My Son Is Finding the Place Where He Belongs

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by Patrice Williams |

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I think middle schoolers are a bunch of weirdos. I thought this even before Jonah, my son with junctional epidermolysis bullosa (EB), was a middle schooler himself.

I have a K-12 education degree and taught high school Spanish for four years before having kids. When Jonah was in elementary school, I made the transition to teaching middle schoolers for a couple of years before moving to a new career path in 2019.

I was a good teacher. I knew how to keep my kids engaged and made learning fun. (For the most part. Verb conjugation can only be so much fun.) But when I made the transition to middle school, I struggled a bit. These creatures were emotional, confused, insecure, and dramatic. I felt like I had walked into a different world, and these adorable yet awkward aliens were speaking a different language.

They kind of smelled weird, too.

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When Jonah turned 11, my always-the-sweetest boy changed. He was still a sweet boy (most of the time), but he, too, turned emotional, confused, insecure, and dramatic. (I feel OK writing this because I tell him these things on the regular.)

Middle school years are so difficult. I would not go back and relive those years as a student if you paid me. I had two true friends, was regularly teased, and had no idea who I was or where I fit in the world. Or even at the lunch table.

Jonah goes to an incredible school and has a few great friends, but he still struggles. Imagine going through all the normal and hard middle school stuff and then having EB on top of it. I felt left out and unacceptable with crooked teeth, split ends, and bad breath. He deals with obvious wounds, full-body bandages, constant pain, a feeding tube, and being accompanied to school by a nurse.

And he handles it mostly like a champ.

But I’m his mom. I can see the anxiety he feels when he’s too small, too restricted, too high maintenance, or too breakable. He gets left out. It’s inadvertent and it’s no one’s fault. But it’s still his reality. Learning to live with EB is hard. Learning how to navigate EB while also navigating self-worth, self-confidence, acceptance, and purpose at times seems impossible.

Last Saturday, we were at an end-of-season pool party for our 8-year-old son Gideon’s baseball team. Jonah obviously doesn’t play on an 8U team, but is a junior manager of sorts. He is ever-present in the dugout at every game. He pep talks, coaches, encourages, and uplifts all the boys on his team. The coaches repeatedly tell me what a help and joy he is to the team. He has a uniform, a hat, and even a bat bag, all with the team’s logo. He proudly wears #5 and enjoys all the benefits, short of playing, of being on the team.

Belonging \ Epidermolysis Bullosa News \ Jonah and his brother, Gideon, pose at home plate with their coaches following a recent championship win

From front left, Jonah and his brother, Gideon, stand with their baseball coaches after a recent championship win. (Courtesy of Patrice Williams)

In the year that we’ve been with this team, a surprising thing has happened. These kids, these families, these coaches, they have become his people. They have become our people. They are a no-drama, no-clique, all-accepting community for us. And they have embraced Jonah as a coach in training from day one.

Jonah has found a place where he, comfortably and without self-doubt, belongs.

Belonging \ Epidermolysis Bullosa News \ Jonah, Gideon, pose with their baseball teammates, coaches, and parents at home plate on a baseball diamond

Jonah and Gideon with their baseball teammates, coaches, and parents after a recent championship win. (Courtesy of Patrice Williams)

At the pool party on Saturday, Jonah swam for a while and then got out to take a break. Before going back into the pool, he asked if he could take off his swim shirt before getting back in. “Are you sure?” I asked skeptically. He nodded. He was sure of himself.

So he climbed back into the pool, for the first time ever, without a shirt or bandages covering his chest and back. My boy, with his wounds shining and his G-tube protruding from his belly, confidently stepped back into the water and into the fun.

A couple of kids mentioned his wounds and his G-tube in a kind, inquisitive way. Jonah unabashedly explained about his tube and how his skin blisters everywhere — not just the places they normally see. Then the kids moved on. He is Jonah to them. Just Jonah.

Belonging \ Epidermolysis Bullosa News \ Jonah and his teammates pray on the baseball field before a game

Jonah prays with his team before a baseball game. (Photo by Patrice Williams)

I’m so thankful for this unexpected gift of belonging. I was so worried when Gideon started travel ball that it would alienate Jonah even more. I was hesitant, to say the least. I didn’t want him to feel more separated, unable to play baseball normally, and “stuck” watching his little brother live out his own dreams.

But God has done an amazing thing. Jonah has found a community he loves. And he’s found a way to pursue his passion in a new way by mentoring rather than playing. He is doing something he loves. And he’s fully comfortable and confident with his new band of little brothers. It’s an incredible thing to see.

Belonging \ Epidermolysis Bullosa News \ Jonah puts his arm around his brother, Gideon, as they line up with teammates for the National Anthem

Jonah stands with his arm around Gideon, his little brother, during the National Anthem before a recent game. (Courtesy of Patrice Williams)

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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.

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