Our journey began long before my son, Hussein, was born. Due to a family history of SMA, my husband underwent genetic testing to be sure he was not a carrier. We received news that he was clear, and based on that reassurance, I was not tested. We believed the…
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Unintentionally, last year, most of my immediate family bought me Christmas gifts with the same theme. My brother, Gabriel, got me a handmade blue-and-white scarf from China. Mom got me a sheer-ish white shawl. My stepdad got me a red knitted cardigan. See what they’re all aiming for yet? Together,…
On a recent Saturday morning, the dryer wouldn’t turn on. The washer held a big load of washed towels. As our recently adopted dog, Ellie, was still in unexpected heat, laundry duty was steady. I couldn’t summon the repairman until Monday. Later that morning, the ceiling fan in the…
There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2, I know I have a few visible, physical indicators of…
The Apple TV series “Shrinking” features an ensemble of messy characters. Lead protagonist Jimmy (played by Jason Segel) is a widower who struggles to care for his teenage daughter, Alice (Lukita Maxwell). As a therapist, he likes helping others, but he has a hard time taking his own…
My parents were the first to notice that I had some art talent. Spinal muscular atrophy (SMA) wasn’t well understood when I was a child, and in an era before iPads, cellphones, and travel games, they used to let me entertain myself by doodling on the paper sheets on…
I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…
For a video games journalist, I haven’t played many video games recently. Mostly, the absence of gaming in my life isn’t my fault. My laptop is almost four years old, and it’s quite determined to remind me of its age. If I were to anthropomorphize it, I would say it…
I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable question. I’m not someone who loves how-to articles or self-help books, because I…
When it comes to sleep studies, I mainly remember orange juice. Don’t ask me why. I was young then, around 8 or 9, so I have to assume the technicians were trying to bribe me or something. My last study was in 2002, so I was a little nervous when…
