One of my biggest fears came true during a recent beach trip

Last week, my family and I were in Destin, Florida, for my 10-year-old son’s baseball tournament. We intentionally built in a substantial amount of time to play on the beach, swim, enjoy fun restaurants, fish, and relax.

His baseball team, coached by my husband, Kyle, has played together for four seasons now, so it has become a big part of our lives. We spend a lot of weekends together, as well as during practices throughout the week. We feel incredibly fortunate that we enjoy our time with them.

I’ve talked extensively about all that goes into traveling with Friedreich’s ataxia (FA), specifically at this stage of my symptom progression, where I am largely dependent on a wheelchair. It has been an adjustment, to say the least, and full of logistical learning opportunities.

This trip was no exception. I not only had to figure out the best mobility aids to bring, but also how to maximize our limited space and remain safe.

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I ended up bringing my power wheelchair, affectionately nicknamed “Robo Chair,” and my two-in-one rollator/transport wheelchair. I was pleased with my choices.

That’s not to say that the week was without its mobility frustrations. If you use wheeled mobility devices and have visited a sandy beach, I’m sure you can relate. Unless you acquire a device with extremely wide wheels specifically designed for the sand, your arsenal of mobility aids can seem lacking and insufficient.

I’m still able to walk with heavy assistance, though, and can go short distances from a boardwalk to a beach chair. If it’s a longer walk, Kyle will give me a piggyback ride.

Facing one of my biggest fears

On our last beach day, one of my biggest fears came true. Seven of our 10 baseball families were on the beach, and we had a dozen or so beach umbrellas and twice as many chairs. Kyle and another father took a handful of boys fishing at a pond about a quarter-mile from the beach while the rest of us stayed to keep an eye on the children.

We noticed some dark clouds forming over the ocean and checked the radar. It said that there was lightning 15 miles away, but it looked like the storm would remain over the ocean. Still, out of an abundance of caution, I called Kyle to let the group know that there was a storm nearby and that they should head back to help us pack up and get indoors.

Not even one minute after that call, the sky began to rain down on us. Everyone was frantically scrambling to grab their things and sprint off the beach. The rain felt like needles, intensifying the panic.

A young beach employee who had helped set up our umbrellas and chairs arrived on an all-terrain vehicle (ATV) to assist us. One of the fathers in our group, who is a fire chief, grabbed me and my daughter and put us on the ATV.

I soon realized that the young beach employee had no idea what to do with us other than to bring us to the equipment shack half a mile up the beach. But in the chaos of the storm, I had failed to grab my phone, so I had no way to communicate a rendezvous point to anyone in my party.

As my daughter and I clung to the side of the shack to shield ourselves from the hammering rain, I was gripped with terror and crushed by one recurring thought: “I am failing at my job as a parent to keep my child safe.” I had never felt so imprisoned by my disabled body and incapable of basic function. It was one of the scariest moments of my life, and all I could do was lean against the shack and wrap my towel around my daughter to protect her from the painful raindrops.

Thankfully, like our own personal Superman, my dad ran after the ATV and arrived a handful of minutes after us. He immediately wrapped us in a bear hug and called Kyle, who quickly found us. My dad carried my daughter and Kyle carried me to the truck, where we were safe.

I haven’t had enough time to process the incident to know what I should do differently the next time I find myself in a similar situation, but I do know two things: I am thankful for the people in my life, and even when things feel out of control, I trust that God is in control.

“This is my command — be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” — Joshua 1:9

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.