My SMA awareness was zero … until it hit home
I had 6 months to absorb hard lessons; I've had decades to appreciate them
I was a conscientious student, highly motivated to excel whenever possible. My father was a public school teacher and later a principal at the elementary level. My mother taught piano at home.
Neither parent browbeat my younger brother and me into obsession over schoolwork (or, for me, piano), but in typical firstborn perfectionist form, I was driven to exceed my best for them and for my teachers. It’s a wonder I didn’t develop an ulcer.
On the other hand, I wasn’t overly interested in the goings-on out in the real world, at least not usually. It wasn’t that Paul and I were locked in a dungeon, but I generally didn’t follow current events unless I had to turn in a report.
A lackadaisical sense of awareness applied to my personal surroundings, as well. In junior high and high school in Fort Worth, Texas, my best friend and I often rode the bus bound for downtown. We’d hop off at one of the longstanding movie theaters, grab a snack at the concession stand, glue our eyeballs to the movie, then saunter around downtown before catching the bus home. Unsavory situations didn’t seem particularly prevalent; we watched where we were going, not so much to be on the lookout as to simply avoid plowing into someone. Oblivious, I was.
Years later, my husband, Randy, and I moved to Columbia, South Carolina. I taught kindergarteners at Brockman School, a self-contained setting for students with orthopedic needs ranging from relatively mild to profound. A few students were ambulatory, typically with walkers or crutches. Students in power wheelchairs usually steered themselves, but many more, in manual wheelchairs, required pushing. Feeding, personal care, and positioning needs ranged from “not much” to everything.
Randy and I welcomed two children while I was at Brockman. During each pregnancy, I was acutely aware of every twinge and pang. It didn’t matter that the prenatal checkups were deemed uneventful. I took awareness to the next level and asked questions … except for one seemingly obvious one, considering I was surrounded by children with severe physical limitations: Had children with handicapping conditions rendering them immobile moved in utero? Both my babies moved well, and I presumed (correctly) both would be healthy.
New surroundings, a big surprise, and a red flag or two
Within days of our family’s move to an old farmhouse in the North Carolina mountains at the end of 1995, we experienced snow, temperatures too arctic for snow, and wind — lots of all of it. Frozen plumbing, flying squirrels, and more came with our new territory.
And — bingo! — so did an unplanned pregnancy. Considering Randy and I were in our 40s, the news left us stunned and scrambling.
At one prenatal exam, I asked the doctor what I should’ve thought to ask when I was pregnant at Brockman: Did children who couldn’t move do so in utero?
The doctor didn’t know. I wondered why I’d asked; Jeffrey’s movement was within expectations.
On May 18, 1997, Jeffrey arrived. He cried on cue at birth and then slept … and slept … and slept some more. Matthew and Katie, his siblings, had each nursed heartily as soon as they were handed to me, so I expected our new little cutie to follow suit. The heat in our room was stifling, though, and seemed like a reasonable explanation for his lethargy.
For two months, our beautiful baby boy did things his way. His exceptionally quiet, easy demeanor and absence of normal-newborn stretching and squirming were way out of kilter with Matthew’s and Katie’s newborn behavior.
I’ve pondered, given the substantial red flags, how I was not aware something serious was going on. Actually, I probably was aware that something was amiss; I just didn’t want to believe it. Besides, Jeffrey was undeniably content!
SMA devastation, awareness, and even appreciation
Jeffrey was 8 weeks old when life as we’d known it was shelved. The pediatric neurologist attributed his poor muscle tone, weak cry, waning suck and swallow, and bell-shaped chest to spinal muscular atrophy type 1, a rare, genetic, progressive nightmare of a disease. Thankfully, there are a few treatments in place today, but SMA still leads the pack of genetic killers of children younger than 2.
Jeffrey wasn’t with us for even six months, but what a punch those few months packed. We put our faith into action and watched prayer at work, though rather ironically — initially to save Jeffrey, then to let him go. I learned about signs because of Jeffrey, appreciative of the immense comfort they’ve provided me and others. The impact of the people we met solely because of SMA (fellow SMA families, generous folks in our community, and a new BFF) continues 28 years later.
August is SMA Awareness Month. Obviously, “awareness” for those affected by SMA doesn’t end when the calendar flips over to September. I’m thankful, though, for whatever heightens knowledge about the miraculous treatments and the blessings that flow from a devastating diagnosis — especially the extraordinary families affected.
Fellow SMA News Today columnist Kevin Schaefer wrote: “All of us say that it’s a club none of us volunteered for, but it’s one we can’t imagine our lives without.”
Amen to awareness … and even appreciation.
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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