We’ve learned to embrace hope — and to live big, too

At a men’s basketball game last week at Wake Forest University, my son Jonah, who was born with epidermolysis bullosa (EB), stood at center court during a first-half timeout. As a crowd of more than 8,000 fans rose to their feet applauding my son, the athletic director presented him with his very own personalized Wake Forest jersey.

Over the loudspeaker, Jonah was called “the newest member of the Wake Forest men’s basketball program and lifelong Deacon fan.” The standing ovation seemed to last forever as Jonah smiled, held up his jersey, and turned to all sides of the court so everyone could see.

I, also on the court in front of 8,000 pairs of eyes, stood crying.

Jonah receives an honorary, customized Wake Forest jersey on court at last week’s Wake Forest vs. University of Florida basketball game. (Courtesy of Patrice Williams)

I’ve written about Jonah’s pairing with the Wake Forest basketball team through an amazing organization called Team Impact. Although this relationship began unofficially last year, Jonah officially signed with the team on Nov. 20 while on the coach’s radio show, with his on-court honors last week. When the Deacs are in a huddle, they yell “Family” on three, and that’s proving to be true for Jonah. This team is becoming his family, and he’s becoming part of theirs.

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When Jonah was born, I didn’t think we’d have even one year with our boy, based on what the doctors were saying and what we were seeing when we Googled this new-to-most rare disease. That first year I photographed most of his waking moments and some of his sleeping ones because I thought, “This time next year, he may not be here.”

Back then, I couldn’t even begin to imagine the days to come, as he’s now graduated eighth grade, started high school (making all A’s and B’s first quarter!), and taken driver’s ed. And I certainly wouldn’t have imagined him receiving an arena-size standing ovation.

But I do remember, as we sat for hours, days, and weeks in the hospital, glimmers of hope that came through the comments on my blog. In that holy-seeming space, we heard of 5-year-old Z, who had a severe form of EB but played on his community’s soccer team. We found out about C, who had Jonah’s type of EB and was stable and doing well at 3 years old. W, a teen boy living with EB, was happy and loved playing video games and bowling.

We also met several adults who were living with EB. One was J, a sweet woman who was a married mother of a daughter. She decorated the most beautiful cakes and ended up doing Jonah’s cake for his first birthday party, bringing it to us in North Carolina all the way from Florida.

In a comment, one of these beautiful people said, “This is not the death sentence the doctors may say it is.” We heard from, in these comments and later in real life, folks who weren’t just living with EB, but were thriving despite their struggles and pain. Some of these friends have passed away during the past 14 years. But their lust for life and their determination to live it fully stay with us and continue to give us hope.

That hope — which began in those first days, weeks, and months — was breath breathed into our lungs. That was our sustenance, along with all the prayers being sent up all over the world on Jonah’s behalf.

Life hasn’t been easy. I’m honest here about our struggles — the physical pain, the seemingly endless days, the mounds of bandages, the exhaustion, the mental health battles, and the emotional struggles. But we have plenty of hope, too.

Sometimes it may come in the comments on a blog or social media post. Sometimes it comes from the love of a basketball team or an arena full of people. Whatever its source, whether it’s from one person or 8,000, it reminds us on the hard days to never give up. To keep going. To live big. And to dream even bigger.

Click to see some photos of Jonah’s signing day and jersey presentation.

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.