Fragile but Fierce — Patrice Williams

Over the past two weeks, my heart has been incredibly heavy, my eyes full of tears, and my soul full of sorrow as I witnessed the suffering of friends and co-workers in Western North Carolina. The destruction caused by…

“Mom, I need you upstairs,” Jonah said. “What is it?” I asked. “I just need you,” he responded. “Come right now.” Typically, exchanges like this one don’t happen nearly as much as they used to. As Jonah, my son…

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,…

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.

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…

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…

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…

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.

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…

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…

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.