Baby Jeffrey joined our family in mid-May 1997. Besides his abdominal breathing, alarming only my husband, Randy, he was perfect. Eight weeks later, my physician brother examined Jeffrey. Paul’s typically calming demeanor turned eerily somber after he found a dull-sounding lung and no reflexes. He felt confident our pediatrician would…
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“Are you ready?” My caregiving friend stands beside my bed, poised to uncover me in the morning. I utter a very unladylike groan and clutch the edge of the warm blanket that is tucked under my chin. No, I’m not ready! The days are growing shorter and colder; the sun…
Our prayers have recently been answered with the arrival of a new weekend night nurse, and it feels like the wheels of progress are finally turning on my journey with spinal muscular atrophy (SMA), hopefully in a big way. The nurse couldn’t have come at a better — or…
One of my favorite tees to wear is navy blue and says, “INSTALLING MUSCLES. PLEASE WAIT …” Underneath the text is a bright red loading bar about halfway done. It was a gift from my mother, a token of her hope that I’d one day grow stronger instead of weaker.
John Muir once wrote, “The mountains are calling, and I must go.” Every once in a while, that quote resonates in my heart. I am a Carolina girl who grew up in the foothills of the Great Smoky Mountains, along the rim of the Blue Ridge Parkway, and I somehow…
September always reminds me of the anniversaries of two incomprehensible disasters in the U.S.: 9/11 and Hurricane Helene, which devastated western North Carolina, including Ashe County, where I live. This year, though, September brought cause for celebration for people affected by spinal muscular atrophy (SMA). Earlier this month, the…
“Alexa, turn off the alarm.” “OK. Good morning, Connie. Would you like to hear an inspirational quote?” “Sure, Alexa. Go for it.” “All right. ‘There is no elevator to success. You have to take the stairs.'” “But Alexa, I’m in a wheelchair.” “I cannot help you with that.” As a…
A smiling stranger was quickly approaching us in the line to order our food, and she looked intent on talking to me. I didn’t recognize her. Had I forgotten who she was? I shouldn’t have worried. We didn’t know each other, and what followed was the normal, cringeworthy kind of…
Throughout my life, I’ve experienced a certain kind of loneliness that comes from being surrounded by people. Conversations are happening all around me, and laughter fills the room. Everyone seems to be connected to one another, but I still feel invisible. Let’s face it, though. There’s nothing invisible about living…
When I was born 31 years ago, spinal muscular atrophy (SMA) was a very different disease than it is today. There were no approved treatments. No gene therapy. No medication designed to slow its progression. For those of us born before the era of SMA treatments,…
