Fragile but Fierce – a Column by Patrice Williams

It has been 13 years since we spent 32 days in the neonatal intensive care unit with our son Jonah, who was born with junctional epidermolysis bullosa. As the years have passed, the feelings, sounds, and smells of those days have faded. The beeping of the machines maintaining baby…

My son Jonah, 12, had oral surgery on Dec. 22, which involved a simple extraction and some coating on his teeth to make them smoother. For most children, this probably wouldn’t have been a big deal. But for Jonah, who has epidermolysis bullosa (EB), the surgery was disastrous.

“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…

My husband and I knew we would have problems to contend with after our son Jonah was born with epidermolysis bullosa (EB). We’d have to think about things like wound care, bandaging, tube feeding, and weight gain. What we didn’t know was how creative…

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…

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…

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…

I love Facebook‘s Memories feature. Although it can be a negative space, I do value it as a digital scrapbook for our family. Each day I open the app and reflect on what has happened on that day in previous years. There are hilarious stories, like the time our…

I’m avoiding packing. I have a two-page packing list with three columns per page staring up at me from my kitchen counter. I feel the printed pages mocking me as I pace the floors trying to get started. We leave for the beach in 48 hours, and I’m frozen in…

Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the contents piled on the dining room table waiting for it to magically clean itself up. After three days,…

“Did a wolf attack your face?”  That’s what the preteen asked my son Jonah, who was born with junctional epidermolysis bullosa, when Jonah approached their group to play whiffle ball. It was between his brother’s Carolina Wolfpack baseball games. Jonah was…

We have good days and bad days, and good weeks and bad weeks. Twelve years into our fight with epidermolysis bullosa, we’re pretty used to the ups and downs. But two weeks ago, we had one of our worst weeks ever.  It started on Tuesday…