Recalibrating - a Column by Elizabeth Hamilton

The smooth, yellow rivets on the school bus caught my eye as it pulled up to pick up my 11-year-old daughter, Amelia. How often had I stared at them and not seen them? Then I noticed the grinning face of a young child waving at me through a window of…

“It’s not accessible enough.” That thought passes through my mind regularly as I look at the world. Not because of my younger daughter, Amelia, who has Friedreich’s ataxia (FA), but because of my mother. I’ve never fully understood my mother’s disability, and neither have many of the medical…

“Nope, not the same.” I’ve been saying that a lot recently. It might be my age. But it could be that I’m tired of the metaphorical yardstick we all seem to use, drawing comparisons between life experiences. Either way, I’ve been speaking and owning more of my truth about parenting…

I’m going to own it: I started 2024 with great ambition to work out more — followed by a fantastic lack of follow-through. My goal was to run a 5K race in the summer. I bought new shoes and started training, but after a few weeks, I struggled to find…

My 11-year-old daughter, Amelia, has Friedreich’s ataxia (FA), and the impact it’s had on her body and our lives has its own gravitational pull. As is the case for most people managing a chronic disease in their family, FA is always present, even when it’s not the conversational centerpiece.

It started as a simple question on our car ride home. “If you had a time machine, where in time would you visit and why?” The answers included typical kid responses — dinosaurs were mentioned — but my 11-year-old daughter Amelia’s quick statement made me catch my breath. She…

The rare disease community is full of unknowns. Due to the lack of research for many conditions, we often face uncertain outcomes or futures. Friedreich’s ataxia (FA) is no different, full of various symptomatic possibilities as it affects people in unique ways. As I talk and compare…

Though I love to travel, I sometimes struggle with maps. I often need clear clues and landmarks to prevent my brain from going to mush. I benefit from talking through the directions with a traveling companion. I stare at the “You are here” diagrams found at various destinations and need…

What do my email inbox and toothpaste have in common? They both have started to wear me out. I always prided myself on my tenacity and work ethic. I knew how to hustle, get things done, organize, streamline, and then reassess to do it better next time. Then Friedreich’s…

I saw the smile on the face before me tighten as the words from my mouth registered. I needed to duck out of the gathering early to go home and care for my 11-year-old daughter, Amelia, who has Friedreich’s ataxia (FA). My family was having an “FA is getting…