Finding Blessings Even When ‘Pretend Scary’ Becomes Real Fears
A columnist's memories of scares take on many forms at Halloween season
I credit my mother for my affinity for (most) things hair-raising. She loved thrillers. While her vision allowed, she was drawn to the TV shows “Forensic Files” and “Criminal Minds,” delighted to learn that our daughter, Katie, was also a fan.
Halloween’s creepy stuff comes once a year, but in my preteen years, the director and master of suspense Alfred Hitchcock was available year-round. A television series, movies, and untold paperbacks full of Hitchcock-connected stories kept my heart trembling on demand.
In our current rural setting, nature provides its own heart-pounding thrills with eerie night sounds and glowing eyes in the trees, pastures, and who knows where else. Two squirrels flying out of our dining room wall shortly after we moved into our old farmhouse ratcheted up my heart rate, ready or not. (I was not.)
On Halloween in 1997, however, I didn’t need or want any reminders of spooks and goblins. Our family’s personal scary scenario commanded our full attention.
Our baby was dying.
Jeffrey arrived on May 18, 1997, a dream baby like his older siblings, Matthew and Katie. I noticed he often fell asleep after nursing briefly, but failed to realize that he never squirmed. Remarkably, I didn’t consider his soft cry and weak cough to be indicators that something wasn’t right.
My doctor brother, Paul, examined Jeffrey at the request of my husband, Randy, on July 13; he found a dull-sounding lung and no reflexes. The expression on Paul’s face divulged that whatever the cause, it was serious. He said the pediatrician, at the next morning’s scheduled appointment, would probably refer us to a pediatric neurologist.
The following evening, sitting in a neurologist’s office, we learned the probable culprit for Paul’s findings and its ramifications.
We were on the brink of real-life terror.
From pretend terror to the real deal
Randy and I tried to absorb all the neurologist threw our way that fateful evening. He felt sure Jeffrey had SMA type 1, something completely foreign to us. When he began the prognosis revelation, my head and heart shattered. The surreal “death by 4” was quietly halved by the genetics counselor.
Any props remaining after that conversation were history when the testing began shortly afterward. Jeffrey’s arms were secured above his head for the chest X-ray; it was the first time I’d heard our 2-month-old wail.
The following morning, torture continued with a new SMA blood test. The sweet nurses attempted to draw blood from their tiny patient’s heels, but eventually resorted reluctantly to his forehead. I could barely watch through the tears.
The final act in this certified nightmare came with an electromyogram. Electrical currents were zapped to Jeffrey’s leg muscles to determine viability.
I don’t need to elaborate. Every testing ordeal was excruciating. What in heaven’s name was the purpose of an assignment like this?
Our discovery would be immediate and a blessing.
Finding blessings in devastation
After joining what was then called Families of SMA (it’s now CureSMA) the following morning, we were hooked up to the internet. Once online, my tech-challenged self discovered other families on the group’s message boards and never looked back.
Following several heart-pounding episodes, Jeffrey’s death came four days after Halloween in 1997. He was 5 and a half months old.
I never desired to participate in the “F**k SMA” (or cancer or whatever) trend. Sure, I wish our bonus baby were thriving today at 25, but that wasn’t part of God’s plan.
What I gleaned from our brief, involuntary assignment was the opportunity to see firsthand the amazing power of prayer and faith, as well as my becoming alert to the presence of signs (like angel wings and feathers). What a comfort the signs from Jeffrey, my father, my mother-in-law, and my mother have been!
In addition, I can’t adequately express the healing power of the friends I met solely because SMA hurled us into the same club. One such friend helping me remain upright for 25 years is Cindy Schaefer. Our friendship, long ago transcending SMA, continues to reveal uncanny similarities in our lives.
Cindy’s son Kevin, a preschooler when I met him, invited me to join the BioNews staff as a fellow SMA News Today columnist.
In “A PHriend Unseen Can Be a PHriend Indeed,” fellow BioNews columnist Colleen Steele describes the invaluable online friendships stemming from her son’s diagnosis of pulmonary hypertension. She writes, “I hate giving the disease credit for anything, but while stumbling in its darkness, I’ve made lasting friendships with many whom, 14 years later, I still haven’t seen in person and possibly never will.”
I’ve met Cindy and a few other SMA warriors in person on a handful of occasions. What a treat! As most of my SMA friendships remain “unseen,” though, I’m thankful for email exchanges and Facebook posts.
Bonus thrill in the sky
I still love suspense, although I usually don’t have time to seek out heart-pumping thrills.
Something I “happened” to see in the sky the other day was pretty pump-worthy. Angel wings or feathers? Doesn’t matter.
Thrills like that won’t ever get old.
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.