Our Christmas started out like most people’s. Well, sort of. We, like many, kept it small this year. On Christmas Eve, we did bath and bandage change in the afternoon. It never really feels like a holiday can begin until that is out of the way. That night, the boys opened their gifts from us, which always include their annual Christmas Eve pajamas. Jonah got new Nikes, a sports book, and the game Scattergories, and all was right with the world.
We got them in bed, and Santa, as he is faithful to do, came (with very little assembly required this year, thankfully). I don’t even want to talk about the years he brought the train table and wooden track (I realized at 2 a.m. that I am not spatial), the two-hooped basketball goal (we never could figure out how to get it not to wobble, and I’m pretty sure we put it together backward the first time), or the year he brought 40 Melissa and Doug cardboard building blocks (that I had to individually fold myself).
The boys woke up early Christmas morning after a failed attempt to sleep in the same room. We went downstairs and had a great first hour unwrapping Santa presents and playing Jonah’s new Madden 21 game. After that, it was time to be tube-fed, have boo-boos drained, and get dressed to go over to Granny and Grandaddy’s for lunch. It had been about as close to a perfect morning as we get.
Jonah and I went upstairs to our respective rooms to get ready. He went to the bathroom, and it was then that our day took a turn. One minute he was fine. The next he was screaming and crying in complete agony.
“What, Jonah?! What is it?” I yelled as I ran into the bathroom. And there I found him standing, shaking in pain, and screaming about a very big blister in a very bad place. I don’t know that there is anything that hurts him worse than when this happens. It doesn’t happen often, and there seems to be no rhyme or reason as to why it does, except that it was Christmas morning and things had been pretty perfect, and that just wouldn’t do. Obviously.
Jonah was screaming. I was holding him, in the bathroom, in a bear hug, telling him it would be OK. (It really wasn’t.) He gingerly walked into his room, still sobbing, and slammed his upper body face-first onto his bed.
“Why, God?” he screamed. “Why would you do this to me? Whyyyyyy?”
What do you even say to your child in this moment? How do you even respond to an impossible question you’ve been struggling to answer yourself for nearly 12 years?
I held him while he cried and tried to say all of the right things. That God did not make this happen. Sickness and pain and death are because of Satan and living in a broken world. It’s OK to be mad. It’s OK to feel sad and frustrated and to scream at God. He can certainly take it. But know that God is the one who comforts you in these times, not the one who causes them. That I definitely couldn’t understand how he was feeling, but that I was right here. I would be right here.
But y’all. I struggle all the time with the why. In my brain I know that God is good. Every good and perfect gift comes from him. And a blister on your very-sensitive-place does not seem like a good and perfect gift, so it can’t be from him. Neither can cancer or heart attacks or COVID-19.
But still, it sucks. And it feels like God could and should snap his fingers and make all this horrible crap go away. And it definitely feels like you shouldn’t get a more-horrid-than-usual blister on Christmas morning.
Besides a wrap patch and loads of Aquaphor, there hasn’t been much we’ve been able to do. He had days of crying and shaking every time he used the restroom. He is still hurting some, but now, on day 14, we are beyond the worst of it.
I want this column to have a nice, wrapped-up ending. I want to say that I’ve figured it out or that I’ve come to some kind of peace with the why. I have not. I doubt I will. I pray for research and a cure. I pray for fewer blisters on his fragile body. I pray for less pain. But I also pray, knowing that this side of heaven, there may be no relief for my sweet boy.
And some days, it really ticks me off. Especially on Christmas.
Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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