How I’m managing our reluctant return to school

The advent of Friedreich's ataxia has changed my end-of-summer mood

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by Elizabeth Hamilton |

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As August marches onward, the memes around children returning to school abound. But the ads for back-to-school sales have triggered a new feeling in me this year, and it’s unpleasant. Once again, our 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has made normal feelings abnormal.

Surrounded by other parents, I was asked how excited I was for school to start. In our case, soon the girls would be out of the house and some order would resume within the four walls of our home. I faked a smile while my eyes fought back tears. I’m not ready for our fun-filled summer to end. It’s been a positive season of firsts.

Summer has also provided a sense of emotional safety. Sleeping in was something we could easily accommodate. There were no tears about waking up and no pushback around not wanting to go to school. The arguments around being too tired to complete homework were tabled. So was the discussion around how books without pictures are boring. We could focus more on collective efforts to navigate life with FA and have some fun without the added stress of school.

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Moving into confusion and hope

Striking a balance with FA is hard. I struggle sometimes with when to push and when to comfort. When the phrase “I’m tired” is reflective of the boring homework sitting before us and when it’s genuine fatigue. Or whether the request to stay home is really a hope to avoid using a mobility device at school because being different is hard. It’s like I’m dealing with cryptic messages, and my decoder ring is often broken.

My husband and I try to tune in to the needs of our daughter Amelia and research the best ways to manage everything, as well as partner with experts and amplify support. Despite this, I sometimes feel like I’m just rolling the dice with my response. With that comes a sense of being inadequate, overwhelmed, and ill-prepared. I find myself repeatedly recalibrating my actions and my mindset.

In our journey with FA, focusing on the positives is critical. I remind myself of the peace of vacation when we dipped our toes in the cold, flowing river, the laughter of both girls while we played in the pool, the late-morning cuddles after the late-night reading sessions. All remembered, and all cherished.

As we pour through the school supply list, I breathe and remind myself of truths. Returning to school may be tough, but we’re tougher. There’ll be barriers ahead that might seem overwhelming, but with the right support, we can scale them. There’ll be challenging moments for both daughters, and our job is to coach, cheer, advocate, push, and provide a soft place to land. We’ll provide wisdom and the balance our children need. School is important, but it’s not everything. Life is lived in the now, and the now is what we make of it.

Ready or not, the yellow school bus is coming. We’ll greet it with a smile, courage, hope, and gratitude for the magical days of summer.

Beautiful girls, we can do hard things.

A young girl in denim shorts, black sunglasses, and a blue "rideATAXIA" T-shirt sits on a dock. A river, lake, or pond seems to be behind her, with low, free-form greenery around it.

Amelia sits on a dock in Thompsonville, Michigan, in July. (Photo by Elizabeth Hamilton)

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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