Fragile but Fierce – a Column by Patrice Williams

Patrice is mother to two boys: 8-year-old Gideon and 11-year-old Jonah, who was diagnosed at birth, in 2009, with junctional epidermolysis bullosa. She is married to her sort-of high school sweetheart, Matt. They live in North Carolina with their two smelly dogs. Patrice loves reading, spending time with family, and being outside. Her greatest talents are taking naps and eating tacos. She hopes this column will give hope to those living with epidermolysis bullosa and light to those who love them.

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…

Doing Whatever It Takes to Make the Trip

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…

Witnessing God’s Goodness in the Suffering

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,…

Choose Kindness When Faced With Differences

“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…

Overcoming the Bad Days and Finding Joy

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…

How We Began Educating Our Community About EB

There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was younger, I would intercept the stares, block him with my body, and do the educating…