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As we settle into 2023, I’m thinking about my usual preference to remain in my comfort zone rather than taking risks. I have always been afraid of change, but this time, I’ve decided to leave excuses behind. Life has presented me so many opportunities, and my gut told me…
“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…
I’m currently rewatching the “Sex and the City” TV series for the third or fourth time. Now that I’m closer in age to the main characters, I relate even more to their feelings, thoughts, and struggles regarding dating. While the women face various insecurities, I think I can add…
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…
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,…
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