Our family has some generous gardening friends. One such friend keeps us spoiled with her garden goodies regularly. She has delivered to our porch zucchini, beans, lettuce, garlic, and fresh eggs.
Oh, and tomatoes.
Our baby Jeffrey’s routine check at two months was anything but routine. My physician brother, Paul, had examined Jeffrey the day before, finding a dull-sounding lung and no reflexes. He explained to my husband, Randy, and me that the pediatrician likely would refer Jeffrey to a neurologist.
The first pediatric neurologist to return our doctor’s phone call the next morning was 90 miles away. To say that the conversation during the ride was sparse is an understatement; together, Randy and I uttered no more than a handful of sentences. Paralyzing fear of the unknown will do that.
For hours after our admittance to the hospital, which is a teaching facility, future doctors examined Jeffrey and questioned us in their quest to identify our dilemma. No one offered any answers, though, until that evening, when the pediatric neurologist came in.
“Spinal muscular atrophy,” he explained. Jeffrey had a severe case of the most severe form, type 1.
Before we had a chance to digest those words, the doctor shifted to the prognosis, an even bigger sucker punch. Most children diagnosed with this form of SMA didn’t make it to kindergarten.
In 1997, there was nothing positive coming from the medical experts, so we found our own bright spots in this mother of a life assignment. Jeffrey was the brightest spot. He wasn’t the only one, though. Some of the others just couldn’t materialize until after his death.
That playing field is in a completely different league.
The blessings during our active SMA assignment flowed in various capacities from family, friends, and folks we’d never met. Witnessing the miracle of faith and prayer and learning to lean on others are lessons best learned when the going gets tough. The going was tough, but so were we. We tried to make the most of those lessons.
The first days and weeks after Jeffrey’s death were surreal. Our other children, Matthew and Katie, returned to school, and Randy and I returned to some semblance of our former routines.
When we least expected it, the first sign appeared — the first one that we noticed, anyway. After a few weeks without our sweet little guy, Randy, Matthew, Katie, our dog Nellie, and I walked up the little mountain on our property to Jeffrey’s special spot on top. It was a snowy day, with brutal winds whipping the snow (and us) around. It wasn’t a particularly pleasant hike, but we’d decided earlier that we’d walk up, and we weren’t backing out.
As we left the trail and set foot on the clearing, the snow stopped abruptly, and the clouds parted. With unexpected sunny, blue skies, we walked in awe to Jeffrey’s spot for a brief prayer. When we were satisfied with the visit, we walked to the edge of the clearing. As we set foot on the trail heading back down, the skies closed up, and the gusty snow picked up as if it had never stopped.
I don’t know what signs we may have missed before that one, but I’ve tried to stay alert since then. I haven’t been disappointed.
My parents moved down the road from us in the fall of 2005. One of my father’s dreams, besides finally enjoying real retirement, had been to plant a garden.
A few short months later, Dad was diagnosed with “masses.” Despite declining health, he managed to call a neighbor and asked him if he would mind plowing a small garden. Our neighbor dropped what he was doing and obliged, and Randy and I planted the usual: zucchini, squash, peppers.
Alternative treatments kept the grueling side effects at bay and enabled Dad to take a few peeks at his garden, but they couldn’t keep him here. He was gone by the end of June 2006.
In extraordinary fashion, it seemed Jeffrey was waiting for his beloved Papa, eager to show him the ropes.
The Papa Garden continued to thrive, although the tomatoes refused to ripen. As the first frost approached, I gave up and harvested the tomatoes, all still stubbornly green, taking half and leaving half for Mom.
Three days later, I spied three red tomatoes on our counter! I excitedly chose one, washing it and thinking about Dad, his garden, and what he and Jeffrey were doing.
My jaw dropped when I sliced open the tomato.
When I regained my senses, I knew Dad was doing the same thing he’d been doing for so many years before — reminding his family how much he loved us.
And assuring us that he’s not so far away.
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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