Saturday, July 13, 2013

Lots of thoughts.

I'm at a loss as to what to title this entry. There are a lot of thoughts swirling in my head at the moment. It's nothing new or that hasn't been there for the last few weeks, but they are more difficult to put into words these days.

We visited with Dr. R yesterday morning. In our talks of dying, Heaven and reassuring, Wyatt shared that he didn't feel scared of what would happen to him after he dies. But he was afraid of what dying would feel like. We suspected this is where his fear had been stemming from for some time. As his pain would increase his anxiety ran wild and we often struggled to keep both his mind and body at ease. Our conversations were difficult yesterday morning, but we all needed to hear it from him.

I love this boy more than I could ever express. But love alone can't fix him. It won't save him. My son's body is dying. I can just keep going and going and going and try not to focus on the fact. But it's still there. It's undeniable. I see it and can feel it. And my heart is changing. When we came home from the hospital last year I understood what the doctors were saying, but it was hard for me to believe. There was something that didn't quite fit or feel right to me. A year later, I'm now beginning to feel differently. It's difficult for me to say it, but I look forward to the day when Wyatt has no more pain and is free of this body that has robbed him of all the things he wanted to do. We have fought for as long as we could. I remember clearly holding my 2lb baby nearly 11 years ago and whispering to him- I will fight for you as long as you want to fight. I never expected what would lie ahead of us. Eleven years later, my son's fight is still there, but I can feel it changing too. The day he wakes up in heaven may or may not be today, tomorrow, next week, a month from now- we have no way of knowing. But he's showing us that it's coming. His body is growing weaker, his belly more distended and painful and his body is so, so swollen. I struggle to see the resemblance of my boy that was once so full of life.

 It may be hard to understand, but I miss my son terribly already.

Wyatt's apologetic these days, saying "sorry" for things he doesn't ever need to say sorry for. But he says "I can't help it. I just feel sorry." I too feel sorry. I'm so sorry I can't fix his body and make it better for him. We explained to him yesterday that this part is up to him. He has fought so hard for so long, it's ok if he doesn't want to fight any longer. And it's also ok if he does. But something that weighs heavily on my heart is the worry that he keeps fighting for me, for us.

He told me yesterday that he doesn't mind talking about "this stuff" and heaven. I was initially concerned that he would be more anxious, but he's not. He said he can't wait to run as fast as he can again. "And my legs won't hurt" he added. I assured him that he was right, his legs won't hurt.

The superhero clubhouse is coming along and we're preparing for a super party celebrating 11 amazing years. He's looking forward to the clubhouse. He hasn't been out to see it yet, but we have taken pictures to show him the progress.

Thank you for your continued prayers, love and support.
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  1. I came across your blog when looking for information on mito because one of my students had been recently diagnosed. I have been reading it since then and praying for you, Wyatt and your family. I have been so inspired about how you continue to live life to the fullest possible. Thank you for sharing Wyatt's life journey. I can't begin to imagine how difficult it must be. You have given me a very insightful look into my own life and my journey through it. My thoughts and prayers remain with you. I look forward to seeing Wyatt in his clubhouse.

  2. So articulate of an entry giving light on such an inexpressible time. We are praying for peace and comfort as you journey together.

  3. We've never met, but several months ago Facebook suggested I "friend" you - we have my cousin, Leana, in common. I've been following your story since, and am in awe of your courage. True courage, in my book, is not so much about the fights we choose; no doubt any loving parent would fight with (and for) their child; courage instead displays itself best in attitude. The way that you comfort and prepare your son for the inevitable, despite the monumental heartbreak you feel, is courage at its finest hour. I wish I shared the conviction of your faith, but for what it's worth, even those of us less devout send our versions of prayer your way. I have no doubt that Wyatt will one day wake to angels, whatever we imagine them to be. One thing is for certain: your boy will live on in the hearts of those he touched, and your daughters will one day share his memory with their children. For those of you who loved him, he changed the world. And that is as beautiful a legacy as any of us can ask for.

    I wish Wyatt and your family peace tonight, and all nights to come. Tell him to dream of flying - only the coolest of superheros get to surf between the stars.


  4. It may be hard to understand, but I miss my son terribly already.


    This makes perfect sense to me.


    Oh, Wyatt. You will get there before us, you will know what Perfect truly is, and you are right. Your legs will run. There won't be any pain.

    God, have mercy. Have mercy on Wyatt, on Wyatt's family, on all who love him. He is such a special boy.

    Carry us, Lord, all the way Home.

    My heart hurts for every one of you. I wish the suffering you bear could be split apart and carried by all of us, instead of weighing so heavily upon Wyatt and upon those who daily hold his hands.

    Praying, praying, remembering all of you,

    Cathy in Missouri

  5. Words really cannot describe how great of a job you are doing to provide comfort to Wyatt throughout all of this and about the after life. It is hard enough for us to think about death, let alone reassure our children that they will be okay. As the above poster mentioned "surfing through the stars" is exactly what he will be doing, pain free and enjoying his life. There will be a special place in the clubhouse where his sisters, friends and family can reflect and tell of Wyatt's journey and super-fighting strength. Wyatt will be at peace and so will you. Many many thoughts of comfort is being sent your way. Love you Wyatt!