The excitement of baby news for novice grandparents rivals that of the soon-to-be parents. Giddiness pervades the pondering. Who will the baby look like? What strengths and interests will the little one inherit: academics, arts, sports, creative thinking … common sense? Names, nursery decor, baby projects, and pregnancy updates consume conversations for months.
What tends not to come up is what if.
My husband, Randy, and I were content with our family of four, which included 10-year-old Matthew and 7-year-old Katie. We scrambled to keep up with obligations in multiple areas and ventured nowhere near the market for another baby.
God had other plans.
The comic relief in breaking baby news in our mid-40s helped offset the sheer disbelief. My folks, “Nana” and “Papa” to their four grandchildren, operated the family lodge at the time. I helped out regularly. My parents retrieved their jaws from the floor at the baby announcement, never voicing a concern as to how they might manage the bustling business mostly on their own for a while.
Jeffrey arrived two weeks early, three days after my 43rd birthday. Both extended families were elated, but only my folks lived close enough to enjoy a plentiful dose of their nearby grandchildren. And that they did. Lodge duties kept Mom and Dad hopping, and everything else kept the rest of us hopping. But we settled into a routine, and almost thrived on the circus of life.
And then the chaos — the familiar chaos, anyway — did a 180.
The diagnosis of spinal muscular atrophy (SMA) two months after Jeffrey’s birth left no stone unturned emotionally, mentally, spiritually, or physically. It left us all reeling.
My physician brother, Paul, had examined Jeffrey the day before we learned the diagnosis and called our folks to let them know what he suspected. That conversation was surely a whopper, but it gave Mom and Dad time to regroup before our daunting assignment commenced.
Dad, exceptionally attentive to his children and grandchildren, drove the five miles to our house as often as he could to bring lunch, to help Randy with various projects, or just to “check.” As our assignment progressed, he worried that Jeffrey was in pain. He would pop over at random times to witness firsthand that his beautiful grandson was as comfortable as I’d claimed, and that his firstborn (me) was still upright. I was … usually.
Outwardly, Mom never skipped a beat. Despite the constant, often-frantic demands of the lodge, she came over to help almost daily. While her visits enabled me to get a few things done, it also allowed her to dote on her youngest grandchild.
Jeffrey loved lap time with Nana, and vice versa. They played games (Nana’s “blue brush airplane game” was a favorite) as he basked in her animated TLC.
Nana, an extraordinarily gifted musician, found time to prepare a collection of songs for him titled “Dreams for Jeffrey.” He and I both relaxed with its soothing lull and listened to it “infinity” times. (Interesting note: As easily as I could replay the entire collection of songs in my head with Jeffrey perched in my lap, I couldn’t recall even a portion of a single song for months after his death.)
The biggest source of encouragement came from other SMA families, particularly those whose babies had type 1 and those who had lost a child. Mom’s willingness to exchange experiences with other grandmothers led to a few email connections. Years later, I heard how helpful that had been. I imagine they discussed the excruciating double whammy of watching your children having to consider their own children’s funeral arrangements.
Throughout our assignment, my folks stayed sturdy. Papa donned his wings a few years after Jeffrey snagged his, and it’s easy to envision them together.
Nana, who was the age I am now during our Jeffrey assignment, recently celebrated her 87th birthday! She doesn’t see well, but she wastes no time searching for this column and usually has read it before I’ve received notification that it has been published.
Life has handed Randy and me a few more double whammies over the years. Matthew’s daughter, Clara, was diagnosed with Beckwith-Wiedemann syndrome; his son, James, had an alarming croup emergency this year; and Katie’s beloved dog Mae endured a nightmarish respiratory crisis before crossing the rainbow bridge.
I imagine there will be plenty more character-building opportunities. A trio of stellar teachers, Jeffrey and his Nana and Papa, have prepared me as much as possible for taking on the what ifs.
And, hopefully, living up to the “grand” in grandparent.
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.
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