We’re Learning to Adjust to Our New Normal

Our family has the good fortune to spend summers at a beautiful lake in central Alabama. For the past nine years, my in-laws have had a summer home and they’ve graciously invited the entire family to gather there each weekend.

Since the lake is less than an hour from home, our children have grown up on the water. They’ve been swimming like fish since they were 3 years old. They’ve learned to water ski, water scooter, and sail boats — and they see the value in a sunset cruise.

We recently celebrated Memorial Day weekend — the unofficial kickoff to summer — at the lake. It feels different this year; Friedreich’s ataxia (FA) has changed things.

Walking up and down the steps to the dock is now a challenge for our daughter. My husband or I usually give her a piggyback ride. Hopping from the dock to the boat requires lots of helping hands and care. Diving from the diving board, previously one of her favorite pastimes, seems a little too scary and precarious because she can’t keep her balance.

While on a boat ride last weekend, she asked, “Can we go to the rope swing?” My husband and I caught eyes and he gave an almost imperceptible shake of his head. We knew that the rope swing would be another glaring example of something that she can no longer do. Climbing up a slippery bank, gripping onto a rope, swinging out over the water, and dropping 15 feet or so seems an impossible feat for a girl who can’t make it up a flight of 10 steps alone.

But she was able to do these things before her diagnosis. That’s what makes this disease so tough: the mourning of past capabilities and the realization that something else has been taken away. As a parent of a child with FA, I’m continually observing and comparing, asking myself, “Is this a new progression? Could she do this last week, last month, last year?”

It has been about nine months since we have been to the lake and about a year since our daughter received her official diagnosis of FA, so I am hyperaware of the changes that have occurred in her abilities. Visiting the lake has made her progression more apparent, and that’s a tough pill to swallow. Being around her every day, it’s hard to tell that she is gradually getting worse. But it’s difficult to ignore her decline when we see her in a situation that she hasn’t been in for a while.

So, what do we do about it? Stop going to the lake? No, we adjust. We look for easier ways for her to get around. We move her to a downstairs bedroom. We give her a ride in a golf cart from the house to the dock, and add more rails to the steps to the water and the diving board. We rally together as a family to support her and take turns holding her hand, to help her enjoy the things she once did with her new reality. After all, swimming doesn’t require balance.

Progression in FA is a guessing game. Each case is different and, unfortunately, no formula can tell you what the future holds. Some cases seem relatively mild while others have rapid progression. As parents, we want to prepare ourselves and our children for what lies ahead, but no parent can foresee the future — even when they aren’t dealing with a scary diagnosis. We’re all doing the best we can with what we have and we adjust accordingly.

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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.