Recalibrating - a Column by Elizabeth Hamilton

I love systems. From a professional standpoint, they fascinate me. I spent 20 years working as a social worker within a large system where I “grew up” professionally. Even when that system was frustrating, I understood it. I developed a new appreciation for the challenges of such systems as…

I have a confession: I’ve made some pretty big mistakes in my life. They were never intentional, but they were still harmful. They involved silver linings, overly positive thinking, and a perpetual need to immediately fix things. Does any of this sound familiar? Perhaps you’ve done something similar. My youngest…

When my children were young, one of my favorite moments was story time before bed. Nothing felt better than having a child under each arm with a good book in the middle. I know that the lessons from literature can be compelling, and these moments were more than just…

I love my “FAmily.” The network of incredible individuals that Friedreich’s ataxia (FA) has brought into my life since my daughter’s diagnosis has been such a blessing. I often say, “I hate this disease, but I love my people.” One such person is Jean Walsh. I met her while…

“Mom, come look at Amelia! It’s hilarix.” The gap-toothed smile of our then 6-year-old warmed my face, as did her inability to pronounce the word hilarious. I peeked around the door frame and immediately understood the complexity of what I was witnessing. Her younger sister, Amelia, then age 4, was…

As I stared at my fists gripping the steering wheel, I realized my muscles could not squeeze any harder. There was an absurdity here. I was white-knuckling my steering wheel, and my car was in park. The call that had sparked this reaction was still in progress. The medical professional…

As I raised the phone to my ear, I immediately heard crying. My friend and former co-worker was on the way to a family emergency and was looking for help. As a social worker, I balance the need to be present in feelings while also knowing that sometimes there is…

When our youngest daughter, Amelia, was 5, she hung twine throughout her bedroom. Then she arranged blankets on top of the strands to create an elaborate tent with sections for rooms. I’d never seen anything like it. It was one example among dozens over the years of how Amelia looks…

“So, does it ever get easier?” My eyes slid off the curly mop of brown hair belonging to a curious toddler and up to the questioning eyes of her mother. Pulled in by the pile of snacks my girls had left out on the picnic table, the 3-year-old had come…

As August marches onward, the memes around children returning to school abound. But the ads for back-to-school sales have triggered a new feeling in me this year, and it’s unpleasant. Once again, our 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has made normal feelings abnormal. Surrounded by other parents,…