A Few of Our Favorite Things
Oprah recently released her Favorite Things 2020 list, and it got me thinking of my own favorites list. What are some of the things that have made our lives a bit easier amid the struggles? Our family has made several…
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.
When EB Steals Your Cat
My mom got an adorable kitten last weekend. When I showed my boys the sweet picture she texted us, Jonah questioned me about our cat that we re-homed when he was little. (Photos courtesy of Patrice Williams) “Why did we get rid of…
The Difficult Decision in Favor of a Feeding Tube, Part 2
Last in a series. Read part one. After our son Jonah was born with junctional epidermolysis bullosa, we made the difficult decision for him to get a gastrostomy feeding tube. Once it was decided, things went into motion pretty quickly. To…
The Difficult Decision in Favor of a Feeding Tube, Part 1
First in a two-part series. Our son Jonah, who was born with junctional epidermolysis bullosa in 2009, struggled to eat from the beginning. It was one of the main reasons he had to remain in the NICU after he was born. Jonah finally ate…
Interview With the Butterfly, Part 2
Last in a series. Read part one. I continued an interview this week with my son Jonah, who is 11 and was born with junctional epidermolysis bullosa (EB), after we both got a bit long-winded the last time we sat down to chat.
Interview With the Butterfly, Part 1
First in a series. My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and in the sixth grade. I am honored to write this column about EB, but Jonah is the one we need to hear from. Being his mom is the greatest…
Focusing on the Manna for Today
Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey with epidermolysis bullosa began. In some ways, it feels like it’s been much longer, and…
If You Are Struggling, Find Your Army
When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, when joined together, made for a monster disease that ravaged our sweet baby’s tender body. Our first…
Choosing Between Bad and Worse, I Learned to Become an Advocate
The scariest thing about a rare disease is that nobody has the answers you’re desperately seeking. When you are facing something so unfamiliar and the people who are supposed to know don’t, it’s terrifying. The first couple months of the life of my son…
My Butterfly Baby
In most cases I don’t agree that “ignorance is bliss.” In general, the more information we have, the better people we are and the wiser our choices. But there are certainly some things I wish I didn’t have firsthand knowledge of. I wish I didn’t know how McDonald’s…
Recent Posts