Fragile but Fierce — Patrice Williams

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…

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…

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…

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’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…

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…

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…

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…

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…

“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…

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…