This year’s FARA symposium showcases the power of community
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…
Recalibrating — Elizabeth Hamilton
Ohio native Elizabeth Hamilton felt her world flip when her younger daughter’s health unexpectedly declined. It took six hospitals in five different cities and three states to obtain the diagnosis of Friedreich’s ataxia in 2020. A licensed social worker, Elizabeth believes that relationships are a healing force, and most problems can be solved if you have the right tools and the right people. Life takes unexpected turns, so we must take a moment to reexamine where we are and recalibrate.
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The power of being present on this journey with FA
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…
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How to foster a mutually beneficial patient-provider relationship
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…
Providing tools to help my daughter self-regulate on our FA journey
“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…
Attending to my needs amid the stress of a medical conversation
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…
An FA caregiver answers the query, ‘How can I ground myself?’
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,…
What mermaid tails and hot skillets have taught me
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…
Answering a typical parenting question inspires self-reflection
“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…
How I’m managing our reluctant return to school
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…
How a free app helped to improve my mindfulness, well-being
While the research on the benefits of mindfulness is strong, my ability to engage in the practice is weak. I’ve discussed the positive outcomes of being present as a professional and then, in my…
How applying for enrichment opportunities benefits our family
Unknowingly, I spent most of my life preparing to be the mother of a child with Friedreich’s ataxia (FA). Former life lessons show up again in the form of old friends, gentle reminders,…
