The major life changes that led to our family’s SMA assignment
A columnist recalls events that preceded her introduction to the SMA community
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Countless events shape the course of our lives: marriage, career changes, parenthood, the loss of loved ones, and health crises, to name just a few. The list is almost endless.
After eight years of marriage, my husband, Randy, and I decided we were ready to start a family. Overnight, my priorities shifted to having a healthy baby.
In short order, we giddily announced that a baby was on the way! And then, in even shorter order, I had a miscarriage. Disappointed that another pregnancy didn’t come quickly, Randy and I decided to go back to school for teacher certification. Mine was in special education.
It took a few years for me to realize that the miscarriage was a sign our baby would come when the time was right. It took even longer to understand why I needed that teaching certification.
Leaving home, teaching, and having a baby
Randy was offered a plum high school football coaching opportunity — over 1,000 miles from home. Before we could talk ourselves out of leaving our beloved Fort Worth, Texas, we headed to Columbia, South Carolina, in March 1985, to check it out. The azaleas, dogwoods, and wisteria exploding all over Columbia wowed and wooed us.
I landed a job as a kindergarten teacher at what was then the Brockman School, a specialized center for students with multiple disabilities. Surrounded by an adorable class, an experienced teaching assistant, and a wonderful circle of new teacher friends, life was pretty perfect.
In a wonderful twist of fate (which I’d later dub “angel intervention”), my parents followed us to Columbia, moving into a home that was within walking distance from us. Ecstatic, they mentioned more than once that they were ready to take on babysitting duties.
Lo and behold, almost as soon as Randy and I adjusted to our new everything, we learned that we were having a summer baby! Three summers after our son Matthew arrived, he was joined by our daughter, Katie. Our family was complete! Or so we thought.
But God had other plans.
The year that prepared me
Due to mainstreaming — moving students with disabilities into regular schools — my class roster held only one student until just before the school year started. Then, suddenly, my class filled, but with a uniquely challenging set of responsibilities.
Instead of my previous teacher’s know-how, I acquired enough skilled nursing on the fly to handle diabetes, seizures, blindness, deafness, nonverbal communication, tube feedings, and suctioning. I’d remained alert with my students the previous five years, but this was high alert for 180 days! Mercifully, we made it through the year.
Eventually, we left Columbia, and our family settled in the mountains of North Carolina. As we adjusted to our new surroundings, a surprise pregnancy blessed us with a sweet baby boy. Jeffrey was the easiest newborn I’d ever seen.
Seven weeks later, one of our dogs was hit by a car, prompting a gentle conversation about death and heaven with Matthew, who was 10, and Katie, who was 7, as we awaited the vet’s news. When we learned that Duffy hadn’t survived, I was saddened but relieved, knowing that Matthew and Katie were as prepared as they could be.
A week later, we would have that painful conversation again — this time, not about a pet, but about our precious baby.
A rare genetic killer
Jeffrey’s unusually quiet temperament, bell-shaped chest, and abdominal breathing were attributed to spinal muscular atrophy (SMA). The pediatric neurologist told us it was rare. Days later, I read online that SMA was the leading genetic cause of death in children under 2.
Wait, what? SMA is rare, yet it’s also the leading genetic killer of children under 2?
That seemed contradictory somehow, but it didn’t matter. We were told Jeffrey would probably be gone before kindergarten.
The thought of losing our baby so soon was unthinkable. With no medical treatments available at the time, we sought out alternative options we hoped wouldn’t harm Jeffrey. I reached out to my former Brockman colleagues, connected with families through the organization Families of SMA (now Cure SMA) and other SMA message boards, and prayed.
I relied on the skills I’d learned during my last year at Brockman — especially suctioning. I was grateful I hadn’t needed to practice on Jeffrey; it was excruciating enough as it was.
Jeffrey’s passing, less than three months after his diagnosis, fueled my resolve to stay connected to the SMA community. This summer marks 29 years since we first encountered this rare disease.
The dictionary defines “rare” as “not occurring very often: a rare genetic disorder.” I almost expected it to say, “like SMA.”
But the dictionary adds another meaning: “unusually good or remarkable.”
SMA changed my life in ways words can hardly capture. The extraordinary families I’ve met, and the blessings that have come solely because of Jeffrey and our SMA assignment, make the dictionary definition of “rare” feel as if it were written just for us.
February is Rare Disease Month — a fact I carry with pride.
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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