My SMA journey has mirrored my experience with football
Even if I didn't know what was happening, I never sat idly on the sidelines
As a high school senior, I belonged to our school’s coed spirit group. I belted out the cheers at the football games enthusiastically, although my pigskin smarts fit on the head of a pin. An astute observer, I quickly identified “first and 10” as a good thing because of the crowd’s fervor. However, it wasn’t until years later, when my husband, Randy, became a high school football coach that I acquired any appreciable football sense.
As 1995 wrapped, Randy and I exchanged small-city life for an old farmhouse in the North Carolina mountains. Even our children, Matthew and Katie, embraced the adventure!
We’d been living in the mountains a few months when Randy accepted a new head coaching position in an adjoining county. He faced challenges from the get-go.
While he attempted to decipher the trials at school and on the football field, I was deciphering a few things myself. I scored first: I was unexpectedly pregnant. Baby No. 3 was scheduled to arrive on June 1, 1997, shortly after my 43rd birthday.
Our baby’s birth on May 18 promptly balanced the turmoil of what remained of Randy’s excruciating school year. Jeffrey was beautiful and strong, pushing up on my legs during the first few days. He did sleep a lot, even when he was surely hungry, but I presumed it was because his arrival had been two weeks ahead of schedule.
I presumed wrong. At two months, we learned that Jeffrey himself wasn’t the biggest surprise.
That would be his diagnosis of SMA.
Beyond the sidelines
Randy held several coaching positions before hanging up the whistle in the fall of 2012. By the time he stood on the sidelines for the final time, my dutiful spousal résumé included typing practice schedules and plays for wristbands, washing uniforms, painting locker rooms, and cleaning field house toilets. I’d finally learned enough to vaguely comprehend the gist of the game, though I still ask on occasion, “I don’t understand — what happened?”
By July 13, 1997, Jeffrey’s abdominal breathing and bell-shaped chest were more pronounced. He was only moving slightly, and my physician brother, Paul, discovered a dull-sounding lung and no reflexes. The following evening brought a consultation with a pediatric neurologist, who was certain Jeffrey had SMA type 1. Children with that type, the most severe, were usually gone by age 4.
The pediatric neurologist’s explanation of SMA included no semblance of hope. Randy and I were on our own.
A few days later, as my head cleared a bit, I questioned God. “I don’t understand — what happened?” He’d given us a baby we hadn’t planned, only to take him back? It made no sense.
I quickly composed a letter asking for prayers and any information regarding SMA or alternative treatments that might be remotely beneficial in our new assignment. After addressing the first batch of envelopes to my former colleagues from Brockman School, where I’d taught, I dug up addresses of folks I could only vaguely recollect.
We weren’t about to sit idly on the sidelines.
Even when you think you know how things are going …
Football teams score by crossing into the end zone with the ball, either by running it, passing and receiving it, or kicking it. It’s the offense’s job to score and the defense’s job to prevent it, though the defense can score in certain circumstances.
Having an equally capable and determined offense and defense on the field can make for heart-pounding competition. Even when a score looks inevitable, a fumble, interception, or botched kick could foil the momentum and alter the eventual outcome.
The day after Jeffrey was diagnosed, Randy tracked down an alternative practitioner who suggested a few supplements. The following morning, I began the supplement routine with our tiny, willing warrior, and by that night, I noticed slightly increased movement, slightly stronger hand grip, a slightly louder cry, and slightly more head control.
I was floored. After just a few supplements and a lot of faith and prayer, it looked like we were on our way to scoring a touchdown against SMA. First and 10, do it again! And again!
SMA: A blessing in disguise
All the cheering and encouragement from Jeffrey’s biggest supporters failed to muster a victory against SMA — at least, not in the way we’d hoped. Flickers of improvement in any capacity (movement, nursing longer, etc.) were fleeting at best, quickly petering out to below the baseline until it became obvious that the defense — SMA — was simply too much. Jeffrey ditched his proverbial cleats on Nov. 4, 1997, two weeks before he turned six months.
It may seem that SMA won, but it didn’t. Lifelong friendships, witnessing the power of faith and prayer, discovering our own inner strength, becoming alert to signs — those things don’t show up on a scoreboard. Yet they’re all indisputably better than even the winning touchdown.
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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