We’re Not in Kansas Anymore

My husband and I moved into our old farmhouse in the mountains of North Carolina as 1995 wound to a close. Big-city Texans in a previous life, Randy and I were giddy at the thought of a quiet place void of traffic, crowds, mosquitoes, and oppressive summer heat. Our children — Matthew, 9, and Katie, 6 — were much less enthusiastic about our new rural life and a school change until a massive blizzard a week after our arrival kicked off a winter with two months of delays, early dismissals, and no-school days.

One day, Randy and I hiked up our new little mountain and stumbled upon a big surprise — an old cemetery. Almost 30 stone markers bore scrawled etchings, and a single commercial marker identified a 5-month-old baby. I couldn’t imagine losing a baby.

Cue ominous music.

Almost a year later, Randy and I were stunned to learn we’d be welcoming a third child. The initial shock morphed effortlessly into eager anticipation, although I couldn’t seem to shake a particularly funky fogginess. On May 18, 1997, three days after my 43rd birthday and two weeks before his due date, Jeffrey Thomas Baldwin made his appearance. He was perfect! Randy expressed alarm at his abdominal breathing, but no medical person seemed concerned. Besides, Randy had always been a worrywart. My lingering fog rendered me oblivious.

I considered Jeffrey’s extraordinarily easy demeanor as a reward from God for agreeing to take on a newborn in middle age. Our beautiful little guy, the spitting image of his older brother, was always content. Even when he was hungry or tired, he merely whimpered. He had a delicate sneeze and cough, and never gave the slightest indication that he’d ever try to outmaneuver a diaper change — or anything else, for that matter. He usually fell asleep while I nursed, which I attributed to my rich milk and the hypnotic lull of ceiling fans. Jeffrey adored his older siblings, and vice versa.

For seven weeks, life was full: a new baby, baseball, coaching, swimming lessons, outpatient surgery, a new business. We fell into an almost sane groove and even entertained Randy’s mother for a couple of weeks.

And then.

On July 7, the mailman ran over one of our dogs. Randy rushed Duffy to the vet’s office while Matthew, Katie, and I discussed death, heaven, and God’s reasons for allowing bad things to happen. By the time we learned Duffy hadn’t made it, we were as braced as possible.

On July 13, my doctor brother’s birthday, he and his family came to visit. Unbeknownst to me, Randy had asked Paul to bring a stethoscope to listen to Jeffrey’s breathing, which still alarmed him. Me? Not so much, thanks to my funk, although the fog began dissipating that day. I was suddenly terrified at what Paul might find, and it was obvious from the look on his face after the exam that Randy’s concern and my newfound fear had been warranted. Paul found no reflexes, and one of Jeffrey’s lungs sounded dull. Knowing Jeffrey’s wellness visit was scheduled for the next morning, Paul said we’d probably be referred to a neurologist.

My prior teaching experience with kindergarteners who had multiple disabilities, including orthopedic challenges, provided me with myriad opportunities to encourage and appreciate all of Jeffrey’s capabilities and accomplishments. I was convinced that God had put me in that particular teaching position for a purpose. This purpose. I spent that night persuading my optimistic self that we could handle anything … and then I made a list of what Jeffrey was and was not doing. Seeing it all in print was numbing.

With my heart on the brink of implosion, I panicked that the experience with Duffy and the conversation with Matthew and Katie a week before had been some sort of a rehearsal.

Any remnant of the protective fog was officially history.

On July 14, the pediatrician referred us to a pediatric neurologist at a teaching hospital, where we headed immediately. That evening, following a steady stream of puzzled student doctors examining our baby, a neurologist examined Jeffrey and told us that he felt confident (“I’m rarely wrong”) we were looking at spinal muscular atrophy — SMA. Just as Randy and I were trying to process whatever the heck that was, he slammed us even harder with the prognosis of death by the age of 4, a number whacked in half the next morning by a geneticist.

Our assignment as SMA caregivers lasted less than six months, when Jeffrey passed away.

Thanks to an invitation by fellow SMA News Today columnist Kevin Schaefer, I’ll be sharing our experiences with “old-school” SMA life, short as ours was, and the aftermath of our assignment as the earthly family of a pretty special little angel. If you ever have questions, please don’t hesitate to ask!

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.