Fragile but Fierce

Patrice Williams is mother to two boys: Jonah, who was born in 2009 with junctional epidermolysis bullosa, and Gideon. She is married to her sort-of high school sweetheart, Matt. They live in Winston-Salem, North Carolina with their two smelly dogs. Patrice works in communications for a nonprofit child welfare organization. She loves reading, spending time with family, and being outside. Her greatest talents are taking naps and eating tacos. She hopes this column will give hope to those living with epidermolysis bullosa and light to those who love them.

In the spirit of a famous very bad day, some vacations are like that

Have you ever read “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? Here’s a short excerpt: “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard…

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With my son taking the lead on his EB care, I feel hopeful for his future

A couple of weeks ago, our whole family was supposed to head to Florida, partly for a baseball tournament and partly for vacation. The trip came right on the heels of our beloved Cousin Camp (this year went much better than last, in case you were wondering), and my…

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17 years later, I’m still learning how to navigate EB — and parenthood

“We need to put sunscreen on you,” I said again to Jonah, my (sometimes stubborn) teenager who lives with epidermolysis bullosa (EB), as he stood out in the sun because he was shivering under the shade of the Shibumi. As Jonah ages and his skin doesn’t blister quite as…

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We can do hard things, but never alone

I walked across the stage earlier this month and received my master’s degree after two years of grad school. My husband, sons, siblings, and mom cheered for me from the stadium stands. “That’s my mom!” my 13-year-old son, Gideon, yelled after the cheering subsided. The audience collectively aww-ed while I…

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Daring to dream isn’t something I allowed myself to do — until now

“I just bought a prom ticket,” my son Jonah, who lives with epidermolysis bullosa (EB), texted me a week before the event. I responded with three giant ‼️ emojis (making six giant, red exclamation points, in case that was unclear). Like the unexcitable person that I am. I had…

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When epidermolysis bullosa dashes my false sense of security

Back in mid-January, my son Jonah, who battles junctional epidermolysis bullosa on a daily basis, got the flu. I had (unintentionally) neglected to get him a flu shot, and although it was influenza B — supposedly the less severe strain — and he was on Tamiflu (oseltamivir), it kicked…

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A Q&A with my son about life and EB ahead of his 17th birthday

Every couple of years, I interview my son Jonah, who was born with junctional epidermolysis bullosa (EB). After all, it’s his life I’m writing about, so it’s good to get his perspective. Excerpts of our conversation, lightly edited for clarity and style, follow. PW: You’re about to turn 17.

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A new year brings new resolutions (for my son, not for me)

Typically, I’m not big on New Year’s resolutions. I am a fairly intelligent and hardworking person, but I hate failing. So, for me, welcoming the new year with haven’t-done-it-yet-so-probably-won’t-work-now resolutions feels like putting my best foot forward just to give up the walk 10 days in. Look, I know this…

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Searching for a faith community that fulfills our family’s needs

The holiday season always seems a little strange to me, as it’s a time for family and looking forward, but also a time to look back. This holiday season, I’m acutely aware of the narrowing of our family’s faith community over the last five years. Until 2020, having a faith…

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Meeting another EB mom who ‘gets it’ is a cherished connection

The first time I ever heard from her or saw her name was March 2, 2009. She left a comment on my blog when I was in the depths of gripping fear and the deepest sorrow. These were her words to me then, when…

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What does home mean to my son with EB?

I spent the last two hours at work the other day reading song lyrics, poetry, and quotes. Along with my communications team, I was attempting to brainstorm a name and tagline for the new adoption program we’re launching at our child welfare agency. I’ve also been using Google to search…

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What my realistic self-care plan looks like in a busy season of life

The organization where I work is governed by a model that asks each employee to have a self-care plan. Each month, our supervisor is supposed to ask if we’ve been using it and what they can do to help ensure we do so. Honestly, I don’t even know what’s…