My daughter Amelia, age 12, almost missed being diagnosed with Friedreich’s ataxia (FA) because of me. I think about that sometimes when I need reassurance that I’ll put Amelia’s needs before mine while navigating her medical care. It was the summer of 2020, and I was sitting with…
I’ve heard and read so much about the topic of fear, yet I still wrestle every day with my own fears related to Friedreich’s ataxia (FA). I fear for both my present and my future. I’m afraid of falling. I’m scared I’ll be injured. I fear being judged,…
My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not curable, disorder in which one or more of the fingers is permanently contracted. People with DC…
Summer is here! In our home, that means fun things like trips to the pool and sleeping in. It also requires us to constantly be careful about the temperature in our house and keep an eye out so that our daughter Amelia doesn’t overheat. Even before she was diagnosed…
Like many Americans, I recently got caught up in the Netflix docuseries “America’s Sweethearts: Dallas Cowboys Cheerleaders.” I love it for several reasons, but mostly because I’m from Texas and have a cheerleading background. Before Friedreich’s ataxia (FA) forever changed my life when I was 25, in…
As our parents know, those of us with Friedreich’s ataxia (FA) persevere through all of the challenges life throws our way — and there are many. I’m proud to belong to a group of such scrappy and fierce people, even though none of us would’ve chosen to live this…
I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to replace it before it gets to that point. If you want to save for yourself or…
From the moment I moved out of my childhood home, traveling became a passion of mine. It wasn’t just about seeing new places or tasting unique cuisine. (Well, maybe food had a little to do with it.) It was mostly about seeing different ways of living and meeting new people.
I’ve noticed that one-liner advice tends to stick with me, such as “Treat others how you want to be treated” or “If you don’t have anything nice to say, don’t say anything at all.” I’m sure I’m not alone in this. Since I’ve become a parent, I frequently catch myself…
Walking my service dog, Wendy, is fun, relaxing, and, oddly, one of the things I do daily that makes me feel independent. Yesterday, the sun was shining down on us even as we inhaled the warm, musty smell of the previous night’s rain evaporating. (I think Wendy smelled the same…
I have two children who are incredibly different. One is outgoing, and one is shy. One likes to go with the flow, and the other came into this world with strong opinions. One has no known medical concerns, and the other, Amelia, 12, has Friedreich’s ataxia (FA). I’ve parented…
I just finished reading “The Beauty of Dusk” by Frank Bruni. It is largely a memoir of his experience having a stroke that caused partial blindness in one eye. He must also contend with his other eye possibly being affected. In trying to figure out how best to…
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