Despite my fears, my family and I enjoyed our spring break road trip

This year, my family and I decided to take a road trip from Austin, Texas, to two national parks in New Mexico during my elementary-age children’s spring break. It involved about 20 hours of total car time.

I’ve previously discussed how my Friedreich’s ataxia (FA) affects travel, including how much logistical planning, intentionality, and gear are required. Now that about 85% of the time I spend away from home is sitting in one of four mobility aids, it’s even more laborious.

After researching the accessibility of the two national parks we planned to explore, I decided that my mobility scooter would provide the most comfort and safety on the inconsistent terrain, and I’d use my three-wheel walker at the hotels and any stops along the way.

All in all, I think my planning paid off. I felt safe and well-equipped. I was able to participate in most of the activities, aside from a trail exploration here and there.

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I have a few fears about traveling with FA, but my top two are getting injured while away from home and my family missing out on adventures because of my physical disabilities. The last thing I want is for my family to skip enriching activities or miss opportunities because I can’t participate. Their abilities should be celebrated and enjoyed.

Lately, when I’ve been asked how I’m doing FA-wise, the word that comes to mind is “prisoner.” This is such a dark thought, though, so I’ve kept it to myself. Until now.

Would FA imprison my family, too?

As I navigate the new territory that comes with transitioning to a wheelchair, I feel I’ve lost so much independence. I can’t safely get my mobility aids in and out of the car by myself anymore, so I need an able-bodied adult’s help. Luckily, I have no shortage of kind helpers around, but it feels like a devastating blow to my ego every single time I have to ask for help.

I also need my husband’s help getting in and out of the shower. My children have to help carry things. My friends have to walk my children from school to my car. In essence, I need help beyond mobility aids to do just about everything. I feel imprisoned by FA.

I worried that FA would imprison my family on this road trip, too. Fortunately, though, it didn’t. I still felt entirely dependent on mobility aids and supplemental assistance the whole trip, but my feelings didn’t negatively affect my kids’ experiences.

I got to ride the elevator 750 feet down to explore the Carlsbad Caverns on my scooter. My kids got to playfully toss snowballs at me in Cloudcroft. My husband carried me across the dunes at White Sands National Park, where he and the kids slid down 30-foot hills on the softest sand. We made a ton of memories sharing laughs, appreciating nature, and exploring new areas together.

I didn’t have any falls or incidents. My feet and legs cooperated and let me get a good night’s sleep each night. The accessible accommodations in the hotel rooms kept me safe. All in all, it was a great trip — an escape from our normal routine.

I knew that all of the problems that make me feel like a prisoner stuck in a disabled body would be waiting for me at the end of spring break, but while this action-packed road trip wasn’t a restful getaway, per se, I feel invigorated to keep pushing through my darling disability with grit and grace. Life is too beautiful of an adventure not to enjoy.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” — Galatians 6:9

Note: Friedreich’s Ataxia 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 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.