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As we drove down the street, the morning jam to music paused briefly when my eldest daughter said, “Don’t forget to go Dad’s way.” I smiled, knowing full well what she meant. Dad’s way was a shorter route to her school, but my daughter was also telling me, “Please pay…

My husband, Kyle, who will turn 38 next month, has been involved in sports since the age of 5. He played baseball in college and learned numerous life lessons that have shaped him into the kind of husband, father, co-worker, coach, and volunteer he is today. To provide some background,…

I have started fundraising for my next service dog so Wendy, my current service dog, can retire. It has not been easy, but I know it’s time. Wendy is always happy to help me, mainly by picking up things I drop, and she is always spot-on in public — except…

One of my favorite podcasts had an episode titled “Quantum Refuge,” which made me think about Schrödinger’s cat. I was never a physicist, but here’s how I understand it: Schrödinger imagined a cat sealed in a box with a tiny radioactive atom. If the atom decays, poison is…

As part of the field work required for my master’s degree in social work, I worked with someone who had a traumatic brain injury, trying to help him move away from destructive behaviors. I always thought part of the problem was that he was in his late 30s and living…

If there were Olympic medals for complaining, I’d have an impressive trophy room by now. For most of my life with Friedreich’s ataxia (FA), I didn’t realize I was “training” for that, because complaining had become second nature to me. I didn’t always do it loudly; it was often…

This is the time of year when I ask my husband, Dave, what he wants for Christmas. He usually replies: “I don’t know, I haven’t thought about it.” He repeats it year after year, especially as Christmas or his birthday draws near. So, mostly, I select gifts without his guidance.

Friedreich’s ataxia (FA) shook up my life in every way imaginable. I started to notice a loss of balance and coordination in early 2013, which resulted in a five-month diagnostic journey and then a diagnosis of FA that August. It’s fair to say that in those early days,…

Each year, the daughter of one of my friends hosts an annual “Friendsgiving” event the day after Thanksgiving. I’ve never gone because I haven’t met her daughter, but my friend assures me it’s really fun. I love the idea because it reminds me how intentional people must be to build…

I imagine that many homes like ours, especially those with someone who has Friedreich’s ataxia (FA), can become quite loud. It’s common to hear requests shouted across our home, like asking for longer socks or a sweatshirt that was left on the bedroom floor. As my 13-year-old daughter Amelia’s…

For Thanksgiving break, my extended family rented a cabin in a small town in Oklahoma. It was a lovely week to unplug, unwind, play board games, laugh, go on adventures, and enjoy nature. We all agreed we must make the trip again and do it regularly. I truly loved getting…

While walking with my service dog, Wendy, I reflected on a question that’s always with me: Who am I? Even at 63, with more of my life behind me than ahead, this question still arises. I am many things: daughter, sister, wife, aunt, friend, dog mom, rare disease patient, rare…