Amid the chaos, spring’s transformation brings hope

My husband, Randy, and I had our first baby while I was teaching students with a variety of difficult diagnoses. Our son, Matthew, was followed three summers later by our daughter, Katie. During both pregnancies, I never worried that they wouldn’t be healthy. Then, before I blinked too many times, both were in elementary school.

With another blink shortly after we moved to the North Carolina mountains, we found ourselves welcoming a third baby in the spring of 1997. Like his siblings, Jeffrey was beautiful. Arriving a couple of weeks early, our little guy wasn’t as hefty as his brother and sister were, but no red flags signaled any trouble to me. Randy was concerned about Jeffrey’s abdominal breathing, but I ignorantly presumed it was a minor issue.

If only.

I marveled at Jeffrey’s placid temperament but began noticing things that should’ve sounded my “mama siren.” He never wailed; he fussed only minimally when he needed something; his cough barely registered above a whisper; he usually fell asleep when nursing; he never squirmed. It was as if he’d received heavenly instructions to be very still and quiet for his middle-aged parents.

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Incredibly, none of this registered with me for eight weeks. My observations, the untimely death of one of our dogs, and the sobering findings (dull-sounding lungs, no reflexes) from my physician brother’s brief exam of Jeffrey collided into a mind-boggling realization: Something was going on with Jeffrey.

My ensuing panic tried to snag some of my trademark optimism as I considered that whatever it was, it might be fixable. But even my sanguine self had a sinking feeling that whatever it was, it was neither good nor fixable.

Introduction to SMA

The day after my brother, Paul, examined Jeffrey, Randy and I faced the pediatric neurologist, who explained that the likely diagnosis was spinal muscular atrophy (SMA) type 1. I was processing what each of those words meant when he walloped us with the prognosis: Jeffrey likely wouldn’t see his fourth birthday. My positive self gave way to a waterfall of disbelieving tears.

There were plenty more tears during that overnight stay at Brenner Children’s Hospital in Winston-Salem, North Carolina. The genetics counselor halved the probable life expectancy to two years. Memories of the grueling tests that confirmed the SMA diagnosis remain fresh almost 28 years later. Life as we’d known it was relegated to the history books.

Almost immediately, seemingly simple things made a big impact. A beloved former student of mine, LaMondre Pough, called to say that he also had SMA. LaMondre’s empathy and support provided a crucial boost at the time. (Years later, I learned that he’d become a successful motivational speaker!) Through the internet, I established bonds with other SMA families, met a new best friend, and read more about SMA than I cared to know.

With nothing to lose, Randy and I researched alternative treatments. At the end of the first day of using various supplements, I witnessed very subtle improvements in Jeffrey’s movement, crying, and head control. Although these minute changes would likely go unnoticed by a casual observer, I squealed with delight.

I likewise basked in the small interventions on our behalf: being placed on the prayer list of 100,000 Gold Wing motorcycle riders; being mentioned at a convention of 2,000 alternative medicine practitioners; and receiving cards, emails, phone calls, visits, and other prayers. Collectively, it was a tsunami of support.

But despite our fervent prayers and determination to outwit SMA, the active-duty portion of our SMA assignment ended before Jeffrey turned 6 months old. The blessings of having forged indelible friendships and having gained a greater appreciation for the power of faith and prayer continue almost three decades later.

Cleaning up

The top of the little mountain on our property is home to Jeffrey’s resting spot, adjacent to an old cemetery. After Hurricane Helene brought destruction to North Carolina’s mountainous region last September, our area has been slammed again with multiple storms. A recent ice storm transformed Jeffrey’s sanctuary into something resembling a war zone.

Initially teary and overwhelmed upon seeing the shambles, I returned the following week armed with two rakes, serious limb clippers, and ample determination. So far, I’ve managed six days of therapeutic cleanup in perfect weather, and it’s looking hopeful!

While working last week, I spied a single dandelion basking in the sunshine. My husband is a beekeeper, so I was pumped to see the early pollen potential. I was equally delighted to see a daffodil blooming at Jeffrey’s spot. The turkey feather I noticed after picking up a haphazard pile of limbs was the proverbial icing on the cake. Along with spring comes hope, even if it’s in simple packages.

Boy, how we’ve missed you, spring.

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.