Columns

When you have school-age kids, summer can be quite an adventure. Establishing sustainable and achievable routines that will serve me and my Friedreich’s ataxia (FA) is a priority when summer arrives to my home each year. Since we no longer have homework or alarm clocks to mind for a…

For most of my life with Friedreich’s ataxia (FA), hope felt distant. When I was diagnosed back in 1994, information about this weirdly named disease was difficult to find. The idea of treatment existed mostly in the language of “someday,” and even that felt optimistic. Many of us in…

I spent most of last week providing the state with documentation of two things I already live with every day: my disability and my need for assistance. I am disabled because I have Friedreich’s ataxia (FA). I was doing it for a state program that offers loans with…

A few years ago, I heard some advice about the power of perspective. It was framed as parenting advice, but it translates so well to nearly every life-planning situation. Julie Richard, founder of the Fearless Mom ministry, explained that the “most common question I get is, ‘I don’t want…

I recently finished the book “The Midnight Train” by Matt Haig, and one line at the end stayed with me. The protagonist, speaking to a younger version of himself, urges him to make his wife happy. My immediate response was, “No, no, you can’t make other people happy.” My reaction…

Every two years, I have to recertify myself as a licensed social worker. This process involves completing a significant number of continuing education units, commonly called CEUs. The one area of focus where I always struggle to find enough fresh, available training is ethics. Despite the lack of abundant coursework,…

As I get further into my journey with Friedreich’s ataxia (FA), I realize how important smiling is. When I smile, it not only conveys to those around me that I am at least fine, if not better, but it also tells my brain the same. I get a lot…

“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought,…

Living with Friedreich’s ataxia (FA) means I’ve learned to expect the unexpected. Sometimes when everything seems lined up just right, something completely out of my control will change the script. This week, that something was a spider bite. It started small, a mark on my arm I noticed when…

I am entering the joyful, frenetic, and sometimes frustrating fundraising season for my Friedreich’s ataxia (FA) patient organization, the Friedreich’s Ataxia Research Alliance (FARA). Every year, I go into it with big numbers in my head about how much money I am going to bring in. Deep down,…

My husband, Dave, came home the other day to me screaming cuss words in the bathroom. This time, I was yelling at my bladder, which was threatening to explode before I could get to the toilet. Dave strode past the bathroom without greeting me, as he usually does. These very…

Two years ago, our family attended an event hosted by the local chapter of A Kid Again, a nonprofit dedicated to providing monthly adventures for families raising a child with a life-threatening illness. We were invited because in 2020, our youngest daughter, Amelia, then 8 years old, was diagnosed…