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Last weekend, I did something for the 10th time that I never imagined doing even once. I signed up Team Kendall for the annual fundraising event rideATAXIA in the hopes that I can contribute enough to tip the scales to save my life. For the 10th time, I will…

Across a little wooden bridge, with the creek underneath and the manufactured habitat surrounding and running alongside, was the home of three small, gray foxes. One of them ran with the others under the bridge, onto the quiet meadow, and through the trees, distinguishable only by its three legs. I…

Unknowingly, I spent most of my life preparing to be the mother of a child with Friedreich’s ataxia (FA). Former life lessons show up again in the form of old friends, gentle reminders, or sometimes a smack on the head telling me I need to change my thinking. When…

Scrolling through Instagram recently, I was left teary-eyed and introspective when I happened upon one particular reel. It features an oft-used voice-over of a sweet older woman talking, set to pictures and videos of precious moments with children as we hear the following: “I’ve reached the last years…

Because of my mom’s poor health, I’ve been spending more time lately talking with my family. I recently spent a few days with one of my brothers helping Mom settle back into her house after nearly eight weeks in the hospital. My brother’s kids are regular topics of our…

I have yet to find the secret to living a life where I wake up every morning rejuvenated, motivated, perfectly calibrated, and ready to tackle my day with gusto. I don’t think anyone has, but it’s especially difficult when I’m at the mercy of the wild card that is…

I’ve heard it on TV and in movies and read it all the time, a seemingly universal message to caregivers: “Remember to take care of yourself.” Although I’ve never disagreed with that advice and I’m sure I’ve said those words to others, such guidance is easy to forget or ignore…

“What do you wish to achieve in this life?” my friend Tony asked. I sat down for a moment to rest. It was a loaded question, one I hadn’t been asked in years. I had just earned my graduate degree in biblical studies, and at 29 years old, I imagined…

I’m amazed at how many lessons my daughter teaches me just by being herself. We were at the base of Sleeping Bear Dunes in Michigan, an eight-hour drive from our home in Ohio. It was hot out, and the sun’s reflection on the sand made it even hotter. Because…

When I was young and, frankly, naive, I had a lot of misconceptions about people with disabilities. I thought that the only people who used walkers were senior citizens or those recovering from leg injuries. I also thought that only people with nonfunctioning legs used wheelchairs and that they sat…

The word “enduring” has been on my mind a lot lately. I was thinking about that concept as I saw friends with Friedreich’s ataxia (FA) post on social media about the approval of Skyclarys (omaveloxolone), the first-ever treatment for our disorder. Even though it’s worth celebrating…

The weight I often feel as a parent can be crushing. The level of worry, feelings of inadequacy, sense of guilt, and overwhelming fear can easily hijack my mind. I know I’m not alone in having these feelings, and that it isn’t solely because my youngest daughter, Amelia, 11, has…