Experiencing the pain and beauty of closing a life chapter

“Next we come to someone I have watched since he was very little,” she said, her voice beginning to break, “go from not being sure if he wanted to play dodgeball to coming into middle school and jumping in and being the team manager for, like, every team he could.

“Jonah Williams!” the middle school athletic director yelled as my son jogged through the cheerleader tunnel on Eighth Grade Night at his last regular season home game. “And he is the best team manager in the world,” she finished. Jonah found his best friend at the end of the player line, where they did their personalized handshake and ended in a huge hug as the crowd applauded.

Why, oh why, did I wear mascara?

Jonah dresses up in “hypewear” for a recent basketball tournament game. (Photo by Patrice Williams)

I’m pretty sure that every single school moment from now until the end of May will be a “brutiful” (brutal and beautiful) combination of sweet and heart-wrenching. Here is my child, born with junctional epidermolysis bullosa (EB), given only a 20% chance of surviving until his first birthday, about to graduate from eighth grade. A fragile, delicate, timid toddler turned into a confident, funny, and (mostly) positive teenager. He’s surrounded by love, lifted up by friends, and treasured by so many.

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Nine years of love and acceptance

Jonah has attended the same small school since kindergarten. He has been with the same group of friends and classmates for nine years. I remember going into his classroom on his first day and talking to a sweet group of 5-year-olds about his special skin. I introduced Jonah and explained EB in a way they could understand. Like most children that age, they were more curious than anything. After a couple of questions, I left the classroom, Jonah was embraced by his peers, and it’s been that way ever since.

Jonah and his family attend open house and meet his kindergarten teacher in August 2014. (Photos by Patrice Williams)

Besides a few bad accidents here and there, Jonah has had an incredible elementary and middle school experience. He’s fortunate to go to a school where the learning is real and hands-on, and the focus is not on testing. Before he hit middle school, none of his classes had more than 12 students. He’s studied history through living books, learned science by digging outside in the dirt, and gone on dozens of meaningful field trips.

By the time he hit middle school, he was becoming a serious sports lover and decided to manage his school’s soccer and basketball teams. He’s been the best hype man you could ask for. He cheers on his friends from the sidelines and spends little time resenting that he’s unable to be out there with them. He’s loved every minute of pep talks, huddles, moments of wins (not so much the losses), and team dinners. He’s learned invaluable lessons about teamwork, team spirit, and overcoming disappointment.

Jonah, in front, and his middle school friends at a recent school dance. (Photo by Patrice Williams)

Teachers, coaches, and staff have poured into his life for the past nine years. And I can’t believe it’s about to end. His school has been a safe haven for him in an often cruel world. His teachers and friends haven’t seen his boo-boos and inabilities. They’ve seen his potential, charm, intelligence, and wit. They’ve seen him for exactly who he is and spoken into him the love and confidence he’ll need to become the man God is calling him to be.

Does he know how blessed he is?

May graduation will be here before we know it. Jonah is opting to attend the local public high school in the fall. He wants big-division sports and the full public school experience. I don’t believe in keeping him sheltered. I want for him the diversity and unique experiences that kind of environment will offer. But I’m also scared to death.

Will they see in him the wonderful person he is behind the wounds? Will they give him a chance? Will they embrace the sensitive heart that beats underneath the bandages? Will they understand the pain he’s endured and the way he’s fought to make it to high school?

I know it’s the next step and that this is all a part of growing up. But the next few months will be incredibly difficult as we close the door on such a beautiful chapter of his life.

How do you say goodbye to the people who have loved you, grown you, and been your safety net every day for the past nine years? 

I know we have to. But that doesn’t make it hurt any less.

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.