Living With EB Requires Some Creative Problem-solving

My husband and I knew we would have problems to contend with after our son Jonah was born with epidermolysis bullosa (EB). We’d have to think about things like wound care, bandaging, tube feeding, and weight gain. What we didn’t know was how creative we’d have to become to solve the many “little” problems of living with EB. We’ve come to call it, “settling on a plan for survival” or “Meh, good enough.”

These are things like remembering to bring a large cup wherever we went when Jonah was a baby because we knew he would vomit at least once while we were out. At the beach with extended family, we’d have to plan to get our own condo down the street instead of staying in the “big house” with all the cousins because we knew we’d need extra space for bandage changes and tube-feed prepping.

At times, we knew we’d need a wheelchair, not because Jonah can’t walk, but because if he has to walk too far, he hurts, and it steals his joy. In the summer, we knew if he wanted to go swimming, we’d have to have at least a four-hour window — two hours for swimming and two hours for the bath and bandage change that we have to requisitely follow. To beat the heat, we had to plan to bring cooling gaiters and portable fans wherever we went.

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And shoes! We knew we’d end up buying every pair of shoes until we’d find the only pair that fit over his bandaged feet and returning all the others. Or that we’d be paying more than $200 a month for supplements like Shakeology, flaxseed oil, and greek yogurt to beef up his calories in insurance-covered Real Food Blends. When we go to an event or concert, we’d get end-of-the-row seats, preferably in ADA areas, to make it easy to get out if something went wrong, and to keep him from getting hurt in the crowd.

The list goes on and on and on.

Several years ago, I realized we would have to figure out how to celebrate Halloween in a way that his feet and body could handle. When he was a baby and a toddler, it didn’t matter because he could ride in a stroller and only had to walk up to the houses. But once he outgrew the stroller and the wheelchair and became “so not cool for trick-or-treating, Mom,” we had to come up with a new plan. That plan turned out to be a “Patrice, you are a freakin’ genius” sort of plan. And it’s one both of my boys adore.

Each year, I choose eight or nine friends’ houses to visit. I connect with everybody on my list ahead of time, get their addresses, then plot the most efficient course around town. We go from house to house to house in our car and the boys never know where we’re going next or who will be behind the next door.

Jonah Williams, right, and his brother, Gideon go trick-or-treating at a family friend’s house in 2019, the year the family started the tradition of “going visiting” on Halloween. (Photo by Patrice Williams)

They love the “not knowing” of it all, and the folks we visit are over-the-top excited to see them. Often, the boys get their own personalized baggies!

As part of our Halloween rounds, we always visit the two local grandparents, of course, but we also mix it up and visit church families, old friends or neighbors, co-workers, and baseball friends. At each home, we say hello, spend a few minutes chatting and trick-or-treating, and then we grab a picture!

I love it, too, because it reminds me of the days of my grandparents’ generation when you’d “go visiting” and drop in on friends and relatives, often without notice, just to spend time together.

Brothers Jonah and Gideon Williams visit a church friend’s home during Halloween 2019. (Photo by Patrice Williams)

Many of the problems we’re forced to solve are frustrating, disheartening, and maddening. But this particular “problem” has led to such a sweet time of fellowship that we look forward to it each year. My husband, Matt, is our chauffeur and normally enjoys it, but this year Halloween fell on game five of the World Series with our beloved Atlanta Braves, and he was, “OK, but we have to be back by the first pitch at 8:09, so hurry it up already.”

It’s never a bad time to “go visiting,” but it’s even better to do it dressed up in a costume and scoring loads of candy at the same time.

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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.