A father’s perspective: Our journey to finding a treatment
When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.
I came across an old photo of me and my best friend, Amanda, recently. We must have been 7 or 8 years old. I was smiling so hard and she was leaning into me with a softer smile on her face. We had a Winnie the Pooh plush toy with us and were sitting up in a bed. It was one of our many sleepovers.
I’ve always required care 24/7, but I got really lucky with Amanda and her family. Her parents would graciously invite me and my nurse into their home where we’d have sleepovers in her living room. We’d turn that space into a makeshift bedroom where my medical equipment would sit on the coffee table and the pullout couch would be the place where Amanda and I slept. When my nurse’s shift was over, Amanda’s parents would take over for my care.
I never stayed more than a day, and my parents were always ten minutes down the road being nervous wrecks. But they knew how much sleepovers meant to create normalcy in my childhood and wanted me to have similar experiences. Amanda typically stayed at our house, but those few times I slept at hers felt like I had won the lottery.
Parents, do you let your children with SMA sleep at their friends’ houses with proper care or do you typically invite them into your home?
Adults with SMA, did you have sleepovers when you were younger? What was that experience like?
Home accessibility was probably the biggest barrier for having sleepovers at friends houses as a kid. That and being unable to get rides from my friends parents. It was tough being excluded from parties and activities for those reasons. I remember missing out on some fun things.
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