The Emotional Aspects of October (aka Beauty and the Beast)
A mother remembers an SMA treatment that didn't work, 25 years ago
My husband, Randy, and I live in the North Carolina mountains. The New River State Park down the road lures campers and canoers in summer months.
From late September through late October, the leaf-lookers join in. Fall is spectacular around this part of the state, with bountiful mountains and long-range views rivaling a kaleidoscope’s magic.
One of the most scenic trips Randy and I have made was in 1997 — Oct. 6, to be exact. We headed to Asheville, three hours away. I still remember the magnificent leaf colors on our trip.
I remember the whole trip.
A baby and a life-changing diagnosis
Our surprise third baby, Jeffrey, arrived on May 18, 1997. Other than being a bit early, his entrance was quiet. I attributed his preference for sleeping over nursing to the oppressive heat in the hospital room.
We stumbled into a doable routine with Jeffrey and his doting siblings, Matthew and Katie.
And then our beautiful bonus baby was diagnosed with the deadliest form of SMA.
We learned in short order that SMA was the leading genetic killer of children under 2. There was no treatment and certainly no cure.
On our own, we grabbed at “alternative treatment” straws, trying to thwart the progression of the insidious disease. On Oct. 6, 1997, we grabbed another straw in the dwindling supply.
It would be the last one.
A beast of a trip in the beauty of fall
The purpose of our trip to Asheville that fateful, gorgeous October morning was to seek consultation from a pulmonologist who was using BiPAP and gabapentin, an experimental drug for SMA, on another young boy with the condition. The doctor went straight for the in-exsufflator (coughing machine). Ignoring my concern that Jeffrey was too young to follow requisite commands, he fired it up.
Our baby’s free fall commenced. The first of several episodes of respiratory arrest led to the emergency room and a subsequent overnight stay in the hospital — with BiPAP.
Back home (miraculously), we were assigned the best hospice nurse possible until God handed our little guy his wings a few short weeks later.
The emotions of fall, up a notch this year
Every fall, I find myself a little emotionally rattled and eventually realize why. The memories of “that fall” — specifically, Oct. 6 — remain vivid 25 years later.
This year, fall includes an added twist. My mother, also my brilliant piano and keyboard partner for more years than not, snagged her golden ticket to heaven in February. Her diminishing vision and hearing understandably provided a sense of urgency on her part to “hop the train,” as I call it. She counted on a positive COVID-19 test to help her snag that ticket, and it didn’t disappoint.
Two months later, a major water leak wreaked havoc in the upstairs of the house where Matthew and his family live (in my folks’ former house) and a large portion of Mom’s apartment downstairs. The cleanup crew came to pack up all of Mom’s possessions for storage while soggy floors dried out and repairs were made.
Everything hauled off was returned on Sept. 12. Before tackling the boxes, I spied Mom’s keyboard that had already been unpacked; my keyboard had been ruined and written off. I felt impressively calm.
I then opened the first box and came across a photo of Mom and me at the keyboards, playing together the day after my dad died 16 years earlier. After a few intense months of Mom’s worrying about Dad’s failing health and my worrying about them both, it was good to get back to the keyboards that day, and good to laugh. Mom and I did a lot of both throughout the following years.
Helen, left, and her mom, JoAnn, beginning the healing process in 2006, after Helen’s father’s death. (Courtesy of Helen Baldwin)
I unpacked some of our music books.
My eyes welled up.
“My” chair when I visited Mom and her beloved recliner had both been ruined by water and tossed. Still, I could easily visualize them and us, sitting, laughing, and catching up on whatever had happened since our visit the day before.
Last year, we were likely talking about her upcoming 89th birthday. She was adamant that she did not want to see 90.
Her 90th birthday is Oct. 16th.
I opened another box and found some of Dad’s flannel shirts and overalls. The tears fell.
I unpacked a picture of Dad and Jeffrey that had been on Mom’s wall. More tears.
Helen’s dad, known as Papa, adoring his youngest grandchild, Jeffrey, in 1997. (Photo by Helen Baldwin)
And then I found a framed poem Mom had had for years.
All to myself I think of you —
Think of the things we used to do,
Think of the things we used to say,
Think of each happy yesterday.
Sometimes I sigh and sometimes I smile,
But I keep each olden, golden while
All to myself.
The framed sampler print was just a portion (slightly changed) of Wilbur D. Nesbit’s poem, but it was sufficient. Tears in holding for months finally let loose, followed by the annual tear fest stemming from the fall of ’97.
Considering the moments while getting this column done, there’s plenty more where they came from.
October … Beauty (of the leaves) and the Beast (of grief).
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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