Eyes Opened and Eyes Closed

I spent a school year substituting in various special education classrooms in Fort Worth, Texas, before returning to school for teacher certification. I’d already worked with young children with developmental disabilities and loved their (usually) carefree and good-natured dispositions.

My first assignment as a substitute teacher at Jo Kelly School was an eye-opener. The students’ multiple handicapping conditions, which ranged from moderate to profound, were my introduction to a vast array of life-altering and life-threatening disabilities. I surprised myself by genuinely enjoying getting called to sub at Jo Kelly, and since many other subs didn’t feel the same, I was often called back.

There was no way to know back then that my frequent appearances at Jo Kelly would provide me with such a boost in my own teaching assignment: kindergarten at the self-contained Brockman School in Columbia, South Carolina. Like the students at Jo Kelly, all of the Brockman “Bears” had orthopedic and other handicapping conditions that ranged from moderate to profound.

For the first five years, most of my students were considered academic, and some were exceptionally bright. All were chatty, if not completely coherent. And then, courtesy of the mainstreaming movement, all but one moved to regular schools. A few went to regular classrooms.

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I had a single student on my roster as the teacher in-services commenced my sixth year. As I pondered what I’d do if the class roll didn’t expand, Mary, the school nurse, informed me I had a class.

Oh boy, did I. Every student was nonverbal, with the exception of one’s incessant hollering. The only independently ambulatory and remotely academic student had a trach. Two were fed by tube, a few had seizures, one was possibly deaf, and two were blind. One ate whatever was in his reach.

Thank goodness for my Jo Kelly days, as my teaching credentials were replaced with a crash course in skilled nursing. Remarkably, my unflappable assistant Ruthie and I survived the year. We kept our eyes wide open at all times and nursed more than a few headaches, but we only had one near-catastrophe.

***

The diagnosis of SMA came from nowhere and opened our eyes in a heartbeat. Our baby Jeffrey was beautiful, happy, and easy. With no encouragement or glimmer of hope from the medical experts, our family forged ahead on our own mission to thwart the progressive destruction.

Despite increasingly weakened muscles for sucking, swallowing, and breathing, Jeffrey was a sweetheart with mesmerizing chocolate eyes. Fellow SMA families frequently mentioned the “old soul” eyes of their own affected babies and children. Jeffrey often seemed to stare off into space, as if listening to instructions from the angels.

His expressive eyes helped compensate for muscles too weak for coos or hugs.

Baby Jeffrey spreads joy and possibly secrets to his big brother, Matthew, and sister, Katie, in 1997. (Photo by Helen Baldwin)

***

One of the biggest blessings of our SMA assignment remains the connections to some incredible folks. Two particularly remarkable individuals are MJ Purk (aka MJ Queen-Purk) and her caregiver extraordinaire, Brenda “Bforsma” Hanson. I’d need more than a column to elaborate on all the good they’ve done on behalf of the SMA community since I met them almost 25 years ago.

MJ and Brenda’s projects, through B4SMA Productions, have always strived to reach as many in the SMA family as possible. One of these ventures is a series of videos on their YouTube channel.

And one of the video series focused on the eyes of those with SMA. Per the blurb about the series, the series includes “more than 450 pairs of eyes that are filled with a wide range of emotions: joy, anger, sadness, silliness, inquisitiveness, courage, hope, strength and peace.”

Soulful eyes. Like Jeffrey’s.

***

January is National Glaucoma Awareness Month. My mother has glaucoma. She’s unable to see much of anything these days, although she struggles — eventually successfully — to read this column.

She’s endured years of grueling eye exams, eye drop routines, and myriad combinations of eye drops, gels, and ointments, hoping to keep the pressure in check and her eyes minimally comfortable. A single new drop recently rendered her blind for over a day until her eyes (almost) returned to the level of fogginess she’d had the day before.

In earlier life chapters with better vision, Mom sat down at the piano (and later, the keyboard) and played whatever her fingers desired. She could have been blindfolded and her fingers wouldn’t have noticed. These days, she listens to her music on the computer.

She closes her eyes when she can. She says it’s more comfortable.

***

After Jeffrey’s diagnosis of SMA, Mom whipped up a collection of little songs on a cassette tape for him. Jeffrey loved the soothing vibes so much, we played the tape repeatedly as we drifted off to a safe space — in my head, anyway.

The first song in the collection? “Close My Eyes”:

“Close my eyes … I’m dreaming/ Sweet dreams that never end.”

(“Close My Eyes,” the first song in Mom’s “Dreams for Jeffrey” collection. Composed and performed by JoAnn Derden, 1997.)

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.