Three months ago, my husband, Randy, and I adopted Ellie, a mama dog who had been at the rescue for four months. She arrived with six puppies, tending to another litter after hers were adopted. “Tending” might be a stretch. When we saw Ellie, her interim miniature charges…
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Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving is a strange mix of the deeply practical and the deeply personal — it’s as much…
Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease. Since January, a new day nurse has been doing her best to provide these things for me. Her excellent care helps to protect…
I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills. So, when my friend told me as we rode in the car one day that my balance was really…
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…
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…
