Every couple of years, I like to interview Jonah, my son with epidermolysis bullosa (EB), for this column. You can read past conversations here, here, and here. It’s important to me for the world to hear his voice, especially as he gets older. Ultimately, I’m…
Fragile but Fierce – a Column by Patrice Williams
We’ve always been the family that gets stares. Jonah, our son with epidermolysis bullosa (EB), with his wounds and bandages, always earns us looks from strangers. Even if the skin on Jonah’s face is pretty clear and his bandages are covered by clothing, we still get looks. “Why?” I’ll…
Jack’s first memory of Jonah, my son with epidermolysis bullosa (EB), was at Jonah’s first birthday bash in 2010. It was a party to rival all parties, complete with carnival games, a petting zoo, and a three-decker cake. We didn’t think Jonah would make it to his first birthday,…
At a men’s basketball game last week at Wake Forest University, my son Jonah, who was born with epidermolysis bullosa (EB), stood at center court during a first-half timeout. As a crowd of more than 8,000 fans rose to their feet applauding my son, the athletic director presented him…
My therapist says I have “high-functioning” anxiety. This is not news to me. I’m thankful to have confirmation of what I’ve known for decades. In childhood, my high-functioning anxiety stemmed from doing everything my parents told me to do, as I was constantly afraid I might mess up.
I went to a baby’s funeral last week. I have been to too many babies’ funerals. Counting last week’s, I’ve been to six in the past 15 years, beginning with my own son’s after his stillbirth in 2008. Six. Six children gone in what seems like a breath. Even…
When our son Jonah, who was born with epidermolysis bullosa (EB), was 3 years old, our requests for educational support and therapeutic services were denied for a second time by our school district. I was distraught. At that time in our state, when children with special needs turned 3,…
I’m 41 and a half years old, and I started therapy for the first time two weeks ago — real, consistent counseling that I plan to continue indefinitely. After our first son, Gabe, was stillborn — likely because of epidermolysis bullosa (EB), we suspect — and then…
I get so tired of thinking about epidermolysis bullosa (EB). Even as I sit down to write this column, I’m wondering, “What’s left to say?” My son Jonah was born with the condition, and we’ve spent 14 years dealing with it. There’s still no real treatment, and definitely…
Jonah, my son with epidermolysis bullosa, graduated from eighth grade two weeks ago, when he walked across the stage of the amazing school he’s called home for the past nine years. School doesn’t feel like the right word, though — maybe community, home, or sanctuary. It’s the…
“Mom,” my son Jonah, who has epidermolysis bullosa (EB), texted me a couple of weeks ago. “I just accidentally poked myself in the eye.” He’d just completed one of four straight days of standardized testing at school. Normally, it doesn’t matter if someone pokes themselves in the eye. And…
“Does he deal with depression?” my dad asked me the other day. I was explaining to him that Jonah, my 14-year-old son with epidermolysis bullosa (EB), had endured a rough couple of weeks. “I don’t know,” I responded. “Depression seems more like when you can’t really figure out…
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