When fate tested our theory that things happen for a reason
The spring of 1997 arrived with a bang. Initially stunned at the revelation of an unplanned pregnancy, my husband, Randy, and I warmed up quickly to the baby idea and considered ourselves as prepared as possible.
Our son, Matthew, who was 10 years old, knew enough about the birds and the bees to be mortified. As the countdown to the June 1 due date commenced, I experienced Braxton Hicks contractions. Our extremely self-conscious firstborn promptly imagined with horror me going into labor as I volunteered in his classroom.
Our daughter, Katie, then 7, was Matthew’s polar opposite. She squealed at the baby news! She likely plotted to order popcorn for the class during the (hopeful) delivery during my volunteer stint in her classroom.
Meanwhile, Randy was dealing with an increasingly unbearable teaching/coaching situation at his school. The school board’s meeting to discuss his future was open to the public, which responded with so much positive support for Randy that a subsequent meeting was held just for the vote. It was actually a relief to learn that his contract wouldn’t be renewed. However, his involuntary removal sparked the need for an alternate income plan.
Although we’ve always believed there’s a reason for everything, we’d never have guessed that Randy would become his own boss because he’d be needed at home. And we certainly wouldn’t have believed why.
A new job idea sparked by … a skunk?
In the middle of an unusually mild March night in 1996, our two dogs, Nellie and Duffy, raced out of the house to chase a skunk. Reeking, the dogs rushed back inside, rubbing “skunk” all over the carpet. We managed to bring the malodorous scent down a notch after a few tomato juice baths, but we feared the carpet was hopeless.
Randy set out the following morning in search of a dry-cleaning machine in an effort to salvage the carpet. Incredibly, one was available for rental. If the carpet wasn’t wet, we wouldn’t need to dry it out with ceiling fans and open windows in the frigid winter air.
The result was impressive. The following year, as we pondered how to make a living on our own, carpet dry-cleaning seemed like a perfect solution.
On May 18, baby Jeffrey arrived. As we settled into the newborn routine, Randy ordered the necessary equipment and supplies to launch the new carpet-cleaning venture.
Life bustled along relatively uneventfully until July 7, when Duffy was struck by a vehicle. As Randy rushed him to the vet’s, Matthew, Katie, and I had our first conversation about death, heaven, and angels.
I felt confident that the conversation had been helpful when we learned that Duffy hadn’t made it. Incredulously, the same conversation would resurface in just one week. This time, though, it would apply to baby Jeffrey.
A shocking diagnosis clarifies something else
My physician brother, Paul, examined Jeffrey a week later. Jeffrey’s abdominal breathing, present at birth two months before, had raised no red flags to anyone but Randy.
Paul’s expression was somber after the brief exam. He’d found a dull lung and no reflexes, resulting in our consultation the following evening with a pediatric neurologist. Despite me having taught children with various disabilities, the diagnosis was foreign to me: Werdnig-Hoffmann disease, or spinal muscular atrophy (SMA) type 1.
The prognosis: probable death before the age of 2.
Suddenly, we understood why Randy had been plucked from his coaching job: He’d be needed at home for this surreal assignment.
Less than four months later, Jeffrey snagged his wings.
A chapter closes, prompting memories of Jeffrey
In April 1998, five months after Jeffrey’s death, we became bakery/sandwich shop owners in a nearby tourist nook. One couple new to the area came in regularly for breakfast. We learned that Jim, recently retired, was looking for part-time work. The employee we’d hired to clean carpets for us struggled to fit the jobs into his regular work schedule, so Jim stepped in to take his place.
Myriad health issues have plagued Jim the past few years. Last Friday, with new concerns cropping up, he reluctantly admitted that he didn’t see how he could continue cleaning. With equipment almost 30 years old (almost the length of time Jim has worked for us!), we officially hung the “Closed” sign on the business.
Memories of carpet cleaning, the bakery, and Jeffrey rushed back. One of the most indelible memories was of when Randy cleaned the carpet at the funeral home in charge of Jeffrey’s arrangements (whenever they’d be needed), and he bumped into a box with a tiny white casket inside. He wondered if it would be Jeffrey’s. Boy, does that memory still pack a punch.
The bakery was named “The Three Bears,” after Matthew, Katie, and Jeffrey. We shared information about SMA and utilized a “Chuck Your Change for Charity” jar for mostly SMA causes. It was a highly therapeutic life chapter.
Benjamin Franklin proclaimed that nothing in life is certain, with the exception of death and taxes. I think memories when you least expect them qualifies, too.
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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