Fragile but Fierce — Patrice Williams

I used to pray every day that God would heal Jonah, my son. I don’t pray for that anymore. It’s not that I don’t think God could do it. I’ve just come to believe that a snap-of-the-fingers miraculous healing won’t be how it happens for Jonah. I might be right…

Independence. It’s a concept we think about a lot this time of year. Together as a nation, we observe Juneteenth and the Fourth of July. And in the “land of the free,” we celebrate summer with beach trips, cookouts, watermelon, pool parties, fireworks, parades, outdoor concerts, and baseball games under…

My husband, Matt, and I just returned from six days and nights in the Riviera Maya, Mexico. We stayed at an adults-only, all-inclusive resort and spent most of our time by the crystal-clear beach waters and the beautiful pool. It was just what my soul needed. I love my kids.

Earlier this week, my son Jonah and I had a visit with his pain doctor, Dr. Savi. She is the coolest, even in the eyes of the ultimate coolness judge, a 15-year-old boy. She oohs and aahs appropriately over Jonah’s growth. I tell her Jonah is now 5 feet, 2…

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…

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…