This will be another short post. I'm very tired.
I'm feeling sad tonight, overwhelmed by the reality of EB and scared about Jonah's diagnosis. Even if I act strong, I feel weak and inadequate. Jonah ripped both his arm bandages off at different times today, and I had to redress them (with a nurse's help) when he was on no pain medication. Stressful. Painful. Frustrating. Jonah was screaming, inconsolable. It was so hard. I just keep imagining that happening when Matt is at work, and Jonah and I are alone. How do I keep him from hurting himself and prepare all the gauze and bandages and redress his arm by myself? Overwhelmed.
He had to get extra morphine during his bandage change tonight, but settled down after we got done messing with his first arm. The hard part is the OT, not the dressing change... although he hates both. I did the dressings by myself while a nurse held him still.
Someone sent us an obituary today of a man who lived to the age of 59 with the most severe type of EB. Although it was encouraging to see he had lived so long, the obituary article went into detail about his fingers being fused together into mere "stumps", eating a liquid only diet, having to get one of his arms amputated, being shunned by his community, people thinking he had AIDS or Leprosy, and finally, him dying, disillusioned with Church and angry at God "who never gave him a break."
I wonder what the future holds for Jonah and how he will handle it all. I'm so sad for him and feel completely helpless that I can't take it all away. I know Jonah is changing lives and giving people hope, but man, sometimes I get really tired of being an "inspiration," and I just want him to be healthy and pain free and "normal". I want him to be able to wrap his hand around my finger without it hurting and without leaving behind a blood stain. I want him to be able to wear baby clothes and regular diapers.
I wonder if God has brought him into this world just to take him out again. I wonder if my heart could take it. I wonder if my faith really is strong enough to survive it if Jonah leaves. I miss Gabe. I'm broken tonight, praying for renewed hope and new mercies for the morning.
Jonah continues to be strong, and my God continues to be mighty. But I feel like I don't believe enough and don't have faith that's strong enough. I know that in my weakness, He is strong. But He doesn't promise us healing for Jonah or even his survival. He promises to work for the good of those who seek him and to make their paths straight. But what exactly does that mean?
I just wish, as I lie here in bed, that I had an 11 month old sleeping upstairs in our beautiful nursery and a 2 1/2 week old sleeping beside me in his bassinet.
I want Jonah to be healed. I want his pain to go away. I want God to snap his fingers and give me the healthy version of Jonah that I prayed for on my knees for eight months. Is that too much to ask?
I'm not angry. I'm just so sad and confused and broken. Please pray for us.