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.
Fragile but Fierce – a Column by Patrice Williams
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…
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…
He checks in with her and tells her he misses her when she’s gone. She tries to like sports and ask questions about the subject, just because she knows how much Jonah cares about it. She sends him photos when she’s on vacation. He regularly sends her the dumb…
It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn. Jonah, who was born with junctional epidermolysis bullosa (…
Jonah got his first promotional card from a college last week. We were told that my son, who’s now almost 16, very likely wouldn’t make it to his first birthday, because he was born with epidermolysis bullosa (EB). Now he’s just received an invitation to check out a college.
Note: This column describes the experiences of the author’s son with dupilumab. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Jonah, my son with epidermolysis bullosa (EB), and I just made another trip to Chicago right before Christmas. This…
Holidays and vacations always seem to highlight the little things about epidermolysis bullosa (EB) that make life different. My son Jonah has it much better than many other children with EB. Thankfully, he doesn’t deal with…
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