Doing Whatever It Takes to Make the Trip

I’m avoiding packing. I have a two-page packing list with three columns per page staring up at me from my kitchen counter. I feel the printed pages mocking me as I pace the floors trying to get started. We leave for the beach in 48 hours, and I’m frozen in inactivity. Where is my motivation? Who will save me from this madness?

My husband just asked me, “Are you excited for the beach?”

“No way, man,” I replied. “Not until we’re in the car.” I can never relax until we’re in the car.

Making sure we have all the things is sometimes enough to make me want to stay home. Things are better now that I have a nurse to help, but for the first seven years of my son Jonah’s life, I dreaded packing more than I desired a vacation.

For close to two decades, my husband’s family has gathered at Ocean Isle Beach in North Carolina for “Cousin Camp,” where 15 cousins, now ranging from ages 8 to 20, along with their parents and grandparents, gather for a week of relaxation at the beach. (You can imagine just how relaxing it was when the majority of them were in the age range of 2 to 5. I don’t want to talk about it.)

We quit going after our first two trips with Jonah — who was born with epidermolysis bullosa — when he was 5 months, then 17 months old. For several years, I just couldn’t. It wasn’t only about the packing, but also how hard it was to be there. We had to pack the entire house, do full-body baths and dressing changes every day, fight to feed him out his normal environment and routine, and keep him out of the heat. We watched everyone else have easy fun while we struggled. There were late nights and early wake-ups, and it was exhausting.

Finally, when Jonah was 6, I’d had enough of staying away. I didn’t care how much it took, how hard it was, or the fact that we needed to rent a condo down the street because we required so much extra space. We were taking that trip.

And so, I packed. I packed the tube food pouches, the cans of coconut milk, the blender, the calorie powder, the frozen avocado cubes, and the flaxseed oil. I packed the syringes, the tubes, the medicines, and the extra G-tube. I spent hours pre-cutting seven days’ worth of bandages. I packed the scissors, the needles, the creams, the massage table we use for dressing changes, and all the other wound care supplies. I filled the prescriptions. I found the motivation.

And we’ve gone every year since.

The packing isn’t easy, and often, neither is the vacation. After tube-feeding, blister-treating, and sunscreening, we spend about six hours at the beach and pool, with another lunch tube-feeding in between. We trudge, hot, wet, and sandy, back to the condo around 4:30 and spend two hours doing dressing change. Daily. Then we head back to the “big house” for dinner. It’s a lot.

Preparing to do dressing change in the beach condo. (Photo by Patrice Williams)

But goodness, it’s so worth it.

We have such great memories. And they are what we hold on to. Not the work it took to make it happen. Jonah’s first full night of sleep as a baby was at the beach. When he first picked up his legs and trusted that his body would actually float, we were at the beach. Last year, he finally let me take him out beyond the violent breaking waves and got to feel the gentle roll of the calm sea. And he loved it.

After dressing change, we come back to the big house. And now the cousins spend evenings playing Capture the Flag or Murder in the Dark, or watching “The Office” reruns. It’s the best week of Jonah’s entire year, and we wouldn’t trade it for all the world.

All of the 15 cousins, minus one. (Courtesy of Patrice Williams)

It’s all worth it. The work, the stress, the packing. It’s worth every moment to see him smile and experience the love he has for his all-over-the-map cousins.

I’m telling you: Pack the bag (and the other bag and the other bag). Put a roof rack on the car. Add a hitch and a luggage carrier on the back if you need to. Take the trip. Do the work that it shouldn’t take, but does, to vacation. Come home sun-soaked, sandy, and exhausted. Need a vacation after your vacation.

We just got passports. We’re going to Mexico in the spring. It’s going to be so hard. But my boys will see clear turquoise waters, go snorkeling off the coast, tube in the resort’s lazy river, and walk in rivers through caves at Xcaret. They’ll have the time of their lives. And that is worth anything.

Pack the bags. Take the trip.

From left, Matt, Jonah, Gideon, and Patrice at the beach in 2018. (Courtesy of Patrice Williams)

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Note: Epidermolysis Bullosa Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.