The Importance of Awareness, Then and Today

How a caregiver learned to keep her eyes open to SMA symptoms and more

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by Helen Baldwin |

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The homework assignment in fifth grade involved music. I probably wrote a few short reports about composers and attempted to draw some instruments with my dual-ended map colors.

I wrote “Music” on the outside of the blue folder and added some spiffy artwork.

Good spelling came naturally for me. My creative mother took countless entertaining liberties with language, and my dad simply had a knack for spelling.

One of the clearest parts of this particular memory is my taking my folder to show Mom, who was brushing her teeth in the bathroom a few feet from my bedroom. The door was open.

After working on my music notebook for hours, I had a question for her.

“How do you spell ‘music’?”

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Mom looked at me, obviously thinking she hadn’t heard me right. She was a musician and piano teacher. Additionally, I was taking informal piano lessons from her and formal ones from her old teacher. We’d also just started playing two-piano music together. Music was all around.

I continued, as incredulous as Mom at my inquiry. “I’ve written it so many times, it suddenly doesn’t look right. M-u-s-i-c?”

I’m not aware why this particular memory still pops up occasionally after almost 60 years. It may somehow go along with the occasional nightmares that I’m back in school, and I forgot to study for a big test, or I can’t remember my schedule and the school is a gigantic maze. Or I can’t remember the combination to my locker, which is where all my books are — the ones for the classes that draw a complete blank.

In this midnight hellscape, the more aware I try to be of my surroundings, the more muddled things seem, and the more frantic I become until I wake myself up.

I prefer being aware.

***

Like most newly diagnosed families, my husband, Randy, and I had never heard of SMA, despite its notoriety as the leading genetic cause of death in infants and toddlers. Once I regrouped slightly from the neurologist’s devastating diagnosis/prognosis spiel, I shifted into nurse mode, aware of every little change in Jeffrey. The fuzzy distinction between normal baby and SMA baby behaviors often rendered my confidence as a mama shaky at best. I rarely let down my guard.

As SMA’s destructive nature intensified, so did my awareness and anticipation in accommodating the deterioration of Jeffrey’s muscles. When his swallowing muscles weakened enough for me to fire up the suction machine, I was sorta prepared. I’d had to suction a student in my final year of teaching, but it sure wasn’t the same when it was my own child! Waning sucking muscles led to a trial of special bottle nipples, followed by using a dropper to place mere drops of milk into his mouth.

By the time Jeffrey required a marathon of suctioning and morphine to keep the respiratory distress at bay, I was as ready as anyone could be. I scribbled the morphine schedule so I didn’t have to remember it, alert to signs that it needed to be upped. Suctioning occurred as needed, almost continuously as the end of our assignment approached.

I was fully aware of the moment Jeffrey’s eyes said, “Enough.” And I was finally aware that in order for our sweet little guy to soar with the angels, I needed to give him permission to do so and the assurance that we’d be OK.

***

As our son Matthew finally relented and went to bed the night of Jeffrey’s death, I pointed out a twinkling star. Words can’t adequately describe the immense comfort that provided.

I didn’t ponder the possibility of more signs.

The first big sign appeared on our little mountaintop, the site of Jeffrey’s resting spot. Katie, our daughter, and Randy, Matthew, and I hiked up in the day’s heavy, steady snow, determined to visit Jeffrey’s spot. As we reached the mountaintop, the gray, snowy clouds parted, giving way to a crystal blue sky. As we set foot on the trail going back down, the gray clouds closed back up, and the snow continued falling the remainder of the day.

Aware at that moment that I’d likely missed other signs, I vowed to pay closer attention from then on.

I haven’t been disappointed.

***

Twenty-five years after being hurled into the SMA family, I can’t imagine life any other way. Although there will always be moments in response to some of the memories, neither SMA nor Jeffrey’s death overwhelms my days. I happily snag opportunities to share my experiences with either one.

August, designated SMA Awareness Month, is a prime chance for so many extraordinary families to share their lives with SMA. From accolades to angels, it’s a good thing this month has 31 days.

And even better that there’s no locker combination to remember.


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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