To Experience the Joys of Life, There Are Things We Must Consider

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by Patrice Williams |

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Last week was our 19th annual “Cousin Camp” trip to the beach with my husband’s extended family. Thirty people attended, including 15 children ranging in age from 9 to 20 years old. It’s the favorite week of the year for our son Jonah, who has epidermolysis bullosa (EB), and his brother, Gideon.

We’re so thankful for the time spent with family, but special needs vacationing presents its own set of physical and emotional challenges. By this point, Jonah is used to the daily baths and bandage changes that go along with beach and pool time. But there are a hundred other things that he has to deal with that “normal” children don’t.

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No child likes having sunscreen applied. It’s even more challenging with EB. We can’t use the spray-on kind because most types are filled with toxic substances that shouldn’t really be applied to any skin, let alone skin with open wounds. On top of that, any spray that hits Jonah’s open wounds is painful.

With the rub-on kind, the application process is laborious, and the coverage is spotty at best. Plus, we must avoid causing friction to his skin. Reapplying it with the addition of gritty sand makes it even worse.

living with epidermolysis bullosa | Epidermolysis Bullosa News | Jonah is flanked by two older male cousins while standing in the ocean's shallow waters. All three are shirtless and wearing swimming trunks.

From left, cousins Nathaniel, Jonah, and Grant enjoy beach time during an annual family vacation last week. (Courtesy of Patrice Williams)

Beach games and ocean play

Jonah was able to play whiffle ball, but Kan Jam, a disc-toss game, and cornhole, a bag-toss game, hurt his hands. Even throwing a Frisbee hurt. Between that, the burn of the saltwater, and the pull of the ocean’s currents, he was often bored on the beach. (If only he were a reader!)

The ability to go indoors

Jonah can’t be without bandages, so as soon as he hits the pool, his foamlike bandages soak up the water like a sponge. When the other kids need to go into the house, they can quickly towel off and head in. Jonah can’t. He either has to ring out his legs — which is painful because of the wounds — and sit in the sun for 20 minutes to dry out, or he’ll track water all over the floor and we’ll have to follow behind him with a towel.

Lunch, regardless of the weather, must always be served on the deck outside.

For two days during our trip, the forecast called for intermittent rain. It wasn’t worth it for Jonah to go outdoors for an hour, only to be hindered by rain. Everyone else could dry off and go back and forth, but Jonah would’ve had to stay outdoors because he’d never be dry enough to sit on the indoor furniture. So for those two days, he didn’t go outside at all.

Beach walks

Each night, all of the cousins went on a beach walk that lasted at least 30 minutes. Jonah’s feet could only endure two nights of this out of seven. Plus, while everyone else walked barefoot, Jonah had to walk in tennis shoes because his feet were bandaged.

These are not complaints. Jonah loves “Cousin Camp.” And although there were emotional times when he felt left out or that his condition makes life pretty stinkin’ unfair, he would still say it’s worth it.

One day, the currents were calm enough, and his wounds closed enough, for him to spend time in the ocean. He loved the pool. He loved the nights he was able to walk. He enjoyed playing games indoors after dressing changes. On one particularly cool day, he went with the group to play putt-putt. The food was delicious, and he didn’t have any mouth wounds to prevent him from enjoying it. There was even dessert after every meal. (What? You didn’t know breakfast dessert is a thing?!)

living with epidermolysis bullosa | Epidermolysis Bullosa News |

Jonah, second from left, joins all of his cousins on the beach for the family’s annual “Cousin Camp.” (Photo by Patrice Williams)

But there were also things to consider. There are always things to consider. And it’s unfair.

There are so many reminders that EB is unfair. We try to put on brave faces and maintain happy attitudes, but sometimes the injustice of it all smacks you in the face, right along with the sandy air and the salty sea spray.

For several years when Jonah was young, we didn’t go on the trip. I let the anger over this unfairness stop us from trying. I regret each of those years and the memories he missed out on.

Now we’re of the opinion that we should always do what we can to take the trip. There are just too many amazing moments we’ll miss out on if we don’t.

Our advice is to consider all the things. Make the adjustments. Overcome the emotional moments. And beach it up.

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.


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