Fall’s emotional tug hasn’t changed much in 26 years
Seasonal changes prompt memories made bittersweet by an SMA diagnosis
It’s officially fall in the U.S.! The weather here in the North Carolina mountains has been stupendous. I could almost hear our assorted fans breathe a collective sigh of relief when we finally turned them off at times and even closed some windows at night to keep from rousing the off-duty heater.
With the welcomed seasonal shift comes crisper air, drifting leaves, and hints of colors all around this scenic rural area. And while fall’s glory is my favorite time of year, a bit of melancholy pervades the season.
While I can’t remember what transpired this morning, I certainly can’t forget the events of late September 26 years ago.
My husband, Randy, and I lived in Columbia, South Carolina, when our children, Matthew and Katie, were born. Randy coached football, and I taught kindergarteners at Brockman School, then a self-contained school for children with multiple disabilities.
Our family eventually traded the lush Columbia scenery for rural mountain life in North Carolina. Unbeknownst to us, the old cemetery we discovered atop the little mountain on our property served as an omen. It might as well have been a flashing neon sign.
Even if we’d understood it, though, we would have scoffed.
God’s little surprise
As we were almost becoming adept at rural mountain life, God tossed a tiny curveball our way in the form of a surprise pregnancy.
“Yippee!” was likely not the immediate response Randy and I exclaimed, and for good reason. He had recently begun a new coaching job, I was helping my parents at the family’s new lodge on the Blue Ridge Parkway, and we’d almost mastered Matthew’s and Katie’s school and extracurricular routines. And we were in our 40s!
“I know!” God winked.
Figuring God knew what he was doing, we accepted the pending addition with eventual giddiness.
Our beautiful boy, apparently excited to meet us, arrived two weeks ahead of schedule on May 18, 1997. Jeffrey was such an easy newborn, I wondered when the tough newborn phase would begin. It never did. Jeffrey was an agreeable, contented baby, and he adored his doting family.
We settled into our new routine, but not for long. A surprise that Jeffrey harbored was about to knock our props away.
Jeffrey’s abdominal breathing at birth bothered Randy, but as all else seemed good, there was no further investigation. As Jeffrey approached 2 months, however, Randy asked my physician brother, Paul, to take a look himself.
Paul’s examination of Jeffrey on July 13 revealed a dull-sounding lung and no reflexes. Upon referral from our pediatrician the following morning, Randy and I sat in the office of a pediatric neurologist at Brenner Children’s Hospital that evening. Based on my Brockman stint from years before, I was quite confident that whatever issues Jeffrey had were fixable.
I was wrong. Our sweet baby’s tentative diagnosis of SMA type 1 was not fixable.
After excruciating tests to confirm SMA, we were left to fumble on our own. That we did, scrounging outside the proverbial box for ways to thwart SMA’s deadly progression. Jeffrey endured chiropractic cranial and spinal adjustments, essential oil regimens, therapeutic electrical stimulation (TES), massage, suctioning, and more during the first 10 weeks post-diagnosis.
SMA’s insidious progression
It was after a second TES session on Sept. 26, 1997, that SMA’s destructive nature ramped up. The increased discomfort of the session for Jeffrey would have been plenty, but it was just the beginning. Upon arriving back home, 30 miles up the mountain, I reached to get Jeffrey out of his car seat. He started turning blue, warranting a mad sprint inside the house to access the suction machine. I prayed it would work, and it did — that time, anyway.
During the night, Jeffrey experienced heavier breathing, followed by episodes of shallow breathing and cessation of breathing, before an eventual return to a somewhat steadier pattern. Randy and I subsequently opted to halt all medical experiments and let Jeffrey be just a baby, albeit one whose muscles were wasting away before our eyes.
Spectacular leaves couldn’t salvage Jeffrey’s final consultation
Our decision to halt medical consultations and treatments lasted one week. At that time, an opportunity opened up with a pulmonologist who had a toddler patient with SMA. It was our remaining card.
The early October drive to Asheville, North Carolina, was gorgeous. The entire three-hour trek was graced with leaves strutting their fall stuff impressively. I realized that I’d somehow missed the spectacular foliage in our own backyard.
The exquisite leaf colors were uplifting, but the appointment itself evolved quickly into a nightmare. After a fateful decision by the pulmonologist, Jeffrey’s condition deteriorated significantly until he snagged his wings a month later.
Fall and its signature cool, crisp mornings and splendid color show may always be bittersweet for me, but it’s still my favorite time of year — at least until winter’s peaceful snowfall.
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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