Tuesday, August 6, 2013

This is not normal, people.

Weeks ago we prepared for the worst. Again. This is not normal, people. To prepare for your child to die over and over and over again.

Wyatt lays across the room from me now, sleeping in his bed. I've typed sentences similar to that so many times on this blog within the last couple years. At this very moment he is wearing his mask and assisted by the vent. His oxygen saturations have been pretty stable with and without the vent this last week. His heart rate not quite as calm and steady, but nothing we haven't seen before. We have not adjusted his oxygen at all. Any change has the potential to cause his body to rebel and I'd rather not disrupt what balance he has found, at the moment.

We're caught in a cycle these last weeks. Wyatt will request to wear the cannula and refuse the vent for 3 to 4 days, until his body tires enough that it becomes too hard to breath. At that time he's unable to settle or sleep comfortably because he's working so hard to continue breathing. His breaths become louder and he begins to breath faster. He becomes irritable, grouchy, unable to speak loud enough for us to hear and unable to articulate his words to be understandable. He will try to move about the bed in an effort to get comfortable to only be more uncomfortable. He then will finally ask for the vent...we put the mask on his face, turn the machine on and it instantly starts taking breaths for him. He will fall asleep comfortably within a few minutes of relying on the vent and sleep for several hours. When he wakes he will ask for the nasal cannula and that's where the cycle begins again.

As he breathes on his own with the nasal cannula his pain increases due to the extra demand placed on his body, weak muscles that are now working overtime and disrupting the balance of everything.

Our emotions are caught in this cycle too. While we have been a little surprised that things didn't happen yet like we thought they might...I guess I shouldn't really be. It is how we've been living, from one extreme to the other. I also won't say he's proving us wrong entirely, his body is not well and he's hanging on by threads.

But he's still hanging on by threads! 

He never ceases to amaze me...from the very moment I realized he was coming into this world. This has been our 11 years, my friends. One surprise, one hurdle, one hill, one mountain after another. And he conquers them each with a strength that surpasses our understanding. This kid rocks at life.

The uncertainty gets to me from time to time...there is no rule book or predictable way in which things will happen. I don't know what I want for him as my head and my heart are conflicted. I don't want him to suffer. And I'm afraid he is or will. I want him to know and decide when the time is right. In his almost 11 year old mind, after his birthday party, he fully expected to wear the cannula to sleep and wake up in heaven. It's what he wanted that evening. When we all have talked with him about dying phrases like "it's ok if you want to go," "it's ok to let go," or "it's ok if you want to stop fighting" are often used. He's heard these things a lot. After he woke up, still here, in our living room and still alive, he was confused. "How do I let go? How do I stop fighting?", he asked. I don't know the answer to those questions exactly. I assure him that God knows the plan and when just the right time will be. But until then we continue doing what we do. We can have fun, we can smile, we can laugh, we can be grumpy, we can cry if we need to. But He will let us know when it's the right time. Wyatt's plan, my plan and God's plan rarely seem to line up. Or so it feels.

Trusting like this is really hard.

As his central line burst and I talked out a plan to take him to the emergency department with Dr. R, Wyatt was upset that he had to go to the hospital. He prayed that God would take him to heaven right then, as we loaded him into his wheelchair, as we fastened his wheelchair in the van and as we drove to the hospital. I promised him we would not stay. I promised him that Dr. R would not let the other doctors keep him there. Or let them do anything to him that would hurt him. I promised him I would call Dr. R myself if we needed him to intervene. I made a lot of promises that night! But we had no other choice...we need IV access to give him the medicines to keep him comfortable. On our way to the hospital Wyatt repeatedly told me to call Dr. R. He was tired, confused, a little scared and angry. I was to tell the doctor that he trusts the most that he'd rather go to Heaven than go to the hospital. I did email him and told him what Wyatt wanted. But we also know that Wyatt's biggest fear is more pain and if we are to keep him most comfortable we need that central line to be fully functioning.

I'm not sure what the right thing to do is a lot of the time anymore. We continue to do our best to keep him comfortable and carry out his wants that he's able to verbalize to us. We're doing the best we can and that's all we can do. Maybe that's enough, but it doesn't always feel like it. We're caught in a cycle.

Make no mistake, I'm incredibly grateful that my son is still laying across the room from me sleeping, yet again. I thank God every day, every afternoon and every evening. It's like the bonus features of a movie- you thought the movie was over, but there was still something to see. And sometimes you get lucky and they add even more than one set. Kinda like that...maybe, but not really at all. :)

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  1. Amazing post. Just keep going!!!!

  2. Thank you so much for sharing such difficult, but beautiful, life lessons for all of us through the eyes of Wyatt! You don't know what an inspiration Wyatt and his family are for so many of us. God's plan for each of us is often so very different than what we expect. You all remain in my thoughts and prayers.

  3. Wyatt never ceases to amaze me! Tag!