Thursday, December 1, 2011

Fa la la la la?

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.

Thursday, November 17, 2011

Happy 7th Emily and Alexa!

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.

Tuesday, November 15, 2011

Mud, mud, mud

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.

Sunday, October 2, 2011

Carpe Diem

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.

Saturday, August 13, 2011


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.

Saturday, August 6, 2011

Rosebuds (not the sled)

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.

Tuesday, July 26, 2011

Arms Length

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.

Wednesday, June 8, 2011

Coming Home

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.

Wednesday, May 25, 2011

Spreading some wings

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.

Tuesday, April 19, 2011


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.

Wednesday, April 13, 2011


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.

Thursday, March 3, 2011


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.

Wednesday, March 2, 2011

The "What If" game is annoying

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.

Saturday, February 19, 2011


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.

Wednesday, February 9, 2011

Ready for a Change

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.

Tuesday, February 1, 2011


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.

Wednesday, January 26, 2011

Long Time No Hear

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.