding into the wonders of God's promises and plans for them. I do want to hold them and love them. So I am trying to do that now so they don't become taboo. I'll tell you, it's not so bad.

One thing I pray for is protection over the children of our friends and family. I pray that no others have to walk this road that we are on. I know that is so not possible. Other children will die. But I ask God to keep families in tact. I don't see that there is a problem with that. I also know that we can support those who may have to walk that road someday. We are happy to do that too. It's not a fun club to be in, but it's our life.

I so wish that our babies had a problem that modern medicine could touch and help with. I wish there was at least some hope medicine could provide that the form of mitochondrial disease our children suffered from could be helped. That is not the case. I don't know if it ever would be the case, there is much more research that has to take place first.

I go to bed and not know what the next day will bring. Sometimes it's more tough than others, sometimes it's a hair easier. The sadness and loss we feel ripples through our family at different times. It's unpredictable and sometimes feels like the wind was knocked out of you. I am noticing that God is making sure one out of the 5 of us is a little more up to help those that are a little more down.

The ache will dull. The pain will not be as poignant. There will always be a hole though and that's OK. I wish I could fast forward this road. It took 5 years before I started to feel lots like me again after Eric. It's not fun knowing what you are in for. Then again, I don't really. Ava's life and death is and was way different than that of her brother. The aftermath of our grief will follow suit, I suppose. It already is. It doesn't make it hurt less, just different.

Family time

2009-12-28T23:46:00.002-05:00

Today was a much needed good day after the tough one we had yesterday. The bugs flitted around the house in leotards and tutu's having "ballerina" lessons at 20 o'clock. Oh wait, they changed it to 5:30. There were couch cushions all over the place. Blanket piles and some strange chant that Allan and I couldn't figure out what was being said.

It was nice.

We had movie night and game night. It's amazing how one pizza served in the family room on a kid table with paper plates in front of the same mind numbing children's show (Strawberry Shortcake) can turn into a major event when you are 5, 5, and 2. If we ate it in the kitchen, where's the fun in that?

We spent the majority of the day trying to figure out the best way to approach Disney. They try to tell you that it's affordable. I'd like to know by whom. I heard there were lots of deals out there. Just not really now. We did find some good stuff, eventually. So I think we are going to try and go. There are still kinks to work out. (I am holding out for a better reduction in cost.)

While we were in the throes of research Elaina bounces up to us and wants us to come "look I did". "Hold on Honey, just a minute." "Daddy, LOOK I did." "Hold on honey Mommy and I are doing something." "DADDY, LOOK I DID." "Hold on Honey, Mommy and I are doing something, that involves you being able to meet Mickey Mouse." "Oh." Off she went.

It was hysterical.

It feels good to laugh, even when it's outside of yourself.

Onions and J-O-Y

2009-12-27T12:59:00.004-05:00

Trying to get back in the swing of things is hard. I think about how much more difficult it will become as we absorb the responsibilities of our "usual" life. I am exhausted and have a low threshold for things that bother me. Poor Allan, it's like he is dealing with pregnant me. He was hoping to not have to do that I suppose. I want the broken or the breaking things in our house fixed NOW. If it's annoying me, I want it taken care of. I find I just don't have the extra energy to expend on that "fluff". (Drafty windows and a new roof isn't "fluff"', but kids stuff everywhere, a broken phone, a not functional storm door, and clothes that don't fit right could be considered as such).

The little reserve I have is to go into the ladybugs flitting around the house. They will usually stop for a hug and an 'I miss Ava'. Their regular conversation these days consists of: 'Look at the picture I'm coloring. I'm coloring in the lines. We used to have 5 kids and now we are back to 3. These are yummy mashed potatoes.' Sometimes I can deal with it OK. Today it's like little daggers in my heart.

I always wanted to have four kids. I've given birth to 5 wonderful little bugs, but I so wish that I had the opportunity to raise them all. When we found out we were expecting Ava to say we were surprised would be an understatement. We were thrown for a loop thinking that our family was complete. I went through a lot of processing to come to terms with having another one right now. When I was younger I wanted 4, when I came to terms with the surprise, I still wanted 4. I really think that we would have done a great job that the craziness of 4 would provide. I hate that I will never know now.

It's those thoughts and feelings that are piercing and raw. Every time I peel a layer of that onion my eyes sting and burn as I get closer to the heart of the matter. I can't look at the whole thing all at once. I think I'd blow a gasket. I keep saying that I can't do it anymore and how much more can I take. Yet here I sit, still doing what I feared the most and still taking it. Sometimes way better than others, none the less, taking it.

Allan and I were noticing that this time around we feel way more present in life than we did when Eric died. That is a blessing. We have to be. We have three active, wounded, and still happy ladies that we have to care for and nurture.

My soul is nurtured by God. I need someone to nurture my physical being. My body is sore, my mind is dull and my heart is so very broken. It is amazing to me how a simple (tongue in cheek) task, like taking 3 kids to church, and eating lunch can take all I have out of me.

I find that I am trying to rush each day to get to the next. The next holds the same loneliness and sorrow, but as the song says, "His joy comes in the morning". I keep looking for the glimmers of that joy so I can hold on and get to the next step. Sometimes it's so very intentional. We have a huge JOY sign in red on our front lawn. In the center of the "O" is Mary, Joseph and Jesus in white. Whenever I leave or come home it's there, in my face. J-O-Y and why we can have it. Sometimes it has to be blatant to be effective.

Tucking in

2009-12-25T21:05:00.003-05:00

Tonight Elaina ca me bounding in to Emily and Alexa's room at bedtime. "Mommy, you tuck Emmy and Lexa in and you come and give me a kiss and I tell you a story, OK?." This is what she does every night. It's how I can see how she's processing what is going on in our home. It's her way of stalling before bedtime. Everybody wins.

During one of these "story times" Elaina was able to ask questions about Ava's burial service and why she was "in a box". I could hardly believe how much of the day her little 2 year old brain understood what happened that day.

Tonight our conversation/story was this:

E- "Mommy, why's Ava in Heaven?"
E- "She got a new body".
M- "What's she doing with it?"
E- "She holding God's Hand."
E- "Why Eric in Heaven?"
M- "Why is Eric in Heaven?"
E- "He Died."
E- "He got a new body."
M- "What's he doing?"
E- "He holding God."

To think about Ava holding God's hand brings me comfort. To think about God holding us brings me Joy.

Ho Ho Ho

2009-12-25T10:53:00.003-05:00

Merry Christmas! It is a great day to reflect not on all we've lost, but what we've gained and have. The joy that I usually feel on Christmas is dulled, but I know it's there. It's reflected in the twinkle in the eyes of my three beautiful girls. They are full of hope and peace.

We gave them each a photo book of each bug with Ava. I took special pictures of them with her from the time she was born so they would always have them, in case she died. I am so very grateful that I made a point to do that instead of bury my head in denial of the very distinct possibility. This morning each of our bugs appreciated this book as much as all the other "kid" stuff they received. (Thank you to a whole bunch of elves disguised as Social Workers, Case Managers, Performance Improvement and some nurses from my work.)

As I type Allan is playing with one of his toys from those same elves: a remote control truck. It was so fun to hear him exclaim, "yeah!".

Our plans for the new year are lofty, but hopefully attainable. There will be a 5K for Ava in the spring. We are going to move full steam ahead on getting the Joy-Hope Foundation off the ground. I will continue to make prayer bracelets (with the help of Emmy and Lexa). They can't wait to help. We really need to potty train the headstrong two year old who is more than ready. We also need to regroup as a family and individuals and try to make sense of what just happened to us. We need to grieve and do so courageously. Allan and I may take a weekend away. We are also hoping to go to Disney so we can see the sparkle in those six gorgeous brown eyes. Who knows, maybe I will have a little glimmer in there too.

During the season of grief there are always abundant lessons and truths. They form in the darkness and shoot forth a ray of light for that moment. If you keep an eye out if can become a lifeline, so to speak. God throws us the proverbial rope so that we don't slip into a deep depression. A pit that is seemingly impossible to climb out of. Each situation that causes grief has it's own lessons to assist in the season of life that you are in.

My lesson that I have identified in these early minutes, before the reality of the loss sets in, is that I need to live by faith, but intentionally at the same time. It's crazy. I never thought those two things could go hand in hand, but they do. God has been providing for our every need, tenfold, during Ava's brief and bold life. Now, He is doing so even more in the aftermath of her death. I know He will take care of all the details. But I have to make a list of the things that I need to do so that I can get them done. He is directing the course we are on and we want to obey. The story of Eric and Ava is not over, God is telling us that. Their lives are complete on this earth, but there is more work to be done.

This is a tricky thing for me. I don't ever want to be holding onto them because I can't let them go. If I did that I would get stuck in my grief. Time marches on and so must we. But there are things that we are feeling called to do, to assist those families who will have to walk a similar path that we are.

The list for the moment is as follows: Watch Allan play with his remote control monster truck and launch it over the ramp and pillow he set up. Cook the "roast beast" (standing rib roast). Delight in my children and my husband. Miss my babies. Play with my Mom and Dad. Find a reason to use my new griddle. Rest in Jesus.