Checking in with my son with EB after his 15th birthday

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 just a humble player in his story, a supporting character hopefully helping him move from surviving to thriving.

At the end of February, Jonah celebrated his 15th birthday. When he was diagnosed at birth, doctors told us there was an 85% chance he wouldn’t make it to his first birthday. Yet here we are, 15 years later. I’m sitting across from the most incredible human I’ve ever known.

The following is an excerpt of our conversation:

PW: What are you into these days? What do you like to do in your free time?

JW: I like to watch sports and play video games. Right now my favorite is NBA2K. I love going to Wake Forest University basketball games and getting to be on the court and in the locker room with the team.

How are you liking high school?

I like it OK. I’ve made some new friends, and I have good teachers. The work is hard, and sometimes it’s hard to find time for homework with dressing changes and everything. My favorite class right now is intro to newspapers. I really like the teacher, and I’m hoping to be a sports writer or a broadcaster, so I think it’ll help me.

Recommended Reading

December 7, 2023 Columns by Patrice Williams

We’ve learned to embrace hope — and to live big, too

What are you looking forward to in the next month?

I’m going to get my [driving] permit soon. I’m excited about driving. It’s a big responsibility. I’ll feel old. I’m also looking forward to the NCAA [basketball] tournament. I’m really hoping Wake Forest will get in. We haven’t made it in since 2017. My dad takes off work every year for the first round but says I have to go to school. I’m hoping we’ll get to watch it in class.

How does EB make your life harder? Is there anything positive that you’d say comes from your EB?

I’m hurting all the time. It’s also hard to find time to do things sometimes and manage my work with the wound care and tube feeding and everything. It’s also tough because I can’t do everything I want to do because of the physical limitations. But because of EB, I’ve had opportunities that other kids haven’t had — like helping out with Wake Forest basketball, taking a Make-A-Wish trip, being on a TV show, and having a friendship with race car driver Joey Logano.

Where do you see yourself in five years? In 10?

In five years, I hope to be a student at Wake Forest, majoring in something related to sports. In 10 years, I hope to have a job in sports and maybe be married or something. I don’t know. It’s hard to think about the future. In 10 years, will I still have to wear bandages? Will I have EB anymore? Maybe in 10 years we’ll have a cure.

As always, a few fun ones: What’s your favorite breakfast food and why?

Bacon. But it has to be crispy. Nobody likes floppy bacon.

Would you rather fight 100 duck-sized horses or one horse-sized duck?

I would rather fight 100 duck-sized horses because they’d just try to bump me in the ankles and I could kick them. Or I could pick two of them up and swing them around my head and throw them at the ones who were coming. And I’d just keep doing that until they’d all run away. Wait. Am I allowed to have weapons?

What would you do if you found a penguin in the freezer?

[Laughs.] First, I would scream. And then I’d start screaming at Gideon, my little brother, asking why he’d put a penguin in the freezer. Because it would definitely be his fault. But then the penguin and I would become friends. I’d teach it English and it would become my minion. I’m pretty sure it’d be a smart penguin so I’d have it do my homework. If it were a dumb penguin, I’d try to pawn it off on one of my friends. I’d lie about its level of intelligence, and then Dumb Penguin would be their problem.

What do you think of garden gnomes?

[Laughs more.] Garden gnomes are stupid. They stare you down and have no purpose except to be creepy. Also, what’s with the word “gnome” anyway? A silent “g”? Makes no sense. Just like their existence.

***

Poor duck-sized horses. Poor dumb penguins. Poor creepy garden gnomes. Jonah ain’t got no love for any of you.

Note: Epidermolysis Bullosa News 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 News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.