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It’s no secret that my 13-year-old son, Jonah, who battles epidermolysis bullosa (EB), has become a huge sports fan. His passion for sports began at age 6, when he could name every car — including the year, make, and model — he saw in a parking lot. That soon…
Recently, the Carolina Classic Fair came to our hometown. For 10 days, children, teens, and adults in our community enjoyed rickety rides, local crafts, giant produce, pickle pizza (no, that’s not a typo), and way too many questionably deep-fried foods. For most fairgoers, it meant days…
I write this column as the caregiver and (obviously supercool) mom of Jonah, 13, who has epidermolysis bullosa (EB). But today, I thought I’d let you guys hear from the star himself. He did me the honor of answering a few of my questions. PW: This is a serious…
My cellphone rang at work last Thursday at 1:21 p.m. It was a call from my son Jonah’s phone. While he was at school. Where he’s not allowed to use his phone. I knew that what awaited me when I answered wouldn’t be good. It wasn’t. “Mom,” said a panicked,…
Every rare disease family needs a Clair. Jonah has had one since second grade. My friend Lauren is currently praying for one as she and her husband prepare to bring baby Izzy home from the hospital soon. Honestly, I’m not sure how we made it for seven years…
Last week was our 19th annual “Cousin Camp” trip to the beach with my husband’s extended family. Thirty people attended, including 15 children ranging in age from 9 to 20 years old. It’s the favorite week of the year for our son Jonah, who has epidermolysis bullosa (EB), and…
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…
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,…
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