“Where are the cartoons?” I jokingly asked my mom while “Sherri,” the daytime talk show, played on a television above me. She chuckled as I scanned the waiting room, taking it all in. There are moments in life when gratitude and fear coexist in the most complicated and overwhelming of…
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The spring of 1997 arrived with a bang. Initially stunned at the revelation of an unplanned pregnancy, my husband, Randy, and I warmed up quickly to the baby idea and considered ourselves as prepared as possible. Our son, Matthew, who was 10 years old, knew enough about the birds and…
In my life with SMA, my favorite thing to talk and write about is my caregiver community. They are truly exceptional and amazing people who faithfully show up, step up when my needs change, and courageously do hard and messy things to help me live well. I am…
My mother tried persuading me to get a hospital bed at home for years. “Your uncle can help us source one that the pediatric hospital doesn’t want,” she said at one point. “Our neighbor doesn’t need hers anymore. She offered it to us. Do you want it?” Mom asked…
I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would have other children with SMA. Research shows that there is a 25%…
“Spinal muscular atrophy golf tournament,” I spoke into my voice-to-text software. It was late at night, and I was physically drained. As a result, I knew my speech wouldn’t be very articulate. Nevertheless, I persisted in trying to accomplish some of my tasks for my nonprofit’s upcoming charity golf…
By the time I was 19, I believed I had escaped my reproductive cycle. In fact, I had developed a superiority complex about it. While my friends complained about cramps and cravings, I laughed in their faces. It’s not like I was reading studies on young women with…
A sick feeling sank like a rock in my stomach. My wheelchair would not fit in the airplane cargo hold, the airline employee told me. My only options were to refund our tickets or reroute us through another airline. My caregiver and I sat there, surrounded by our carry-on bags…
Nearly anyone that knows me knows that pasta has been my lifelong favorite food. We stock a variety of shapes and flavors in the pantry so I always have different options to choose from. Among them are single serving, microwaveable mac ‘n cheese cups. A few weeks ago, I realized…
Some losses don’t give you time to prepare. The sudden passing of Eric Dane, a Hollywood icon who couldn’t escape the ugly grip of amyotrophic lateral sclerosis (ALS), is one of them. It’s the kind of news that doesn’t just make you sad. It unsettles you. It pulls…
