Last week in North Carolina, the feel-like temperature was 105 F. And this week has been in the mid-90s. It’s this hot already, and it’s only mid-June. That’s hot for anyone, but for someone with epidermolysis bullosa (EB) like my son Jonah, it’s almost unbearable. Imagine going out…
Fragile but Fierce – a Column by Patrice Williams
I heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. I know it well. Here we were again at an event that should be all fun, and he couldn’t…
I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome and an interrupted aortic arch. She is home now, on supplemental oxygen, after spending more than three months…
On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my bonnet, as older folks in the South like to say. I decided I wanted my boys to hunt for their…
“Dilly Dilly!” Jonah said as he drank yet another virgin strawberry daiquiri. “Do we have these in America?” he asked with pink-tinged lips, looking hopeful. He finished, yanked off his shirt, G-tube shining, and headed to the wave pool. Again. Jonah enjoys his new favorite drink, a virgin strawberry…
I went down a rabbit hole this morning reading my old blog posts from 13 years ago, when our son Jonah was born. I teared up as I read the prayers I requested on the eve of his birth. My husband, Matt, and I had lost our first son,…
It has been 13 years since we spent 32 days in the neonatal intensive care unit with our son Jonah, who was born with junctional epidermolysis bullosa. As the years have passed, the feelings, sounds, and smells of those days have faded. The beeping of the machines maintaining baby…
My son Jonah, 12, had oral surgery on Dec. 22, which involved a simple extraction and some coating on his teeth to make them smoother. For most children, this probably wouldn’t have been a big deal. But for Jonah, who has epidermolysis bullosa (EB), the surgery was disastrous.
“Does he even know that it’s not normal?” my friend Trent asked. He was referring to the fact that my son Jonah, once again, was getting to do some ridiculous, once-in-a-lifetime thing. This time it was attending the World Series. An anonymous donor had contacted a fellow EB dad to…
My husband and I knew we would have problems to contend with after our son Jonah was born with epidermolysis bullosa (EB). We’d have to think about things like wound care, bandaging, tube feeding, and weight gain. What we didn’t know was how creative…
After more than 12 years of watching my son, Jonah, battle epidermolysis bullosa, and battling it myself as a caregiver, I have found myself becoming robotic, overly acclimated to our normal. I’m no mental health expert, but I imagine this has something to do with my…
Heading back to school has always been a bit rough for my son Jonah, who lives with junctional epidermolysis bullosa (EB). Now that he is a middle schooler, things seem to become increasingly frustrating and difficult for him each year. This is partly due to his painful and abnormal life…
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