This FA Awareness Month, I’m focusing on moments of intentional joy
I'm switching things up to acknowledge that caregivers need self-care, too
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Two years ago, our family attended an event hosted by the local chapter of A Kid Again, a nonprofit dedicated to providing monthly adventures for families raising a child with a life-threatening illness. We were invited because in 2020, our youngest daughter, Amelia, then 8 years old, was diagnosed with Friedreich’s ataxia (FA). At this particular gathering, the organization offered gifts, and we were given a telescope.
As a child, I spent hours stargazing, and the prospect of using a new telescope was exciting. We placed it in the dining room near a window, where it stood in quiet anticipation of the night we would finally use it.
Three years later, it’s back in its original packaging because I’m the only one in the family who was excited about it. Occasionally, while tidying the house, my eyes will catch the corner of the box, and I’ll think: “I really need to get that out.”
Lately, I’ve realized how easily the wonder of life is eclipsed by what I call the administrative weight of chronic illness. My days often feel consumed by a relentless cycle of just getting through, which entails responding to clinical notes via patient portals, coordinating with schedulers to track down elusive referrals, and facilitating complex dialogues with insurance companies about the most recent denial.
These tasks are vital, along with the responsibility of ensuring that bills are paid, dinner is served, my job is maintained, and the laundry is at least occasionally finished. Yet, I often overlook small opportunities to engage with the world outside a clinical or parental lens. Frankly, I’m tired.
An activity that’s long overdue
May is Friedreich’s Ataxia Awareness Month, a time for elevating the public conversation about the realities of FA, including the need for more research funding. While I’ve always jumped at the opportunity to advocate for our “FAmily,” this year, I’m shifting my focus to a different kind of awareness: self-awareness about the personal toll this journey takes on caregivers.
This path often demands that we push aside the hobbies, interests, and quiet spaces that once defined us to make room for the care our children require. I will never regret the choices I’ve made to provide Amelia with the best possible support. I love being with her, she always makes me laugh, and I’m so grateful for the time we have together. However, I’m beginning to recognize that I need to intentionally cultivate joy outside of being a caregiver.
This month, my goal is to prioritize small, uncomplicated moments of joy. These don’t need to be grand gestures; they simply need to be intentional. I’m starting by finally pulling that telescope out of its box.
Our current location may not offer the most ideal conditions for stargazing, but that’s OK. I’m looking for a glimpse of something larger than our daily to-do list — a reminder that even amid the complexities of a rare diagnosis, life remains profoundly beautiful. I don’t want to miss that.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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