Answering a typical parenting question inspires self-reflection
Does raising a child with FA ever get easier? A mother weighs in
“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 pile of snacks my girls had left out on the picnic table, the 3-year-old had come racing over with her attentive mom keeping pace close behind. I provided reassurance when the apology came, but then the arrival of a typical question about parenting left me taking a deep breath.
This is not a new question. I’ve heard it frequently in the past few weeks from random parents with active, younger children. Parenting a child — Amelia, age 11 — with Friedreich’s ataxia (FA) makes simple questions complex, and the response starts unraveling in my head. Once again, FA puts me in an awkward place.
Not easier, just different
The final week of summer break has been like taking a big breath before diving into the deep end of fall. We have made medical rounds across states; all of Amelia’s specialists were squeezed in and then drained of their knowledge with recommendations for next steps. Information was compiled, condensed, and then shared with the appropriate parties.
I summoned Individualized Educational Program (IEP) members like King Arthur at the round table. The mission is clear: The start of school is about more than cleaning clothes and purchasing supplies. It’s about managing fatigue, accessibility of lockers, seating location in the classroom, and meaningful assignments. Our IEP team is new this year, as Amelia is starting middle school. I balance sharing information about her needs with reminding my daughter that she’s legally entitled to receive these supports. It feels as though I am engaged in an elaborate tap dance. I’m working to get through the routine in a timely fashion and remember all the steps while keeping the audience entertained.
Despite my growth as a parent, the question — “Does it ever get easier?” — still stops me in my tracks. I think back to chasing down running toddlers trying to keep them safe. Now I stand guard for a determined 11-year-old whose body often betrays her. Until we have a pediatric approved treatment, my daughter’s FA will continue to progress with time. This progression makes life increasingly complicated, demanding more time, patience, strength, and resources with each season.
The answer is no. I don’t think it gets easier. The hard parts do change, and we change with them. I provide myself with more grace now than I did when our children were younger. I work to lower my impossibly high standards for myself and others while also advocating for needs. As parents, we grow into the skin of the person our children need us to be while we raise them to be the best versions of themselves.
The journey will be painful and empowering. Through all the challenges, I remind myself and others that we’re all doing a really good job for our incredible children.
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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