Watching my son come into his own with grace and a generous spirit

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 often wonder. And then I remember that our other son, Gideon, whom we adopted through foster care, is biracial. They’re probably looking at him — or at least at the combination of him and us.

The reality is that, for different reasons, our sons’ skin doesn’t “match” that of their parents. That’s neither here nor there, as far as our family’s love and sense of belonging are concerned. My husband, Matt, and I honestly couldn’t care less. But I often worry, especially for Jonah, how the stares and comments must make him feel.

Have you ever read the book “Wonder” by R.J. Palacio? If you haven’t, I highly recommend it. It’s about a boy with a facial difference and the reactions he gets, and it’s sad and heartbreaking while simultaneously triumphant and uplifting. I loved it and hated it. As a mother to a son who looks different from his peers, it gave a voice to everything I’ve worried about through the years but hoped wasn’t true.

Yes, people can be kind and amazing. And mostly, that’s our experience. But there’s no denying that some can be self-absorbed and occasionally cruel.

Jonah has been on the receiving end of very few instances of outright cruelty, and I thank God for that, truly. I wholeheartedly believe it’s by his grace and protection that Jonah has mostly felt supported and loved. It helps, too, that God gave him a funny and outgoing personality and the uncanny ability to easily talk to both kids and strangers, seemingly effortlessly.

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I need a break from the constant demands of epidermolysis bullosa

There was one time at vacation Bible school when a child asked Jonah (then age 6 or so) what was “wrong” with him, and then proceeded to hit and kick him on purpose in different spots, while saying, “Does that hurt? Does that hurt? Does that hurt?” I may or may not have found the kid hiding under a church pew at pickup time and threatened to rain down holy mother (not that Holy Mother) terror on him if he ever touched my kid again. I maybe even ended my big-eyed, teacher-stare tirade with the words, “Try me.” He decided not to try me.

Shining parental moment.

Now, a proud mom moment

Overall, though, people are kind. Sometimes too inquisitive, but mostly kind. It’s been amazing to see Jonah enter and embrace high school and gracefully handle questions.

Jonah (back row, fourth from left) enjoys a recent high school basketball game with friends. (Courtesy of Patrice Williams)

He came home with a funny story last week. He was sitting in his intro to journalism class when a classmate spotted his phone. Jonah’s phone wallpaper is his professional Wake Forest University recruitment photo, in which he’s wearing his official jersey and holding a basketball. His classmate saw it and said, “Lookin’ all famous with your screen pic.”

Jonah’s response? He laughed and said, “Google me. No, really. Google me.” The kid googled Jonah and found that he was, indeed, a teeny bit famous.

The kid then saw an article about Jonah and said, “Oh! You have that butterfly skin thing?” Jonah responded that he did. The kid looked over at the friend sitting next to him and said, “See? I told you.”

First of all, it’s amazing that the kid knew about EB. Second, I love how it happened organically, and Jonah was able to confidently say “Google me” and laugh at the result.

It’s been amazing to see him handle his circumstances with such grace. Of course, he has his low moments. But for the most part, he’s developing relationships and handling the inevitable questions with humor and positivity. Jonah has every right to be sad or angry, or to focus on the things that make him different. And yet he’s mostly happy, open-hearted, and generous in spirit.

I’m so stinkin’ proud of him. What an honor it is to be his mom.

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.