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 just…
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. Fortunately,…
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 the…
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 darkness…
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 “Hamilton”…
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 are…
When I say “inaccessibility,” what’s the first thing you think of? You might envision something like a set of stairs, a broken elevator, or a car that’s been carelessly parked in front of a ramp. These do create accessibility barriers for people with mobility challenges such as spinal…
Simply put, I refuse to let the wind of negativity blow me down. My faith in God empowers me to keep the light of positivity shining during and after the storms of SMA. It’s a miraculous thing when you can envision yourself on the other side of a…
Lights! Camera! Action! My family’s goings-on might make good fodder for a reality TV show. It’s been a memorable year so far, including my mother’s declining health and death in February; a collapsed ceiling and water damage two months later in what…
On the last day of this year’s Cure SMA conference, I sat on a panel called “It’s a Wonderful Life” with other adults in the community. The cheeky title is meant to reflect the notion that adults with SMA can and do have fulfilling lives. It’s a bit ironic,…