I’m grateful that my son with EB is becoming more independent

Independence. It’s a concept we think about a lot this time of year. Together as a nation, we observe Juneteenth and the Fourth of July. And in the “land of the free,” we celebrate summer with beach trips, cookouts, watermelon, pool parties, fireworks, parades, outdoor concerts, and baseball games under the lights.

Our family just returned from our 20th year of Cousin Camp, our annual beach trip with my husband’s extended family. Jonah, my son with junctional epidermolysis bullosa (EB), and his brother, Gideon, consider it their favorite week of the year. It’s seven glorious days of beach fun, pool swimming, amazing food, dessert after every meal (What? You’ve never heard of breakfast dessert?), and all kinds of games and general shenanigans among the 17 cousins — not to mention their parents and grandparents.

With all of the tomfoolery and unbridled joy that come with Cousin Camp, it’s easy to be grateful for family, fun, and the freedom to celebrate. But I was even more thankful this year as I watched Jonah. I felt so grateful to see him becoming more independent.

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How far we’ve come

When you’re told at your child’s birth that he has only a 15%-20% chance of making it to his first birthday, you don’t spend much time envisioning the future. Every day you’re just barely making it, determined to do what needs to be done to ensure survival for that day — one wound at a time, one chore at a time, one solution at a time.

You don’t have the luxury of thinking 15 years into the future. You don’t imagine that he’ll be one of a hoard of 17 cousins getting to enjoy a sweet summer week at the beach.

Of course, because of his EB, he has limitations. He can’t fight the waves and boogie board like his brother. He has to be tube-fed to supplement what he can eat by mouth. With the sand, salt, and heat, he endures two to three hours a day of wound care and bandage changing. He’s not going to be the one belly flopping into the deep end of the pool. Nothing is without its complications.

But he gets to experience so much — far more than we ever could’ve imagined.

Jonah, far right, at our family’s annual Cousin Camp in June. (Courtesy of Patrice Williams)

This year, on a gentle ocean day, Jonah walked in with me until the water was about waist-high, and he experienced the waves. This year he put on his goggles and swam the entire length of the pool. This year he laughed and ate around the table at almost every meal, enjoying the same food as everyone else. (That’s definitely more than I can say for Gideon, who subsisted on his regular diet of hot dogs, bread, and Goldfish.)

This whole last year has been something to behold. Jonah conquered his first year of high school, including transitioning from a tiny private school to a massive public school, like a champ. He came out of the school year with new friendships, teachers whose lives he’d affected, and all A’s and B’s. He’s just gotten his driver’s permit and is doing an amazing job mastering the roads. He works part time on the cash register at my friend’s coffee shop. And he swam across the entire pool at Cousin Camp, for goodness’ sake!

I cannot with this kid. I. Just. Cannot.

I’m so thankful for the independence he does have. It’s something he fights for every day.

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.