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 honor of my life. I wanted him to have a chance to share his heart in today’s column — and in the next one, too, because apparently he is long-winded. (What can I say? The apple doesn’t fall far.)

Excerpts of our conversation follow:

PW: How do you explain EB to other people?

JW: Usually to a kid I say, “Have you ever had a boo-boo? I just have a lot of boo-boos.” To an adult I say, “I was born with a rare, genetic skin condition that causes my skin to be fragile.”

Jonah on a short hike with his family. (Courtesy of Patrice Williams)

What do you wish people knew about EB?

I wish they knew what I go through; that they understood all the prep work it takes for me to be able to get ready each day. I wish they knew about the dressing changes and the pain I go through. I’m not saying I want them to go through that. I just wish they knew. If I’m out in public and getting stared at, I wish they knew I was mostly just like everyone else. I wish they would treat me like they would treat any middle schooler.

What is the hardest part of EB, physically?

There are a lot of rough parts. I have to do dressing changes every other day and wound care several times a day. Not being able to play sports is really tough. And when I do try to play sports, it’s really rough on my body. Any time I have a bad fall, the skin on my hands, or wherever I hit,  just comes off.

I get corneal abrasions, blisters on my eyes, and have to stay in the dark for a couple of days with my eyes closed. Any light at all makes it hurt so much worse. And when I get mouth blisters, on my tongue, lips, or in my throat, the worst part is not being able to eat or sometimes even talk for a couple of days.

What is the hardest part of EB, emotionally?

Sometimes I feel like I’m the odd man out, like I don’t fit in. I’ve felt that a lot more in the past two years as I’ve gotten older. When we’re playing sports or games or anything really at school, and especially when we’re pairing up, I’m always scrambling and looking for a partner. Nobody picks me. They’re always picking their best friend.

At snack sometimes, I eat by myself. It feels very lonely. It makes me sad in my heart. I don’t know if all that is because of EB or not.

Jonah at a minor league baseball game with his family. (Courtesy of Patrice Williams)

What ways have you learned to cope with EB?

My nurses help a bunch, not just with the medical stuff, but mentally, too. They’re both super great. I love how nice they are and that they take time to help me. Sometimes when I feel like the odd man out, when I feel lonely, they’re my best friends. They go out of their way to make sure I feel loved and happy.

My dogs, Joey and Deac, are comforting. We play and snuggle, and that helps. When I feel down, I do a lot of praying. I try not to get stuck in the sadness. Playing outside with my brother, or watching a movie with my family, or talking about sports with my dad helps me get my mind off of it.

What is a day in your life like?

I get up in the morning and do all the regular stuff that everybody has to do, but my mom has to drain blisters, change my bandaging that’s gotten dirty, and take care of boo-boos that are underneath the bandages. I also get tube-fed, all before school. I go to school with my nurse and have a pretty typical day. They tube-feed me lunch and help me get through my day. If I can’t participate in physical education or recess, I’ll sit with them, and we talk about stuff.

After school, I come home, take a very short break, and then on Mondays, Wednesdays, and Fridays, start bath and bandage change almost immediately. That takes about two hours. Then I do homework and get tube-fed again. I do eat some with my mouth, but not enough. On Tuesdays and Thursdays, I get to skip bath and bandages, so that gives me more time for homework … and maybe some video games.

Before bed, we drain the blisters on my hands, face, and feet. I have to do eye drops in my eyes before bed to help protect them from corneal abrasions.

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Click here for part two of the interview.

Jonah snuggling with one of his dogs in bed. (Courtesy of Patrice Williams)

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Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.