Recalibrating - a Column by Elizabeth Hamilton

Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital are harder than others when managing my 12-year-old daughter Amelia’s…

As I headed west down the familiar highway from Pennsylvania to Ohio, my mind spun as my eyes took in the autumn hues around me. After two amazing days at the 2024 Friedreich’s Ataxia Symposium, I welcomed the long ride home in quiet. Usually, my drives to Philadelphia…

Staring across the table, I gave a reassuring smile to the student intern who was shadowing me that day. I mouthed “it’s OK” as heavily armored police moved through the home. We’d arrived at a client’s house just moments before a search warrant was executed and, with our badges visible,…

I looked at both my hands and scoffed. The next 30 minutes were going to be interesting. I’m an incredibly right-handed person, to the point that my left hand is pretty much just along for the ride. On this morning, my underused left hand was clean while my right had…

“Because we cannot bend the space-time continuum?” The words rolled out of my mouth and landed with a thud in what was already an uncomfortable conversation. If you’d just walked in the room at that moment, you would’ve been incredibly confused as to what was happening. There was a doctor…

Welp, it’s happened again. Summer has wound down and the gears of school have started to wind up. I can feel it pulling us into a new schedule that doesn’t necessarily include bowls of melting ice cream and homemade lemonade, half of which is in ice-filled glasses while…

I have always loved children. This feeling has been woven into so much of my life and career. When I found out that we were expecting our eldest, I bought onesies and hung them up around the entrance to our home. When my husband came home, I held up one…

“My mom is kinda crazy,” my daughter Amelia said with a half giggle while talking with one of her friends. If you ask me how often that’s said, my response would be “a lot.” Though sometimes the reference is about how far I’ll go to advocate for her, I’ve…

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…

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…