The year SMA obliterated Halloween’s mojo for our family
When I was growing up, I gravitated toward creepy, hair-raising movies and books. I loved being spooked, especially on Halloween. I’d become deliriously giddy when the autumn wind in my native Fort Worth, Texas, howled during trick-or-treating.
By the time I became a teacher of kindergarteners who had a range of diagnoses, Halloween’s terrifying draw had shifted to the mostly cute and minimally scary. It remained that way when our children, Matthew and Katie, were young. At the moment, our grandchildren, Clara and James, generally prefer the same.
“Minimally scary” may not apply to our old farmhouse, though. For the past 30 years, it has impressed with respect to its assortment of creepy-crawly critters. Intricate cobwebs and spectacular spiders are particularly prevalent, inside and out. A few years ago, Clara and James expressed grave concern about the size of some of the webs on our porch and asked if I’d seen them. I teased that I was just getting ready for Halloween. “In June?” they replied incredulously.
Actually, I stopped getting ready for Halloween a long time ago — 28 years ago, to be exact.
A job goes sour, and a baby arrivesÂ
My husband, Randy, was hired as a head coach in the summer of 1996 to straighten out a nearby high school’s football program. The hiring principal’s sudden and unexpected resignation, though, resulted in distressing chaos, with Randy stuck in the middle.
Halloween’s horror that year had extended to Randy’s work. But because God sometimes seems to have a sense of humor, the pendulum shifted almost to the opposite end of the tension meter with another unexpected fright: As middle-agers, we were expecting a baby.
Randy and I muddled through the school chaos and refreshed our new baby know-how for the impending addition to the family. Shortly before the school year ended, Randy learned that his contract wouldn’t be renewed. Despite uncertainties as to what was next, there was mostly relief.
As if to reward us for our acceptance of this slight glitch in life, God delivered our surprise baby soon after. On May 18, 1997, Jeffrey arrived, beautiful and perfect.
While Jeffrey himself was a whopper of a surprise, he harbored a bombshell as well: SMA, the leading genetic killer of children under 2.
Jeffrey’s birth, two weeks earlier than his due date, set off no alarms. While his abdominal breathing concerned Randy, no one else seemed bothered, so neither was I. Unlike Matthew and Katie, our new tiny bundle didn’t nurse when provided the opportunity minutes after his birth, but it was also insufferably warm in our room. Jeffrey’s preference for snoozing seemed reasonable.
At home, Jeffrey’s extraordinarily easy ways continued as we settled into our new routine. Randy scrambled to establish a carpet dry-cleaning business. Matthew and Katie helped tend to Jeffrey as they could. They adored him, especially when he started smiling.
Baby Jeffrey enjoys full attention from his doting siblings, Matthew and Katie, in 1997. (Photo by Helen Baldwin)
Randy’s escalating concern about Jeffrey’s abdominal breathing prompted my brother, Paul, who is a doctor, to examine Jeffrey. Paul somberly revealed his findings: a dull-sounding lung and no reflexes, likely warranting a referral to a pediatric neurologist. Sure enough, the following day, our pediatrician sent us for a neurological consultation.
On the evening of July 14, 1997, at Brenner Children’s Hospital in Winston-Salem, North Carolina, Jeffrey was diagnosed with a severe case of the deadliest form of SMA. Although it wouldn’t be official for a few weeks, the neurologist was confident he was correct.
He explained how SMA would claim the muscles used for sucking, swallowing, movement, and breathing. It usually took the genetic killer less than four years to complete its destructive course. The end was usually painless, he said.
We listened to how Jeffrey’s life would end before kindergarten. The doctor may have said more, but we were in such a surreal stupor that tears didn’t even start immediately. Once they did, though, I wondered if they’d stop.
A dark porch on HalloweenÂ
SMA’s lethal destruction was swift. I realized that Jeffrey’s strong reflexes at birth had begun petering out within days, leaving him with only a hint of muscle tone. I had foolishly and naively attributed his cough and weak cry to his being an exceptionally easy baby.
On Oct. 31, 1997, Randy and Matthew ventured out to their weekly high school football game. Katie gleefully remained home, providing witty and sarcastic commentary to whatever was on TV. Under the influence of morphine, Jeffrey remained perched on his pillow in my lap. It was the only place he wanted to be.
The porch lights remained off that Halloween for the first time ever. I didn’t need (or want) masked goblins showing up at our door. The notion that something might happen with Jeffrey before Randy and Matthew returned home was terrifying enough.
On Nov. 4, 1997, Jeffrey snagged his wings on a spectacularly gorgeous night and took flight to the perfect place. It was anything but scary, as I knew Jeffrey was safe — forever.
Our porch remains dark on Halloween.
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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