Here come the yellow school bus and my feelings of self-doubt
Did I do enough to make summer special for my daughter with FA?
Welp, it’s happened again. Summer has wound down and the gears of school have started to wind up. I can feel it pulling us into a new schedule that doesn’t necessarily include bowls of melting ice cream and homemade lemonade, half of which is in ice-filled glasses while the other half is splashed on the counter.
My 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA) has made me cherish our time together in a way I didn’t before. With the slow mornings and the sleeping in, summer is a special time. There is a contentment I cannot put into words that comes from watching my kids swim with friends while I work poolside.
Of course, my denial doesn’t change the reality that school is here whether I’m ready or not.
Like most parents, I struggle with self-doubt, wondering if I’ve done enough. Summertime makes this thought bubble up until it is all-consuming. I act sometimes as if there’s a big checklist that exists somewhere and if I hit the correct number of items, I have parented successfully.
Did we go swimming an adequate number of times to cover the cost of the pass? Did the trips we took allow us to create meaningful memories that will carry us through the hard times? Did we do enough while Amelia’s mobility isn’t 100% governed by a wheelchair? Did I keep the number of regrets at a minimum and the fun level at a maximum? Did I orchestrate a perfect summer?
I have a secret. The answer will sometimes be no — not for lack of trying, but because there are limits to what we can do.
A balancing act
Like most caregivers, I am trying to balance too much, especially when dealing with FA. Too many systems, too many appointments — it’s too much. In fact, I am juggling so many roles that some things are going to be dropped. What’s essential is that I choose what I drop based on its value to my family and me. In that intentional act, I take away some of the control FA has over our lives, and that checklist becomes a list of things I value.
Amelia had one big ask this year: to go to the beach. She wanted this because many years ago, we took a big family vacation and built sandcastles. What she remembers is that our family was together, building something and having fun.
As I think back on our summer — the smell of chlorine from the pool or the sweet, sleeping faces of both of our children as they passed the early morning in bed — I am going to work on being grateful for the moments we shared as a family.
Many of those memories are made more real when I find various rocks, seashells, and remnants of sand in the pockets of my backpack. Not only did Amelia get to go to the beach this summer, but apparently we brought it back home with us.
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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Shelley Schalip
My heart goes out to you Beth and all the family.
The one think I constantly say is Amelia was blessed with the best parents for her.