Author Archives: Patrice Williams

Put Courage Into Those Facing Hard Battles

I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome and an interrupted aortic arch. She is home now, on supplemental oxygen, after spending more than three months…

Life Is Hard, but We Choose Joy Anyway

On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my bonnet, as older folks in the South like to say. I decided I wanted my boys to hunt for their…

Remembering to Anticipate the Good

“Dilly Dilly!” Jonah said as he drank yet another virgin strawberry daiquiri. “Do we have these in America?” he asked with pink-tinged lips, looking hopeful. He finished, yanked off his shirt, G-tube shining, and headed to the wave pool. Again. Jonah enjoys his new favorite drink, a virgin strawberry…

Celebrating 13 Years of Our Miracle

I went down a rabbit hole this morning reading my old blog posts from 13 years ago, when our son Jonah was born. I teared up as I read the prayers I requested on the eve of his birth. My husband, Matt, and I had lost our first son,…

An EB Q&A for Rare Disease Day

In light of Rare Disease Day on Feb. 28, I wanted to answer some common questions I am asked about my son Jonah, who has epidermolysis bullosa. This will be a pretty good column, but if you want to read something even cooler, you should head back to this…

Remembering to Be Grateful in the Pain

“Does he even know that it’s not normal?” my friend Trent asked. He was referring to the fact that my son Jonah, once again, was getting to do some ridiculous, once-in-a-lifetime thing. This time it was attending the World Series. An anonymous donor had contacted a fellow EB dad to…

Slowing Down to Sit in the Suffering

After more than 12 years of watching my son, Jonah, battle epidermolysis bullosa, and battling it myself as a caregiver, I have found myself becoming robotic, overly acclimated to our normal. I’m no mental health expert, but I imagine this has something to do with my…

The Struggle of Heading Back to School

Heading back to school has always been a bit rough for my son Jonah, who lives with junctional epidermolysis bullosa (EB). Now that he is a middle schooler, things seem to become increasingly frustrating and difficult for him each year. This is partly due to his painful and abnormal life…

My Son Is Finding the Place Where He Belongs

I think middle schoolers are a bunch of weirdos. I thought this even before Jonah, my son with junctional epidermolysis bullosa (EB), was a middle schooler himself. I have a K-12 education degree and taught high school Spanish for four years before having kids. When Jonah was in elementary…