Daring to dream isn’t something I allowed myself to do — until now

“I just bought a prom ticket,” my son Jonah, who lives with epidermolysis bullosa (EB), texted me a week before the event.

I responded with three giant ‼️ emojis (making six giant, red exclamation points, in case that was unclear). Like the unexcitable person that I am.

I had asked Jonah several times if he had any interest in going to the prom, and he’d shrugged it off. But one day in class, a friend asked him if he’d like to come over to her house and take pictures with a big group that was going together, and he was all in. I told him he would love it, that going with friends was 100% the most fun way to do it.

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So, nonchalantly, I started barrage-texting him. “Black tux? Bow tie or regular tie? Tie color preference?”

“I have to think about it,” he texted back.

“Well, you have to think quickly because if you don’t, it won’t deliver in time,” I responded, full of chill.

The next day, I ordered six different suits, three dress shirts, a belt, and new Air Force Ones for him because here was another dream I’d never dreamed, a day I didn’t know I’d get. And obviously, when dreams are coming true, you gotta look sharp.

From left, Jonah looks dapper in a new suit for the high school prom, while his mom sends him off with a kiss. (Courtesy of Patrice Williams)

As I helped him get ready — because even amid a dream-come-true, there were still tight dress shirt button holes and the reality of EB — I looked into his eyes, now a good inch and a half above mine, and teared up. He laughed at me.

But I don’t even care. Because until you’re a parent, you don’t understand how your heart can come and go, ebb and flow, with the ups and downs of your child’s. Because even though prom might just be a silly dance in the “whole scheme of things,” it’s another one of those rites of passage that I never allowed myself to imagine or envision for him.

Jonah is living his best life while hanging out with friends at the high school prom. (Courtesy of Patrice Williams)

I led a work training session a couple months ago — on Jonah’s 17th birthday, as a matter of fact — on a Sanctuary Model tool called S.E.L.F. This is a model for processing change or loss, where each letter is part of an acronym. The tool guides you through the process of change by examining and discussing aspects of “safety,” “emotion,” “loss,” and “future.” My co-trainer and I were explaining and giving examples of each component, and “F” fell to me. On the “future” slide, one of the quotes was, “Dare to dream!”

I used Jonah as an example. “As most of you know,” I said, “my son Jonah lives with a very rare disorder. We were told there was an 83% chance he wouldn’t make it to his first birthday. And he turns 17 today, actually.”

(Insert the whole room applauding and me getting a bit choked up here.)

“When he was little,” I continued, “I was so afraid to let myself hope. I told myself to take it one day at a time, that tomorrow had enough worries of its own. I had to take things as they came so that I wouldn’t spiral into all of the ‘what-if’s’ I was so afraid to think about. What if he died? What if there was never a cure? What if he couldn’t go to school? What if everyone bullied him? What if he couldn’t make friends? What if our whole lives from here forward were really, really hard? What if, what if, what if?”

“But here’s the thing,” I told them. “Taking one day at a time can be necessary, but sometimes that kind of mentality and living in fear of the ‘what-if’ makes you forget to dream. And when you process change or work through the loss of how something was supposed to be, you can’t forget to dream about a hopeful future, even if that future may look different than what you originally envisioned. The ‘future’ piece of the model orients you toward a future where dreams might just come true and invites you to imagine what could be.”

(It probably wasn’t quite that poetically stated in the moment. And there was definitely more snot.)

These teen years are tough, y’all. Yes, they’re hard because Jonah still lives with EB, still has daily struggles, and may never get the cure he needs. (And also, because teenagers are weird. Why all the irrational angst?!) But they’re hard, too, in an unexpected way. Because these are moments I never allowed myself to dream, with so many yet to come. Dreaming requires a growth mindset and a perspective shift, and, practically speaking, takes a lot of mental and physical energy.

But if we have to do the hard work of dreaming, I can’t think of a better cause than Jonah’s future.

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.