“Next we come to someone I have watched since he was very little,” she said, her voice beginning to break, “go from not being sure if he wanted to play dodgeball to coming into middle school and jumping in and being the team manager for, like, every team he could.
I went to get my first massage last week. Well, sort of my first. When Jonah, my son with epidermolysis bullosa (EB), was an infant and we were mostly homebound, a dear friend sent a masseuse to my house. I got a massage on a portable table in…
You guys. Why didn’t you message and tell me to “hush your face” after my last column? Someone should have said, “Patrice, you, my friend, are an idiot. Why did you say it out loud? Why did you pretend to have control? Why did you think you had the…
Thanksgiving is my favorite holiday. It’s all the feelings of togetherness and nostalgia without the commercialism and money-spending of Christmas that totally stress me out. I was so looking forward to the day with my extended family — until my son Jonah, who has epidermolysis bullosa (EB), got the…
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…
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