Caring for students, a baby with SMA, and pets who need ‘a little extra’
Our new shelter dog may be needy, but I think we're up to the task
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As a college freshman pursuing a degree in special education, I assisted in two nearby elementary classrooms. The students all had moderate cognitive challenges. I remember a few even now: Roger, with his suspenders and his family’s pigs (Fred and Ethel), and Tina and Richard, adorable twins. All three had Down syndrome.
My interest in working with those requiring a little “extra” included pets. As soon as my husband, Randy, and I moved into our first house, along came a puppy destined for the pound. An acquaintance soon begged us to take the dog she’d found at a dumpster. Over the years, our assortment of animals included pound puppies, strays, and aging pooches embracing their twilight years. We acquired Honey from a shelter, Maple (our granddog), and eventually Mitty, a stray cat my mother adopted for her 80th birthday. The trio hopped across the “rainbow bridge” within blinks of each other.
Our daughter, Katie, sent pictures of adoptable dogs for two years. I assured her we’d know “the one” when the right time came.
The right time apparently came.
Students, our own babies, and skilled nursing challenges
After Randy and I married, I transferred to a university without a special education program. Before returning to school for teacher certification a few years later, I substituted in schools in Fort Worth, Texas, primarily in classes for students with cognitive and physical disabilities. It was my dream job.
Upon completing my certification, Randy and I moved east to Columbia, South Carolina, where he’d accepted a plum coaching offer and I’d landed a kindergarten job at Brockman School, a self-contained setting for students with various diagnoses and disabilities.
Life was grand, but it got even better when Randy and I welcomed our first baby, Matthew! Katie joined the family three years later. Both were beautiful and healthy.
My Brockman assignment shifted dramatically the sixth year. Students I would have had were mainstreamed to regular schools, if not regular classrooms. My new charges required skilled nursing. Blindness, deafness, seizures, and diabetes were a few issues. Tube feedings, positioning, suctioning, and eagle-eye attentiveness consumed every day. My lone independently ambulatory student, capable of running simple errands, was nonverbal because of a tracheostomy. Typically the easiest student (requiring just daily suctioning), she had our school nurse, Mary, and me frantically flooring it to the ER one school day for a wicked mucus plug. She provided the vital suctioning experience I’d need later.
We survived the nerve-wracking year. Satisfied that I’d done my best with all my students, I was ready to just be a mama to our two healthy children.
Shaking things up, capped off by an SMA diagnosis
Ellie isn’t quite sure about her new home. (Photo by Helen Baldwin)
Our family left Columbia, ending up in the North Carolina mountains. Our adjustment from city slickers to mountain dwellers was eventful and perpetual, but we relished the overall slower pace.
Alas, the pace didn’t stay slow. Life’s curveballs included a surprise pregnancy coinciding with Randy’s job drama. In short order, Randy lost his job, and baby Jeffrey arrived two weeks early. Seven weeks later, one of our dogs died after being struck by a vehicle.
The proverbial cherry on top came seven days later. We learned that our sweet surprise baby harbored a bombshell: spinal muscular atrophy (SMA) type 1.
Although our active SMA duty ended before Jeffrey turned 6 months old, the assignment was replete with self-discoveries. I didn’t question, “Why us?” as much as why God gave us a precious unplanned baby for such a short time. My optimism was challenged regularly, until I pondered that being deemed capable of handling such a daunting task was an honor.
My taxing final year at Brockman had enabled me to be as ready as possible to suction when Jeffrey’s swallowing muscles petered out. I was particularly thankful when I reminded myself that God was in ultimate control, not us. And while I never anticipated applying it to my own child, I appreciated my God-given interest in caring for those who needed something extra.
A very special valentine
Ellie, snuggled and cozy, is seemingly starting to believe that her new home might be OK after all. (Photo by Helen Baldwin)
On Valentine’s Day, Randy and I drove to Charleston, South Carolina, and adopted a mama dog. I knew she was the one when Katie sent her name — Cindy, the name of the best friend and fellow SMA mama I met shortly after Jeffrey’s diagnosis. Cindy (now Ellie) arrived at the rescue with puppies and heartworms. Too terrified to walk, she was carried to the car for treatments at the veterinary clinic.
We’ve had Ellie for a little over three weeks. She is unquestionably needier than all our previous pets combined, but we’ve made some significant progress. A few times, I’ve found myself with a glimmer of fatigue-related frustration in trying to stay one step ahead — or even behind! I remind myself that her backstory will remain a mystery.
Making Ellie’s life truly joyful may be a daunting task, but we think we’ve been deemed capable of handling it.
A little angel intervention on our behalf and hers wouldn’t hurt, though.
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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