Columns

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…

My life has been crazy lately, in good and bad ways. I’ve confronted many challenges and felt like I’d reached my limit in certain areas. I even lost focus, forgetting to do things that make me happy and boost my confidence, such as playing sports. I also experienced moments…

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…

I recently wondered why we who live with rare conditions often get told how to feel. I’ve experienced this instruction in many different situations. When strangers see me with my scars and bandages, many tell me, “Oh, no, it must be so awful living with your disease. Your life must…

“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…

Occasionally, I forget that I live with a rare disease. For me, that’s a good thing. It means I’m doing well enough that my condition doesn’t bother me on a day-to-day basis. But sometimes, my body will say, “Hey, stop! You have a condition to consider. You need to take…

“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…

As we settle into 2023, I’m thinking about my usual preference to remain in my comfort zone rather than taking risks. I have always been afraid of change, but this time, I’ve decided to leave excuses behind. Life has presented me so many opportunities, and my gut told me…

“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.