In another bummer turn of events, my 11-year-old son Jonah woke up on Sunday morning with a corneal abrasion. These, and the types of blisters he experienced on Christmas, are two of the most painful things he endures.
He hasn’t dealt with an eye abrasion in almost a year, and we are so thankful. But like with everything related to epidermolysis bullosa, as soon as you think you might be out of the woods, you are proven wrong.
Jonah used to get corneal abrasions every month or two from the time he was a toddler until he was in about first grade. I don’t know why he was more prone to them then, but he definitely gets them much less frequently now.
They involve excruciating pain, missed school, and sometimes days in the complete dark. Most of the time, depending on severity, not only can he not open the wounded eye, he can’t open the healthy eye, either. He is terrified that opening the good one may pull the blistered one open, too.
Over time, we’ve learned how to best help him. We invested in blackout curtains, and I’ve even gone so far as to tape the edges of them to the wall, so not even a strip of light can get through. We rotate ibuprofen and acetaminophen every three hours.
We try to squeeze drops into the good eye when he’ll let us so it doesn’t dry out, too. Some EB caregivers suggest ice packs or warm tea bags on the eyes. Others somehow manage to squeeze drops in the bad eye to aid healing, but Jonah has never allowed us to do that.
We also use eye patches to try to keep the bad one closed, in hopes that he can open the healthy one. Often that’s possible on day two.
In-the-dark boredom is the worst. Although he doesn’t love it as he gets older, we have tried audiobooks and music to kill the time. When Jonah was much younger, family members, friends, and even his teachers would come by and read to him and chat with him to help him pass the time. Now, at 11, he seems to prefer privacy. (But he definitely still craves Mommy snuggles and wants Dad to bring him chocolate chip cookies from the grocery bakery.)
To prevent corneal abrasions, we use Celluvisc eyedrops each night before bed. I also apply eyedrops during the day if the air is especially dry, if he’s been driving his go-kart, if he’s been at the dusty ball field, or if he’s been outside on a windy day. I run a humidifier in his room each night to help keep the air moist.
Even with these measures, things happen. Again, there is no rhyme or reason. It just is. It’s enough to make a control-freak mom like me want to punch a wall.
As I was looking back through my corneal abrasion blog posts, I found the following from November 2014:
“Although I HATE EB and all it has done to my Jonah the last two weeks especially, I am overwhelmed (and sporadically in tears) over how incredibly loved we are. To know you guys are praying for him, thinking about him, asking how you can help… it’s so good. […] So as much as I hate EB, I think about how much we might be missing out on if we weren’t forced to slow down and let ourselves be loved. It’s an important thing. To ask for help, to let people into your life, to be real with each other. To be vulnerable. I’m thankful for the hundreds (thousands?) who love and pray for us. And I’m thankful to know it. Fully.”
Some days, I can see the positive, like I did on the day I wrote that post. And some days, I can’t. It’s the same for Jonah. Sometimes he feels like looking on the bright side, and sometimes he just needs to be angry.
My job as his mom is to give him the grace and the safe space to feel all of his feelings. It’s the only way we know — trudging through the bad, fighting till we make it out on the other side.
For a dose of adorableness, check out this video of 4-year-old Jonah telling a story while passing the time in the dark with an eye abrasion.
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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