A weekend trip with my family stirred up mixed feelings

Last summer, I wrote a column about my beach vacation with my family. It was an incredible trip, but I had my doubts about future travel. With my facioscapulohumeral muscular dystrophy (FSHD) progression accelerating, I had to acknowledge that future travel might be difficult, if not impossible.

My daughter Jill is our family vacation coordinator. She typically plans a big family vacation one year, followed by a special trip for her and my wife, Wendy, the following year. Following last year’s beach trip, Wendy and Jill will travel to Iceland next month. But Jill wanted to do something with the entire family this summer, too. So she organized a mini-vacation in Lancaster, Pennsylvania, that we carried out over a recent long weekend.

We like to stay in an Airbnb when we travel as a family. It’s difficult to find a totally accessible one, but Jill found an option that was close. It had one step up to the porch and one at the front door. A first-floor bedroom and bathroom were accessible for me once I made it inside.

I recently purchased a cane with a 4-inch foot on the bottom. It essentially turns one large step into two smaller ones that are more manageable for me. Although it wasn’t easy or pretty, the cane enabled me to get in and out of our Airbnb.

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I hate to admit this, but these days I get anxious about accessing a bathroom when we’re away from home, especially when it’s just Wendy and me. Lancaster is a four-hour drive from our home in Pittsburgh, so I knew I’d need a pit stop. Accessible family restrooms can be hard to find, but the plazas on the Pennsylvania Turnpike have them, so Wendy was able to assist me without having to ask plaza personnel to shut down a single-sex restroom.

Sadly, I can’t say the same thing about the children’s play space or the amusement park we visited. The play space didn’t have a family restroom, so we used the accessible stall in the ladies’ room. The amusement park had family restrooms, but they weren’t accessible for wheelchair users. Fortunately, my son, Ryan, was there to assist me. The bathrooms didn’t comply with the Americans with Disabilities Act, but we made them work.

How the weekend unfolded

Lancaster is known as Pennsylvania Dutch country, with a large Amish population. On Friday morning, Wendy and I met Jill at an Amish farmers market, where we bought some baked goods, and then we met Ryan’s family at the children’s play space for an afternoon of fun. After a few hours of listening to the kids enjoy lots of activities, we headed to our Airbnb and got settled in, then had a spectacular Amish smorgasbord supper. At that point, my daughter Nicole and her family joined us, and my grandkids, Iva, Julia, and Theo, enjoyed some playtime before bed.

Our Saturday amusement park adventure began at 10 a.m., when the park opened, and finished at 6 p.m., when it closed. I was totally out of gas by 3 p.m., but the kids weren’t, so I powered through and enjoyed a few more hours listening to their laughter.

We ended the day with a meal at a local restaurant and some additional playtime for the kids back at the Airbnb.

Ryan and his family left early Sunday morning to return to Pittsburgh, where they had some commitments that afternoon. Nicole and her family helped Wendy and Jill take care of the linens, towels, dishes, etc. before checking out of the Airbnb by 11 a.m.

Nicole and her family headed back to Pittsburgh, while Wendy, Jill, and I decided to visit a nearby clock museum. We enjoyed a late lunch before Wendy and I headed home. Jill stayed in Lancaster for some upcoming work appointments.

Our return trip was uneventful. We stopped at a convenience store, where I was pleased to find an accessible family restroom that I took advantage of.

As we exited the Pennsylvania Turnpike and made our way through the familiar streets of Pittsburgh, I grew emotional. The weekend with the kids was a gift and a blessing, but somehow, it seemed like I was closing a chapter of my life. With my FSHD progressing, I’m just not sure I’ll be up to any more family adventures.

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.