Treasuring the familiar while looking toward the next adventure

Jonah, my son with epidermolysis bullosa, graduated from eighth grade two weeks ago, when he walked across the stage of the amazing school he’s called home for the past nine years. School doesn’t feel like the right word, though — maybe community, home, or sanctuary. It’s the place that’s held him close, loved, and safe for roughly 64% of his life.

When he began kindergarten there nine years ago, his teacher gave me the opportunity to address the other children and their parents. “This is Jonah,” I introduced him. “He was born with very special skin. Have you ever fallen and gotten a boo-boo?”

“Oh, yes,” they said as they nodded. Several pointed out their current small injuries and equally impressive Spider-Man bandages.

“Well, when Jonah falls,” I continued, “he gets hurt really badly.” I went on to explain how he’s missing the protein (“stuff,” I likely called it) to keep his skin glued down. We then all proceeded to pinch and twist our skin to show how ours stays attached without injury. After a few more age-appropriate details and answering a few of their questions, that was it. The kids went off to their normal lessons in ABCs and 123s.

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His friends took in Jonah and loved him. They understood he had to take precautions and needed some extra help, and they witnessed one or two pretty scary falls and the resulting boo-boos. But never again did they wonder who this kid was, why he wore bandages, or “what happened to his face.”

The night after graduation, there was a formal dance for all of the middle schoolers. Instead of having the typically awkward, wallflower affair, the kids had a blast. They danced the night away. Individuals, pairs, and groups went nonstop for three hours.

Jonah (at far right in the middle row, in the navy blue vest and tie) poses with his eighth grade class at the Middle School Formal. (Courtesy of Patrice Williams)

At 9 p.m., when the dance was supposed to conclude, they began hugging goodbye. Then they started weeping — all of them, the boys as well as the girls. For the next hour and 15 minutes, they hugged and cried in what I later referred to as the Circle of Sorrow.

All of the parents stood around watching, mouths agape. We didn’t know whether to let it go on indefinitely or break it up, attempting to convince them that no one, in fact, was going off to war. Who was going to be the first parent to go in there and put an end to it? “I’m sorry, honey. I can see your heart is shattering, but it’s 10:15 p.m., and I’m an old lady who needs to sleep.”

At one point I texted my husband, Matt, “I think I’m going to die here.”

The next day I told Jonah he could have a few of them over. He invited 14. The night after that, he went for a sleepover at one of their houses. A couple of days later, they met at a rec center to play and then went to lunch afterward. He’s in constant contact with them through about five chat threads.

I hope they’re friends forever.

Life will change in high school. I know that. They’ll get involved in their different schools, start driving, get jobs, and — despite their parents’ wishes — grow up. I’m thankful for every moment in this life that Jonah gets, of course. But also, can’t the time go just a bit more slowly?

Six of them will be attending the same school he will next year. But they’re moving from a small school of about 250 students to a school 10 times that size. His graduating class in high school will have about 600 students. He’s used to a class of 24. We know the risks that come with a large school — overcrowding, potential for injury, the difficulty of finding your people. But he wants the big school, the bustling atmosphere, and the large sports programs.

All I want for him is for him to be seen. This time, I won’t go with him to talk to the students and parents who don’t know him. I won’t give the speech, and they won’t show me their boo-boos and bandages. I won’t be there to offer him a heads-up and a cushion to fall back on. He’ll be on his own. But his friends, whether they’re at the same school or not, will stay in touch and love him well.

Still, it won’t be the same. I know that. A door has closed just as a larger, scarier one is opening. I’m praying for eyes to see him, hearts to love him, and mouths full of words that build him up. (And maybe one or two 6-3, 250-pound linemen to befriend him, just in case.)

Here’s to scary open doors. Here’s to amazing old friends and the potential for amazing new ones. Here’s to life’s next big adventure!

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.