Recalibrating - a Column by Elizabeth Hamilton

As I heard the words come out of my mouth, I knew I sounded crazy. Yet there I was, pitching the idea to my husband: I wanted us to embark on a 16-hour journey to a place so remote that there’d be no running water or electricity. And we were…

“Yeah, that was not me. It was you.” I finally said it out loud after all these years. I was not the first person to recognize that our daughter Amelia, then 4, was experiencing symptoms of Friedreich’s ataxia (FA); it was my husband. He noticed things that I, despite…

Oh, those lazy days of summer are here. Unless I’m your mom and you have Friedreich’s ataxia (FA). In that case, it’s game on. Years ago, I noticed a yearly pattern with our daughter Amelia, who’s now 13. Long before she was diagnosed with FA at age 8,…

When our daughter Amelia, 13, was diagnosed with Friedreich’s ataxia (FA) five years ago, I started doing the math. Like other parents, we’d been told that most people diagnosed with FA will need a wheelchair within 10 years after symptoms appear. This, of course, depends on the speed…

As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing up for a life of service, first as a volunteer and then as a social worker.

I both heard and felt the rumbling noise as the elevator jerked to a halt and I was plunged into darkness. Immediately I knew my error and was kicking myself. We were in the middle of a huge storm, and I’d known that a power outage was possible. Yet I…

I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA),…

I loved pop-up books as a child. The pieces that moved — delicate structures jumping off the page — captivated me, as did finding all of the flaps with hidden pictures. So it was no surprise that when our two girls were young, I littered our house with them. These…

It’s January, and despite the gray skies overhead and the lingering chill in the air, I feel a little more motivated to tackle the mundane tasks left on my to-do list. I’m starting with a thorough check of the batteries in our smoke and carbon monoxide detectors on each level…

I was 10 years old when I heard the crack of wood on wood that sent my croquet ball flying off into a cornfield. I turned to see my grandfather’s face flash a “gotcha” grin. He’d hit my ball with his, and instead of taking two extra turns, he’d decided…