Thinking outside the box is necessary in life with SMA
Navigating this condition often requires us to get creative
Years ago, I taught kindergarten at a self-contained school for students with orthopedic and other disabilities. My charges were animated, and my assistant was delightful.
At the end of my fifth year, my students were all mainstreamed to regular elementary schools, leaving me classless until days before the following year commenced. Mary, our school nurse, quietly described my new students, all of whom required skilled nursing in some capacity. On the fly, I learned how to suction, tube-feed, recognize and document seizures, and more. Several of my students were blind and/or deaf and immobile. Only one was independently ambulatory, and she couldn’t speak. One could only blink. Thinking outside the box necessarily became routine.
My mettle was tested daily, especially during a frantic dash to the emergency room with one student. When my husband, Randy, accepted a job warranting a move, I didn’t balk. I’d miss Brockman School, but after a harried year trying to keep my fragile students alive, I yearned to be just a mama.
Unbeknownst to me, in a few years I’d be a mama trying to keep my own fragile baby alive. I’d be scrambling outside the box again, putting some of those Brockman lessons to work.
Two surprises: A pregnancy and an SMA diagnosis
A pregnancy surprised Randy and me a few months after our move to the North Carolina mountains at the end of 1995. The pregnancy was uneventful, yet during a routine exam, I asked my doctor if children who couldn’t move had moved in utero. He didn’t know the answer. I didn’t know why I’d asked. I hadn’t thought about that with our other two children, Matthew and Katie, when I was surrounded by children who couldn’t move. Why ask now?
Jeffrey arrived on May 18, 1997. Although he was beautiful, his abdominal breathing bothered Randy. Two months later, my doctor brother, Paul, examined Jeffrey. Paul reported a dull-sounding lung and no reflexes.
That night, in anticipation of a consultation with a pediatric neurologist, I pieced together the untimely death of one of our dogs a week before, some bizarre pregnancy thoughts, and observations about Jeffrey (lack of movement, weak cry and cough, falling asleep after nursing only briefly). The more notes I scribbled, the harder my heart pounded.
Jeffrey was diagnosed the following evening with SMA type 1.
Overwhelmed but determined, I spent the next few weeks online, seeking information, stretching way outside the box for alternative treatments, and connecting with fellow SMA families. I suctioned Jeffrey and researched feeding tubes. We enlisted hospice after an unfortunate consultation with a pulmonologist, and I gave our baby morphine.
Jeffrey’s expressive chocolate eyes spoke volumes, and he let me know that he was tired and ready to go. On Nov. 4, 1997, he did just that.
‘Lift a finger’ takes on new meaning
Shortly after Jeffrey’s diagnosis, Cindy Schaefer, another SMA mom, announced the formation of a Carolina chapter of what is now CureSMA. I replied, and we became fast friends. Years later, her son Kevin invited me to write for Bionews, the publisher of SMA News Today.
The lead of my columnist group, Alyssa Silva, has SMA. Years ago, I saw some of the beautiful greeting cards she’d designed as a young girl. She was already quite an entrepreneur!
Alyssa recently mentioned that she can use just one finger to draw. I remembered “39 Pounds of Love,” a documentary about Ami Ankilewitz’s life as an animator with SMA. He, too, had use of only one finger. Ami also had two missions: to track down the doctor who had told his mother he wouldn’t live past age 6, and to ride a Harley-Davidson motorcycle. The mission would be no easy feat, but his best friend and former caregiver and a director friend agreed to take him on the adventure of a lifetime.
In looking up additional information about Ami, I came across a WordPress entry. I clicked on it, stunned to see that I’d written it myself in 2009 (for a blog Cindy and I started) two days after Ami’s death. He was 41.
‘What-ifs’ and appreciation
Spring signals Jeffrey’s approaching birthday. It’s easy to picture his beaming baby smile. Sometimes vague images of him as a boy or even a young man cross my mind. I wonder what he’s doing and what he’d be doing if he were still here.
Might he have benefited from one of the SMA treatments? Would he have developed an interest in sports like Randy and Matthew, or maybe shared Katie’s aptitude for photography? Would he have had use of more than one finger? I like to think he’d have inherited some optimism from me.
I was in awe of Ami’s zest for life and am equally awed by Alyssa and all my fellow Bionews associates with SMA. Unless you knew they were impacted by the condition, you couldn’t tell by their myriad skills that they might be able to lift only a finger — if that.
Thankfully, that’s plenty for venturing outside the box.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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