Actionable ways to celebrate National Caregivers Month
After 15 minutes on hold, I hesitantly opted for a callback when an operator was free. Though I am sure this feature was created with the best intentions, it is a one-time pass. Meaning…
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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Staying active during the summer helps keep my daughter mobile
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…
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6 simple tips to get the most from the complex systems we rely on
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,…
Why we should sometimes turn a silver lining into a looking glass
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…
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…
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…
