A tool to deal with parental stress when a child has FA

The weight I often feel as a parent can be crushing. The level of worry, feelings of inadequacy, sense of guilt, and overwhelming fear can easily hijack my mind. I know I’m not alone in having these feelings, and that it isn’t solely because my youngest daughter, Amelia, 11, has Friedreich’s ataxia (FA).

I believe the bar created for parents by society and reinforced by social media is much too high. Meanwhile, the supports to reach it are much too low. I want to be more than I can be. I want to act like a mother whose sole work is raising her children while shouldering a full-time job. Then FA enters the room and it is just too much.

That’s when I engage in what I call “cupping” (not to be confused with the ancient practice of using suction to ease pain).

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When I was a child, my parents taught me to cup my hands and think about all the things that were burdening me. I was then instructed to turn my hands over and visualize letting these things go. I continued this practice into adulthood but modified it to better meet my needs. After all, I am the expert of my own experiences.

I still occasionally take a moment to cup my hands. I visualize all the things that worry me, then slowly name them. Then I ask myself if they are in my hands. Can I influence or control them? If the answer is yes, I picture them in my hands. If the answer is no, I see them outside of my hands. They fade into the horizon as items that don’t belong to me. I vocalize this by saying: “That is not yours, let it go.”

Elizabeth Hamilton’s daughter Amelia, 11, cups her hands to hold grains of sand. (Photo by Elizabeth Hamilton)

The things left in my hands belong to me. These are things I have influence or power over. I ask what I would like to do with each of them. In the case of parenting a child with FA, I can choose which doctors Amelia sees, what resources we provide for managing her mobility, and how we set up our daily lives.

Sometimes relationships land in my cupped hands and I remind myself of a simple truth: I can control only me. I can establish boundaries or expectations, but at the end of the day, I can control only how I react. Despite what we want to believe, we cannot change others.

Sometimes I leave things in the “not mine” category but still put actionable steps into my hands. Frustrated about the lack of pediatric clinical trials for FA? Then see how you can help advocate for change. Worried about Amelia’s academic growth? Look over her individualized educational plan, make sure you connect with those who provide services, and see if we have any gaps.

Realistic expectations

During this process, it is crucial for me to remember that for every yes I say to one thing, I must say no to something else. There are only 24 hours in a day. The expectations I create for myself must be realistic and based on what I can do, not what I think I can do or should be able to do.

This tool became a staple at my former job. When compassionate team members hit my door frustrated or upset, they would spill out their struggles and then we would “cup them up.” It didn’t resolve the struggle, but it did remind us that we are only part of a solution to a larger barrier or concern. The practice helped us to identify areas of potential support. Remembering our limitations can be empowering.

(Graphic by Elizabeth Hamilton)

When I named this column “Recalibrating,” I pulled from my roots. I grew up around grandparents and parents who took pride in being able to build or mend the things in their lives. My grandpa would always say you can fix just about anything if you have the right tools. That advice has become a core part of who I am as a person, parent, and professional. I will continue to share my toolbox with others in the hope that it may be helpful.

The weight I carry when parenting a child with FA is challenging, and the guilt can be overwhelming. When this happens, I take a deep breath, cup my hands, offer myself grace, and whisper to the guilty feelings, “You don’t belong here.”

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.