On movie night, we examined ‘The Little Things,’ prompting memories
The other night, I asked my husband, Randy, if he’d like to watch a movie. Although I was in the mood for some Denzel Washington action, another of his flicks caught my eye. I wasn’t familiar with “The Little Things,” from 2021, but it had a stellar cast and ominous descriptions like “serial killer,” “terrorizing,” and “disturbing secrets.”
I buckled up for the anticipated plot twists. I prepared for Jared Leto’s slimy character, Rami Malek’s cocky one, and Washington’s reticent one. But when it was over, the movie had ended without the killer’s identity being revealed — which was no little thing!
As the credits rolled, I quickly searched my phone to find out what the heck had just happened and how we’d missed the big reveal. As it turns out, there was no big reveal. What a disappointment that we’d stayed awake only to be strung along!
The next day, it hit me: The tauntingly unfinished business in “The Little Things” was precisely what had kept me glued to the television screen as a young girl watching “Alfred Hitchcock Presents” and Rod Serling’s “Twilight Zone” in the 1950s and ’60s. My imagination and adrenaline always swirled with these shows. In those younger days, the next episode never came soon enough for me.
It also occurred to me that somewhere along the line, the appeal of distressing tensity had taken an uncomfortable turn.
“Somewhere along the line” happened on July 13, 1997.
A turn of events
Randy and I had been married for 12 years when our first baby, Matthew, was born. Three years later, our daughter, Katie, made her memorable entrance. Shortly after we moved to the mountains of North Carolina, Matthew and Katie became doting older siblings to our surprise addition, Jeffrey.
Easily comforted and only minimally squawking, Jeffrey was an ideal baby for middle-aged parents. Randy was bothered, however, by Jeffrey’s abdominal breathing, which was present at birth. But because no medical professional had seemed concerned, I just enjoyed our little guy.
As Jeffrey approached 8 weeks old, my brother, Paul, and his family made plans to visit the family lodge that our parents operated on the Blue Ridge Parkway. It was always good to get together, but because the visit would fall on Paul’s birthday, on July 13, we had an additional reason to celebrate.
Randy, increasingly wary of Jeffrey’s abdominal breathing, asked Paul, a physician, if he would bring his stethoscope and examine Jeffrey while he was here. When Paul agreed, it dissipated a bizarre fog that had enveloped me since early in the pregnancy. In an instant, I knew I should’ve been considerably more alert. I was incredulous that I’d overlooked what had seemed like mere idiosyncrasies before: Jeffrey’s weak cry and cough, his lack of kicking and squirming, and his pattern of always falling asleep while nursing.
During the exam, Paul made two startling discoveries: Jeffrey had a dull-sounding lung and no reflexes. I didn’t know what that meant, but one look at the somber expression on Paul’s face told me it wasn’t good. He explained that Jeffrey’s routine checkup the following morning would likely involve a consultation with a pediatric neurologist. It was obviously no longer a well visit.
Teaching experiences prepared me for SMA
When we moved from Fort Worth, Texas, to Columbia, South Carolina, years before, I was assigned a teaching position at Brockman School, then a self-contained school for children with orthopedic and other conditions. It wasn’t my first choice, but I loved the students, my assistants, and other co-workers.
I now wondered if my experiences at Brockman, which shifted primarily to skilled nursing my final year, would play a crucial role in whatever this unforeseen development turned out to be. An optimist, I considered it a reasonable possibility.
At the same time, however, this surreal twist in our family’s story left my heart pounding as if it had been concocted by Hitchcock himself. And it was terrifying.
Jeffrey was seen at Brenner Children’s Hospital in Winston-Salem, North Carolina, the day after Paul’s exam. After several hours of exams by interns, the neurologist delivered the verdict, which wasn’t yet official until it was confirmed by testing. It was a severe case of the deadliest form of spinal muscular atrophy (SMA), an unknown of mammoth proportions.
The prognosis — which at the time was death, likely before a child’s fourth birthday — left us reeling.
There was no treatment or cure back then, which meant there also was no hope. Still, Randy and I sought a miracle in untold nooks and crannies. We followed through with any idea that seemed remotely feasible, as long as it didn’t cause Jeffrey undue discomfort.
My stint at Brockman, in particular the skilled nursing for which I had felt so unqualified, proved to be invaluable. As SMA’s grasp tightened on our son, our focus shifted from trying to heal him ourselves to letting God tend to it. He did just that on Nov. 4, 1997, when Jeffrey was set free.
And that was no little thing.
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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