Sunday, August 25, 2013

I don't really know what to say.

I sit here knowing I need to write an update. I owe you all an update. But I'm finding it difficult to put this week into words for you.

Wyatt is continuing to fight against his body. Or maybe it is with his body. Either way, our boy continues his fight because he doesn't know how to stop. He doesn't know how because that is all he knows. It is how he has learned to live and keep living. But still he is declining and his body can't keep up with the demand.

No matter how many times we have seen him in the midst of a crisis and/or declining it doesn't really get easier. This part is not any bit easier, it just becomes different.

You know, after dealing with all we have dealt with at home the last couple years, the instincts I have as Wyatt's mother to just pick him up and go to the hospital have not lessened. The instincts I have to help my child, to find him help, are still very much there. I still feel those instincts each time his body is in a crisis or he reaches a new level of decline. I get scared. I panic sometimes. I need reassurance that what I am doing is correct. While I would feel 10x more comfortable in the safety of our hospital's walls, Wyatt wouldn't. He's seen too much, felt too much, lived through too much to feel safe there. What brings me a sense of comfort terrifies him. Perhaps my love is stronger than my instinct. But it's not easy. Not at all. As much as I would like it to be true, I don't always have it all together nor am I as calm as I may seem on the outside sometimes.

Wyatt's oxygen saturations are dropping lower and more often. His heart rate has now come up from the 30's as his body struggles and fights to breathe. He is not able to speak much. He is wearing the nasal cannula and has declined using the vent when asked. He complains of pain intermittently if he is awake, but it's hard to tell how much pain he is feeling. He is coughing and grunting a lot when awake as it is so difficult for him to take in enough air to inflate his lungs. He is much more comfortable when sleeping at this point. We have doubled his valium dose in order to keep him calm. But he's not sedated...he does wake at times and we've been able to interact a small amount with him. Though, it's difficult for him to talk and breathe, so it is limited.

Thank you for being here, or there, traveling this rocky path with us. I would refer to it as a road, but i can't help but feel we are so far off any identifiable feels more like we're in the back woods chopping down trees and beating back branches as we make our own path. But we know we're not alone. In times of panic and fear your words and prayers have calmed my heart. To hear how Wyatt has impacted you or read your words of encouragement for him, for all of leaves me speechless much of the time. The words "Thank you" don't feel like enough. But they are all I have. So, I thank you. Thank you for checking on us, reaching out to us, showing your love, supporting us in prayer and thinking of our family. Thank you for repeatedly praying even when it's difficult to know what exactly to pray for. Thank you for the kind messages and just letting us know you are here. Thank you.
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  1. Continuing to keep you all in our thoughts, and praying for peace. Thank you for continuing to share your journey with us all.

  2. I don't know you and I don't know Wyatt...I don't try to put myself in your shoes, or know what you are feeling...because there is no way I can do that. I thing I can tell you is that I admire you with all my heart...for sharing your family, for sharing your son...I click on your blog everyday to see how Wyatt is, and I smile when I see he is still strong brave boy!! keep fighting <3 :)

  3. Keeping you all in my thoughts and prayers. We are all travelers on this journey called life. Thank you for sharing such a personal view of yours. It is truly a guidebook for others on living life to the fullest. Wishing I could help cut down some of those trees or beat back some brush for you, but know that you are being thought about many times a day.

    1. Our prayers continue to be with you all.
      "To everything there is a season and a time to every purpose under heaven" Ecclesiastes 3:1

  4. You don't owe us anything but knowing that we are all here for your family and Wyatt. Peace and comfort forever and always.

  5. Oh Wyatt
    so many times I have
    thought about what you said
    "How do I let go?"

    Because when the body
    is a prison
    - you can't live
    and you can't die

    The hospital
    is a horror
    even though all they want
    is to help

    And living isn't living
    but dying means leaving
    the ones you
    love the most

    You can't help but long
    for Heaven
    Not only for yourself
    but for everyone who has

    Walked beside you all the long road
    and far into the overgrowth
    that has ripped and torn
    at hearts along with bodies

    Everything feels like falling
    words and
    prayers and
    whys and

    Won't hold and
    you turn your eyes again
    to the One you trust
    for hope beyond this

    All this

    Hope beyond the pain
    Hope beyond the grave
    Hope in spite of


    God, please. God, please.

    Carry us.

    Love and love and love to all of you,

    Cathy in Missouri