Fragile but Fierce — Patrice Williams

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…

“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…

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…

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…

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…

“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…

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,…

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…

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…

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…

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…

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…