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.
Nothing feels normal these days, but I did receive some SMA My Way proofs the other day, including a video I recorded and some of the articles I’ve written. It was a much-needed reminder of the past, or the future, or a time with no social distancing or flattening the curve. I’m settling in for the long haul, but it’s nice to know that certain aspects of our lives are still proceeding as planned.
My mom is working from home, and we’ve officially stopped having PCAs come, so life is just a procession of question marks right now. But every night my dad and I settle in to watch some TV. Last night we even made some chocolate chip cookies. Not everything is terrible!
What aspects of your lives are proceeding as planned? Does it help to have a daily grind to fall back on?
Like you, I’ve suspended PCA services for the time being. My dad also got special permission to work from home because of my situation.
I’ve been basically quarantining myself since Christmas, so not that much has changed over here. Granted before covid, I was more lenient. I had friends over, went to friends’ houses, and snuck out a couple of times. Now I’m hunkered down. All my friends are essential workers, too. It’s definitely a little more lonely than normal.
If anything, I’m using this opportunity to rest and go at a slower pace. I tend to overwork myself because I want to do #allthethings, so this change is oddly nice. Even so, I’m still an anxious mess. But at least I have more time to sleep on it??? Haha
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