Get regular updates to your inbox.
When our son Jonah, who was born with epidermolysis bullosa (EB), was 3 years old, our requests for educational support and therapeutic services were denied for a second time by our school district. I was distraught. At that time in our state, when children with special needs turned 3,…
I’m 41 and a half years old, and I started therapy for the first time two weeks ago — real, consistent counseling that I plan to continue indefinitely. After our first son, Gabe, was stillborn — likely because of epidermolysis bullosa (EB), we suspect — and then…
I get so tired of thinking about epidermolysis bullosa (EB). Even as I sit down to write this column, I’m wondering, “What’s left to say?” My son Jonah was born with the condition, and we’ve spent 14 years dealing with it. There’s still no real treatment, and definitely…
Jonah, my son with epidermolysis bullosa, graduated from eighth grade two weeks ago, when he walked across the stage of the amazing school he’s called home for the past nine years. School doesn’t feel like the right word, though — maybe community, home, or sanctuary. It’s the…
“Mom,” my son Jonah, who has epidermolysis bullosa (EB), texted me a couple of weeks ago. “I just accidentally poked myself in the eye.” He’d just completed one of four straight days of standardized testing at school. Normally, it doesn’t matter if someone pokes themselves in the eye. And…
“Does he deal with depression?” my dad asked me the other day. I was explaining to him that Jonah, my 14-year-old son with epidermolysis bullosa (EB), had endured a rough couple of weeks. “I don’t know,” I responded. “Depression seems more like when you can’t really figure out…
My son Jonah turned 14 at the end of last month. To celebrate, he invited 10 (!) kids over to our house to hang out. They played basketball, darts, and pingpong and rode our go-kart. Except when they wanted food or cake, Jonah didn’t need me. I didn’t need to…
“Next we come to someone I have watched since he was very little,” she said, her voice beginning to break, “go from not being sure if he wanted to play dodgeball to coming into middle school and jumping in and being the team manager for, like, every team he could.
I went to get my first massage last week. Well, sort of my first. When Jonah, my son with epidermolysis bullosa (EB), was an infant and we were mostly homebound, a dear friend sent a masseuse to my house. I got a massage on a portable table in…
You guys. Why didn’t you message and tell me to “hush your face” after my last column? Someone should have said, “Patrice, you, my friend, are an idiot. Why did you say it out loud? Why did you pretend to have control? Why did you think you had the…
Thanksgiving is my favorite holiday. It’s all the feelings of togetherness and nostalgia without the commercialism and money-spending of Christmas that totally stress me out. I was so looking forward to the day with my extended family — until my son Jonah, who has epidermolysis bullosa (EB), got the…
It’s no secret that my 13-year-old son, Jonah, who battles epidermolysis bullosa (EB), has become a huge sports fan. His passion for sports began at age 6, when he could name every car — including the year, make, and model — he saw in a parking lot. That soon…
Get regular updates to your inbox.