A lesson on being thankful this holiday season
A columnist pays tribute to a late former student and his mother
I don’t remember when or why my general interest in working with children gravitated toward those with special needs.
Before returning to school for teacher certification in special education, I spent a year substituting in self-contained schools and classes throughout the massive Fort Worth, Texas, school system. My father was the principal of an elementary school that included classes for students with visual impairments and autism. I especially enjoyed subbing in those classes. Dad loved all students but seemed a bit partial to those needing something extra.
With my generic special education certification, I was deemed qualified to teach children diagnosed with cognitive, orthopedic, behavioral, and learning disabilities. My expectation of teaching in Fort Worth, however, was squelched when my husband, Randy, was offered a teaching and coaching job in Columbia, South Carolina.
During our trip to Columbia for our respective interviews, I visited three self-contained schools. My favorite students, and the ones I felt most qualified to teach, had Down syndrome. I had hoped to land a position at the school for students with cognitive disabilities, but didn’t. Instead, I was assigned to Brockman School, a self-contained setting designed for students with orthopedic and other multiple disabilities. I would be teaching kindergarten.
A special student and his mother’s wisdom
My kindergarteners were adorable, and I couldn’t have asked for a better teacher assistant. The other staff members were exceptional as well. I can’t adequately describe the rest of the students, but all of them became like family in short order. I still keep up with a couple of my students four decades later.
While I remember all of my charges with fond (and sometimes nerve-wracking) memories, some of them stand out even now. Clay is one of them. Pushed into the classroom in his teal blue wheelchair by his affable, optimistic mama, Clay didn’t seem particularly delighted to have been bumped up to kindergarten from preschool. He was quite fond of his former teacher, and even though he didn’t speak, I knew I’d have to earn acceptance from him. Happily, I did.
Hampered by severe cerebral palsy, Clay needed assistance with everything but expressing his contagious joy. The sweet girls in the classroom were eager to oblige their charming classmate, plotting how to provide at least some sort of assistance despite their own physical limitations. Even if their intentions didn’t necessarily pan out, their kindness and creativity regarding Clay knew no bounds.
Annette, Clay’s mother, mentioned one day that someone once asked if she would choose to have Clay “healthy” if possible. Annette replied that she would not. I tried concealing my shocked face, as I couldn’t imagine being thankful for a child’s severe disability.
Six years later, I would remember that, and I would understand.
Big surprises
Life has a way of jerking the rug out from under you. About 18 months after moving our family to the North Carolina mountains, Randy and I found ourselves plunked back on newborn duty. Our beautiful, sweet Jeffrey, adored by his siblings, Matthew and Katie, gave “surprise” new meaning: A mere two months after his unplanned arrival, the proverbial rug was yanked away from us when he was diagnosed with SMA. Coincidentally, before the diagnosis, I had compared Jeffrey’s bright eyes and lack of movement to Clay’s.
In a surreal realization that Jeffrey likely wouldn’t be with us for very long, I mailed letters to everyone I knew, asking for possible information about SMA, alternative treatments, and prayers. The first response came from Brockman’s nurse, Mary, who had become a trusted friend. One of Brockman’s older students, a favorite, called and asked if I knew that he, too, had SMA. (I did not.)
Our fast and furious quest to thwart SMA’s progression failed to halt its destructive nature. Jeffrey wasn’t even 6 months old when our life-altering assignment ended.
Shortly after Jeffrey relinquished his earthly life and I began adapting mine, I pondered what we’d just gone through. During the course of our brief journey, I snagged a new best friend, met many extraordinary SMA families online, witnessed the undeniable power of prayer and faith, and discovered that we are considerably tougher than we think. I also learned about signs!
I thought about Annette’s sincere conviction that her precious Clay was just perfect as he was. And despite wishing Jeffrey were with us, I understood completely. What we gained during our SMA journey wouldn’t have been possible without it.
Clay and Jeffrey
Clay, whose birthday is May 19 — the day after Jeffrey’s — passed away earlier this month. That he lived 40 remarkable years is a testament to the determination, dedication, and faith of his devoted family.
Like Jeffrey, Clay chose to depart for the perfect place in November — the month associated with thankfulness and gratitude. For believers in heaven, the timing perhaps serves as a reminder of the lessons a child or adult with disabilities offers.
Even a teacher can’t teach that.
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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