Making memories on what was likely my last family vacation

My wife, Wendy, and I recently enjoyed a beach vacation in North Carolina with our family. That included our three children, Nicole, Jill, and Ryan, as well as their partners and our three grandkids, Iva, Julia, and Theo.

Hurricane Debby moved out the day we moved in, and Tropical Storm Ernesto didn’t stir up waves until we’d left town. We enjoyed perfect weather and a gentle surf that was just right for preschoolers.

Jill planned everything. She coordinated schedules and found a week that’d work for everybody. We decided to find a beachfront rental near Wendy’s sister in North Carolina. Jill found one that was accessible for me. Because of my facioscapulohumeral muscular dystrophy (FSHD), I don’t do steps very well. I also needed a property with a walk-in shower. There aren’t a lot of accessible beach homes for rent, but Jill found one that met my needs.

“Chocolate Thunder,” as the rental was named, had a ground-level entry. It was also equipped with an elevator and a walk-in shower, so we were all set.

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We spent the first week in August packing, planning menus, and making final preparations. I have an aunt who lives in the western part of North Carolina, so Wendy, Jill, and I decided to leave a day early to visit her on the way down. We left early on the morning of Aug. 8, with plans to meet Aunt Fran for dinner that evening.

We were four hours into the trip when we got a phone call from the realty company we’d used to rent the beach house. As she answered the phone, Wendy commented, “This can’t be good.” It wasn’t.

Chocolate Thunder had sustained some damage from Hurricane Debby and wasn’t available until repairs were made.

The realty agent asked what our requirements were for our beach house. We explained my accessibility needs. Jessica, the corporate social responsibility agent from Emerald Isle Realty, said she’d see what she could find.

Wendy drove on. We said some prayers that Jessica would find something, and our prayers were answered just a few minutes later. She called back to let us know that she had a beachfront property named “Livin’ the Dream” that had everything we needed. It typically rented for much more than Chocolate Thunder, but the owner had agreed to accept what we’d already paid!

The upgrade was a dream come true for us. The property was larger and much more luxurious than we could’ve afforded. The home had a pool that was perfect for young children. It had a hot tub that, sadly, wasn’t accessible for me, but everyone else enjoyed it. To top it off, the beach was no more than 50 feet from the pool, so the grandkids loved playing in the waves for a while, building sandcastles, then jumping into the pool.

Confronting my fear was worth it

For most of the week, I used the elevator and my walker to navigate to the second-floor deck. The steps off this level lead down to the pool, so I could enjoy listening to the grandkids having fun.

At other times, I sat on the fourth-floor deck while the kids painted seashells and played games. The entire family enjoyed playing lots of cards and board games after dark.

Wendy and the other adults in our crew prepared many delicious meals. The grandkids even got to be part of the kitchen crew, helping make pizza one evening.

My kids pushed me to get in the pool all week, which meant navigating down 10 steps from the deck to the pool level, then a few more steps down into the pool. There were a few steps going down from the pool level to the bottom floor of the house, so it was possible for me to get into the pool and back into the house without going up any stairs. I wanted to do it, but I was afraid, which is something new for me.

On our last full day at the beach, Jill said, “It’s now or never, Dad.” It’s always a fight to keep going with FSHD, but I decided to take the plunge. With my family supporting me, I managed to stagger down the steps to the pool level without a fall. I made it into the pool, where my grandkids greeted me with a loud cheer of “Pappap’s in the pool!”

FSHD is progressive, so this might be my last family vacation, but we made lots of great memories. “Pappap’s in the pool” might be the best one ever!

Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.