My son, Brooks, turns 11 this week. Birthdays tend to make me nostalgic, especially my children’s. As the day approaches, I reflect on the passing of time and the coming and going of phases. One of the most memorable phases of my parenting journey coincided with one of Brooks’…
My Darling Disability - a Column by Kendall Harvey
Here in the United States, fall is back-to-school season — something I’m very aware of as the mom of two elementary-age children. This year, the logistics of this season have looked different for my family and me, thanks to our community. Because my balance has been deteriorating due to…
Last in a series. Read part one. After a traumatic whirlwind of a day, a sleepless night, and surgery to repair my broken hip, I woke up in the postoperative room. That’s always disorienting because you have no clue how much time has passed, how the surgery went, what…
First in a series. On Sept. 6, 2025, my worst fear happened. It felt inevitable. I am 100% dependent on mobility aids due to poor balance and coordination with Friedreich’s ataxia (FA). Around the house, I use a rollator walker, but when I’m out and about, I…
When I was 25 years old, on Aug. 19, 2013, my life forever changed. Together with my parents and husband, I got the answer we’d long sought about why my balance was progressively, noticeably, and inexplicably getting worse, despite being young, active, and otherwise healthy. A neurologist provided a…
Mid-August is generally recognized as back-to-school time for those with school-age children or who work in education. Our television programs are flooded with commercials for the latest and greatest in children’s fashion trends and the new must-have school supplies; our inboxes are full of promotions and sales; and there’s a…
Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life. My participation…
I’m 100% dependent on mobility aids due to my current stage of Friedreich’s ataxia (FA) progression. Given that, there’s never been a shortage of reactions by others to my various walkers and wheelchairs. In my personal experience, most toddler boys are fascinated by anything with wheels, so I’ve…
Being able to recognize your needs is a big sign of maturity. As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when something is “off” in their body. The Gottman Institute explains that anger is a secondary…
I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me —…
Recent Posts
- Finding meaning amid the darkness within
- New gene therapy may correct nerve and heart problems in FA: Study
- Redefining independence when faced with Friedreich’s ataxia progression
- Wearable sensors accurately detect FA in walking test, study shows
- I can honor my heritage by bravely managing my FA symptoms