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By the time you read this, my dad will be back where he belongs. I am, of course, joking. My dad has a life outside of his caregiving duties, as he should. But there’s some truth to the claim that, in his absence, things tend to fall apart.

As a young teenager, I went with my mom to a workshop at a Cure SMA conference about living with SMA as a woman. A room full of young ladies and their mothers spent the afternoon asking questions of the panelists and seeking to gain wisdom…

“Alyssa, I’m afraid I’m stuck between a rock and a hard place,” were words I never wanted to hear a doctor say about my health. Until, unfortunately, it became my reality a couple of months ago. For the second time in two weeks, I was lying on a hospital…

My husband, Randy, and I had been married 23 years when news of a surprise third baby, um, surprised us. Jeffrey hadn’t been planned (by us, anyway), yet we forged ahead almost sanely in anticipation of our expanding family. Our oldest child, Matthew, then 10, undoubtedly knew…

The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no secret that having a disability is a full-time occupation.

When it comes to COVID-19, I’ve been pretty darn lucky. I can count on one hand the number of people I know who haven’t gotten COVID-19 — myself among them. Somehow, miraculously, I’ve managed to avoid the plague. I could attribute my health to literal years of quarantine, but…

My vision bloomed as I blinked my contacts into their daily parking spaces atop my corneas. I looked around, gathering my wits. Then, I noticed it. It hung over my tea kettle, gleaming in the haze of dainty stovetop lights that cast an aura across the morning…

Loved your article. Thank you for sharing. It was lovely and so on point. My children have SMA Type 2. They are doing well and loved hearing your perspective.

Of all the works of art in the world, the one masterpiece with an undue influence on my writing is the Broadway production of “Hamilton.” Maybe it’s a cliche for a writer and musical nerd in her 20s to say this, but when I listened to the…

Late last month, I posted a Reel for Disability Pride Month about comparison. I’ve written previously about jealousy and the dangers of comparing yourself with others, especially when you’re living with a chronic illness like SMA. You lose perspective. You start to blame yourself for things that…