Saturday, November 21, 2009

Waiting and more waiting

I am feeling very frustrated and a little angry today. It seems like all we do is wait. Wait for results. Wait for tests. Wait for Ava to get better. Wait for Ava to die. It's horrible to read. It's horrible to wait.


The implications of her probable mitochondrial disease are mind blowing. I find that I do some research and all I read are hypothesis and genetic mumbo-jumbo. There are think tank doctors and Neurologists. The result is a whole bunch of vitamins that don't really do a lot of good for a deficiency in Complex IV of the electron transport chain. Other complexes the vitamin cocktail works. Eric's deficiency was in Complex IV. It seems that people don't live too long with a deficiency there. This is exactly why we are so desperate for Ava to not have what Eric had. With that deficiency the road is different but the destination the same.


I wonder how long it will be before we don't have Ava anymore. I wonder what toll it will take on each of us and our family. I shudder at the prospect of feeling that level of pain and anguish again. I tire in fighting for Ava. I think to myself, "what am I fighting for?" but the answer is "For Ava".


I will never understand this road we are on and why we get to carry this heavy burden. I hold tight to the fact that God created Ava and therefore she is good. God can only create good. A broken person does not mean bad. In our humanness, we are all broken on some level. Whether it's mainly physical or mental brokenness we are broken. Only He is perfect. He loves all of us despite our brokenness.


Therefore, God created Ava. She is good and she is broken. But God loves Ava. She is on loan to us from Him. It is our job to love her too. He has a plan for her little life, no matter how long it should be. We know that. But we hurt so very much. And we just plain want a miracle that she is a keeper and does not have what Eric had.

We are drained today. There is an ebb and flow in a long hospitalization. I hope we are on an upswing tomorrow. Ava was admitted because she didn't have any reserve. We now don't have any left. We need to fill our tank to keep on going. Tonight my heart aches and is screaming for this nightmare to end. For it all not to be true. Then Ava tried to open her eyes a peak.

I look at her lying so helpless in that bed. I wish I could fight her fight for her. I can't. It's not mine to fight. I would do anything if I could be the one who had the tube in my throat and 2 in my nose. I would gladly boast 2 IV sights and a million blood draws and accuchecks. Instead I keep vigil at her bedside, longing to trade places.

I fantasize that there is a miracle cure in feeding her. That maybe they would uncover another reason that she is so compromised. I know we don't have a definitive diagnosis yet. Whatever it is, it will be a long way off. Today I just can't see past the tubes, the bed, and the edema.

Ava is on hold for vent weaning. She's developed some more atalectasis in her right upper lobe. She is very swollen tonight as well. Her protein level is low. Her Neurologist thinks that we need to see how she does with her nutrition as that should help. The Intensivitst agrees. (Tonight is our first night with him and so far we are impressed with him). They are going to give her some lasics, collect a urine sample and some more blood work. Ava may also need another transfusion as well. All this medical tweaking and balancing act is enough to drive anyone crazy. We are constantly waiting for the other shoe to drop. Each time something crops up we brace ourselves for what we feel is inevitable.

It happened to Eric, so we wait for it to happen to Ava. We know that Ava is not Eric. We know that God is in control. We know that His plan is just and good. We hope that Ava's story will be long and we will have her in our home with her sisters.

We came home and got to kiss the bigger ladybugs tonight. They were full of hugs, smiles, stories of their day. I look into their beautiful faces and am overwhelmed with how much I love them. How much I hurt for what they are going through. I look at our kids at home and our one in the hospital and wonder when and if we will all be together as a family. It seems so far away and so impossible. This morning I made pancakes, sausage, and eggs. We sat at the table and I thought I heard Ava. That was the first time through all this that happened. It gave me pause in my moments of feeling like a "normal" Mommy. I still am greatful for the breakfast and the snuggles. Even the fight over my lap (which usually bugs me to no end).


We are so tired of the intervention, the blood draws, the waiting for results we don't want to know about. We are tired of being separated from our children. We tired of waiting. We are suspended in time as the world goes on around us.

We have no idea why we are asked to do this again. But we do it. We feel it. We are living it. We are surrounded by the love of the Lord and an extensive support system. We are so grateful for that. Each prayer lifts a piece of our burden, our heartache, are praises, our hope, our sorrow, our request for a miracle. We would never be able to manage if it weren't for all of the prayer support, financial support, emotional support. The letters of encouragement. The meals. The snacks. The hugs. The socks, Yankees shirts, the bears and little somethings for our daughters. God is working we know it, we see it, we feel it.

6 comments:

  1. Please feel it as our prayers in Massachusetts are lifting a piece of your burden. Ava is constantly on our minds and in our prayers as are all of you.
    Love and hugs,
    Aunt Dede, Uncle Jack,Julie
    Joe, MaryAnne, Amelia and Lilah, too!

    ReplyDelete
  2. Amy, this is precious little comfort in a barrage of hardship, but there's one thing I want to remind you of. Your three older daughters are deprived of you right now, and they are worried about their sister. But they are seeing the covenant community in action in a way that they would not otherwise see it. They are feeling the love of their believing grandparents, and they are seeing the outpouring that comes from your friends and your church. It is good for kids to understand personally how the body of Christ works and what that looks like in action. It will mature their faith in a special way. The fact that you have to be away from them for a time is not completely bad for them. I want to help lessen your guilt feelings a little. I think God is blessing them -- just in a different way than He would bless them if you were able to be with them more. -- Becky Sodergren

    ReplyDelete
  3. Amy and Allan, our hearts are breaking for you. We love you and little Ava so much. You are constantly in our thoughts and prayers.

    ReplyDelete
  4. The raw emotion in your writing is so painful and beautiful. My family prays for Ava and all of your family every day. Your faith is so strong and I continually admire you for it.

    -Erica

    ReplyDelete
  5. I don't know if you remember me, so many years ago at New Hackensack. But your brother's FB linked me to your blog and I've been keeping up on the progress. Both my small group and prayer group at seminary are praying for you, Ava and your whole family.
    Tonight's entry made me think of this song, which has brought me some comfort in my own trials. I hope it may bring you some peace as well. It's by a Christian artist named Ginny Owens.


    The pathway is broken
    The signs are unclear
    And I don’t know the reason
    Why You’ve brought me here
    But just because You love me
    The way that You do
    I’m gonna walk through the valley
    If You want me to

    Cause I’m not who I was
    When I took my first step
    And I’m clinging to the promise
    You’re not through with me yet
    So if all of these trials
    Bring me closer to You
    Then I will go through the fire
    If You want me to

    It may not be the way
    I would have chosen
    When You lead me through a world
    That’s not my home
    But You never said
    It would be easy
    You only said
    I’d never go alone

    So when the whole world’s turned against me
    And I’m all by myself
    And I can’t hear You answer
    My cries for help
    I will remember the suffering
    Your love put You through
    And I will go through the valley
    If You want me to


    If You Want Me To ~ Ginny Owens

    ReplyDelete
  6. The way you express your heart is breathtaking, it's like seeing invisible faith with my own eyes. You are correct in your assessment that Ava is good! She is a beautiful creation and what we think of as "deficits" are truly just uniquenesses given to her by the Creator. Be strong and courageous in hoping for her and dreaming for your family - God is able! He might have a different plan but that doesn't change the fact that He is able to heal her and bring her home to live with her big sisters!

    Praying daily for your family, for your Ava, for your girls... praying that you will find new mercies every morning and that the Lord will renew your strength as you grow weary. I'm with you, it's frustrating to not know the length or outcome of this journey but God has not forgotten His Ava, nor has He forgotten you and Allan.

    Praying for you today!

    ReplyDelete