When the Scary Stuff Became Real

As far back as I can remember, I have had an affinity for all things scary, creepy, suspenseful, and macabre. From “Alfred Hitchcock Presents” (which includes books, black-and-white TV reruns, and movies), to true crime drama, thriller fiction, and “The Walking Dead,” I’ve thrived on gasps, nail-biting, teeth-clenching, and heart palpitations.

Unsurprisingly, I loved Halloween while growing up. Years later, as both a teacher of kindergarteners and a mother of young children, cute projects were a must. My focus made a natural, necessary shift from gory ghouls and ghosts to witty witches and werewolves. I took full advantage of the cuteness overload.

Until 1997.

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Born in the spring of 1997, our third baby, Jeffrey, was the poster child for contentment. He didn’t squawk. He voiced his needs and wants (nursing, diaper changes, snuggles, sleep) with barely a whimper, as if he didn’t want me to think he was complaining. His coughs and sneezes were Tom Thumb-sized. He didn’t wiggle and squirm during diaper changes. Ever.

My optimistic self thought that God was generously rewarding my husband, Randy, and me with an exceptionally easy baby in exchange for doling out such a whopper of a surprise: an addition to the family when we were in our 40s.

I was stunningly naive.

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The next bombshell came two months after Jeffrey’s arrival.

On July 14, 1997, we learned that Jeffrey’s “contentment” had a name: spinal muscular atrophy. What little voice and movement he had would gradually peter out until there was no more of either. Ditto for his breathing, already considerably more compromised than we had realized.

Like virtually every newly diagnosed family, Randy and I had never heard of SMA. The pediatric neurologist explained the gravity of the situation we were facing. I heard, but couldn’t believe, the prognosis of probable death by four years; before we could wrap our heads (and hearts) around that, the genetics counselor whacked the typical life expectancy in half. Following grueling requisite medical procedures and a pervasive lack of hope, our proverbial props were nowhere to be found.

Absolutely none of the bone-chilling plots I’d gravitated toward in my earlier days could have braced me for the ominous, heart-pounding future in the clutches of SMA. It was terrifying, and it was real.

As it turned out, our active SMA duty was abbreviated but eventful. Only during the last few harried weeks did we stop trying to outwit such an insidious disease on our own, hoping to prove the medical professionals wrong. We watched Jeffrey’s decline, worried about him and our other children, Matthew and Katie, prayed, and frantically and gratefully connected to other SMA families. We built a road to Jeffrey’s upcoming resting spot on top of our little mountain and planned a funeral for our baby.

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The month of October in 1997 kicked off with a disastrous consultation with a pulmonologist, followed by the introduction of hospice. Jeffrey’s assigned nurse, Mary, was a godsend, as was the morphine to keep Jeffrey comfortable. (A particularly nerve-wracking moment was administering the morphine drops into his mouth the first time.)

It was obvious by Oct. 31 that Jeffrey’s earthly hourglass was running out. Our rural setting enabled me to ignore Halloween, thank goodness, but the day was a memorable setup for an even more memorable next — and final — few days.

It seems fitting to share an excerpt about that Halloween from “The Jeffrey Journey,” a book I wrote about our SMA assignment:

“October 31 – the day of spooks and frights, as if we needed more of either.

“At 6:25am, I gave Jeffrey a dose of breakfast morphine. His heart was pounding, and he was having trouble swallowing. He required immediate suctioning farther down his throat than usual, causing me to wonder how much morphine he actually absorbed. Five minutes later, I gave him more morphine, and fifteen minutes later, a little more. Five minutes after that, still more, until he finally settled down.

“After everyone had left for school, I dissolved into tears. My heart and head had been in perpetual conflict for almost three and a half months, and even though I was pretty convincing to myself that we could let Jeffrey go when it was time, the morning’s mini-morphine marathon left no doubt in what was left of my mind that it would be a miserable acknowledgment.”

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Since then, Halloween has conjured up memories of Jeffrey’s final days. My ambivalence about the holiday, however, can’t keep me from savoring the squeals of our grandchildren, Clara and James, during the spooky brouhaha. MomMom’s “monster” is a favorite. I’m still a sucker for cuteness, which is still in abundance.

And I can so easily picture Jeffrey’s delightfully mustering a resounding “BOO!”

Jeffrey’s older siblings, Matthew and Katie, sometimes “monstered” up for Halloween, but not always. (Photo by Helen Baldwin)

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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.