Peaks and Valleys

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?

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.

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.

Basketballs

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)

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

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

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.

Anger

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.

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.

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.

Duldrums

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.

Illness

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.

Birthday's

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.

August

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.

Prayer

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.

Bedtime Bible Story

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.

Free Fallin'?

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.

Traffic Jam

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

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.)

It's not always about Ava

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.