How I’m redefining my priorities in parenting a child with FA

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 to launch my ball. For those unfamiliar with the game, the play was a bit spiteful. He moved on with his next stroke while I angrily contemplated how to get my ball back on the lawn.

I’ve always had a competitive streak. When people ask me where it comes from, I usually tell them this story. I have a strong drive to be successful in all that I do, a trait I probably inherited.

Though it’s served me well in many ways, sometimes it’s a bad fit for me now that we’re dealing with my daughter Amelia, now 12, and her diagnosis of Friedreich’s ataxia (FA). Because of this degenerative disease, I’ve had to radically redefine what success means as a parent, caregiver, and advocate. That’s not only to protect Amelia’s mental health, but also my own.

Sometimes I allow my mind to wander back to the time before Amelia’s FA symptoms showed up. Back then, I didn’t worry about slowing down disease progression or having a calendar full of clinical trial timelines and an email inbox cluttered with FA-focused publications.

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During this “before time,” I was focused on being a successful professional. My approach to parenting was very different. I paid a lot of attention to my young children’s early education so that they’d be ahead in school. I worried about how they were making friends and what enrichment activities were crammed into their day.

For me, success as a parent was more about hitting the high notes of developing young people and less about celebrating each moment or being fully present. That wasn’t necessarily wrong, but looking back, I think I felt a bit hollow.

Our lives are different now

In my life after Amelia’s diagnosis, I’ve sometimes obsessed over her survival. I think about advocacy a lot. I worry that I’m not doing enough to fight for her in hospital rooms and on the national scene, where I advocate for more pediatric clinical trials.

When I make sure she has proper nutrition and physical activities, keep her comfortable, and line up the right interventions, I feel like I’m successfully parenting a child with FA. But I still feel a bit off, as advocacy, while crucial, doesn’t define the deeper part of me as a mom. I don’t want my life or Amelia’s to be reduced to a checklist.

Recently, I was helping Amelia with her schoolwork. It was math, a subject I’ve always struggled with. We got through the instructional videos and were working on the problems. In that moment, I realized that I had a choice to redefine what I call success, the thing I’m striving for.

Instead of checking off a task, I decided to be more present. That involved being more patient while explaining things and paying attention to how she processed the information, rather than worrying about whether she had the right answer. I noticed her brown eyes as she scanned the screen and how she tucks her hair behind her ear. I took a deep breath and appreciated all the beauty and struggle in this singular moment.

I think that’s how I want to start viewing my success as a mom: as someone who is fully present with both of my children.

This holiday season, I want to make sure we still have all of the camera-worthy moments, but I also want to make sure I’m living in them and not just through them. I’m so grateful for my grandfather for hitting that croquet ball into a cornfield, and by doing so, teaching me to find my own way out.

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.