It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn. Jonah, who was born with junctional epidermolysis bullosa (…
Jonah got his first promotional card from a college last week. We were told that my son, who’s now almost 16, very likely wouldn’t make it to his first birthday, because he was born with epidermolysis bullosa (EB). Now he’s just received an invitation to check out a college.
Note: This column describes the experiences of the author’s son with dupilumab. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Jonah, my son with epidermolysis bullosa (EB), and I just made another trip to Chicago right before Christmas. This…
Holidays and vacations always seem to highlight the little things about epidermolysis bullosa (EB) that make life different. My son Jonah has it much better than many other children with EB. Thankfully, he doesn’t deal with…
Over the past two weeks, my heart has been incredibly heavy, my eyes full of tears, and my soul full of sorrow as I witnessed the suffering of friends and co-workers in Western North Carolina. The destruction caused by Hurricane Helene is catastrophic. If you’ve never been to the North…
“Mom, I need you upstairs,” Jonah said. “What is it?” I asked. “I just need you,” he responded. “Come right now.” Typically, exchanges like this one don’t happen nearly as much as they used to. As Jonah, my son with epidermolysis bullosa (EB), has gotten older, he’s become more…
I used to pray every day that God would heal Jonah, my son. I don’t pray for that anymore. It’s not that I don’t think God could do it. I’ve just come to believe that a snap-of-the-fingers miraculous healing won’t be how it happens for Jonah. I might be right…
Independence. It’s a concept we think about a lot this time of year. Together as a nation, we observe Juneteenth and the Fourth of July. And in the “land of the free,” we celebrate summer with beach trips, cookouts, watermelon, pool parties, fireworks, parades, outdoor concerts, and baseball games under…
My husband, Matt, and I just returned from six days and nights in the Riviera Maya, Mexico. We stayed at an adults-only, all-inclusive resort and spent most of our time by the crystal-clear beach waters and the beautiful pool. It was just what my soul needed. I love my kids.
Earlier this week, my son Jonah and I had a visit with his pain doctor, Dr. Savi. She is the coolest, even in the eyes of the ultimate coolness judge, a 15-year-old boy. She oohs and aahs appropriately over Jonah’s growth. I tell her Jonah is now 5 feet, 2…
Every couple of years, I like to interview Jonah, my son with epidermolysis bullosa (EB), for this column. You can read past conversations here, here, and here. It’s important to me for the world to hear his voice, especially as he gets older. Ultimately, I’m…
We’ve always been the family that gets stares. Jonah, our son with epidermolysis bullosa (EB), with his wounds and bandages, always earns us looks from strangers. Even if the skin on Jonah’s face is pretty clear and his bandages are covered by clothing, we still get looks. “Why?” I’ll…
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