Columns

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…

Last week, I turned 29. And for the first time, turning a year older made me think. We often hear people say, “By the time I turn 30, I want to have achieved X, Y, and Z.” I never put a time frame on my goals. But now that 30…

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…

While I speak openly about the everyday problems I face while living with epidermolysis bullosa, or how I wish society would view us differently and end the stigma around disabled people, I rarely discuss those really hard moments I have with my skin. This is because at…

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…

With summer comes traveling again. For people living with a rare condition, traveling always requires significant preparation, as I discussed in my previous column. When I wrote it, I was busy packing for summer vacation. I packed my beach towel, bikinis, sunglasses — and wound dressings, bandages, needles,…

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…

“A journey of a thousand miles begins with a single step.” – Laotzu I just finished packing my bags for my first flight in more than two years. (Yay, we can travel again!) But while a trip may begin with a single step for some, traveling requires many more steps…