I’m feeling grateful for a holiday gone right
EB can make everything difficult, so an uneventful trip is cause for celebration
Holidays and vacations always seem to highlight the little things about epidermolysis bullosa (EB) that make life different.
My son Jonah has it much better than many other children with EB. Thankfully, he doesn’t deal with dermis-level scarring and the resulting disfigurement. He rarely gets anything more than a superficial, localized infection that can be easily managed with topical ointment. He’s never had to have an esophageal dilation. And he uses a wheelchair only for vacations and field trips that require miles of walking. He’s stable, and we’re grateful.
Last week, we spent Thanksgiving with my family in Wilmington, North Carolina. My sister had just moved into her home, so we stayed at a hotel down the road. Living there can be difficult with EB, so we had to take several things into account when finding a room.
I’ve learned to book suites rather than simple hotel rooms. We need three beds for our family of four. Jonah and his brother, Gideon, can’t sleep in the same bed as most siblings can, because one of them could roll over and cause Jonah blistering. Also, Jonah’s itching and pain generally make him a restless, watch-out-or-he will-punch-you sleeper. A pull-out sleeper sofa and two beds are a must.
Suites also have a large refrigerator, which is critical for EB patients. Not only can it hold all of Jonah’s premade, tube-fed meals and medicines, but it also allows us to refreeze ice packs so they’ll be ready when we’re heading home.
Jonah eats much more slowly than the rest of us because of his weakened teeth enamel, a small bite, and active or potential mouth blistering. The fridge is good for that reason, too, because Jonah can finish his leftovers later when he doesn’t feel rushed.
Expecting the unexpected
On the morning we left for the trip, Jonah awoke with a corneal abrasion. Thankfully, it was mild, but sometimes they’re so severe that they cause him excruciating pain and leave him in complete darkness for days. This time, Jonah woke up hurting and was sitting in the bathroom with the lights off when I found him. He told me what was wrong, and in addition to hating it for him, my first thought was, “It [expletive] figures.”
Holidays and vacations with EB always start with a certain amount of anxiety because anything can go wrong at any moment and ruin the trip. Even a blister on the tongue, gums, or cheek can ruin one of the best parts of being away from home: eating. What’s a mood killer when dining at a fun restaurant or eating a delicious holiday meal? Looking over and seeing your teenager with tears in his eyes because he can’t eat while other family members around him are enjoying their meals.
Our recent trip was short, so we didn’t have to do any bandage changes while we were there, but I’ve written before about the number of bandages, creams, and other supplies we have to pack. I’d also like to add caregiver back pain to the annoyance list. An on-your-knees, low-hotel-bed bandage change is unpleasant. One star. Do not recommend.
Jonah, seated at right at the table, enjoys a Thanksgiving lunch with his extended family in Wilmington, North Carolina. (Courtesy of Patrice Williams).
Thankfully, this trip was positive. We were gone for only 48 hours, so packing and wound care were minimal, relatively speaking. Jonah mostly recovered from his abrasion, and the mouth pain was limited, which isn’t always the case. The longer the trip, the more we have to pack, and the greater the potential for pain and injury.
Of course, we were grateful for all the normal Thanksgiving things: the year that’s now behind us, the good food, the time with family, the fall weather, and a few days off work. Having a couple simple days when we know the potential for negative outcomes makes us so appreciative of a holiday gone right. We’re so, so thankful.
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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