Fragile but Fierce – a Column by Patrice Williams

This has been the summer of trips, which is totally unlike our typical summer. We go to Cousin Camp annually, but it’s typically the only big trip we take. But recently we were invited by family to come to Montana for the week, and we absolutely could not pass…

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…

“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…

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…

“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…

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…

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.

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…

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…

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…

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…

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…