The 1st Day of School Reminds Us of Life’s Patterns

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by Helen Baldwin |

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yo-yoing | SMA News Today | main graphic for column titled "We're Not in Kansas Anymore," by Helen Baldwin, depicting a blue wave offset by green nature scenes

During my Saturday morning errand run, police motioned the cars in my lane to a halt for commencement of the annual Blue Ridge Brutal. The BRB is a grueling ride for bike enthusiasts eager to push themselves beyond the max. “Not for the faint hearted,” one blurb warns. That’s an understatement.

Route options for the BRB are 56, 72, or 102 miles. All routes include a 20-mile stretch on the stunning Blue Ridge Parkway. Actually, this entire area is stunning. And hilly. Very hilly.

BRB riders insistent on additional self-punishment can also pursue the “Assault on Mount Jefferson,” which is slightly more than 3 miles of climbing over 1,450 feet. Those who succeed must be transported back to the starting point, as cycling down is not allowed.

The Blue Ridge Brutal is aptly named.

And it was aptly timed for the end of a back-to-school week with a few brutal moments and memories.

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Our second baby, Katie, arrived eight days past her due date. Once she decided to inject some serious spunk into the family, however, she didn’t dally. The labor and delivery folks, my husband, Randy, and I had a whopping 10 minutes to get our collective act together after scoring a delivery room. The nurse’s “DON’T PUSH!” was an impossible command to follow. Wisely, she quickly snagged someone in a white coat for the delivery.

Katie’s memorable entrance was just the beginning of her zest for life. A few years later, as her older brother, Matthew, tried to brace himself for kindergarten, Katie insisted on her own backpack. She wore it proudly, as if it would teleport her right into class with Matthew.

Her brother would have generously offered his spot in a heartbeat if he could have worked out a few kinks.

Even though it took years before Matthew was able to attend school agreeably and with a relatively calm stomach, he was a model student. He was smart, conscientious, and responsible. He was also extremely sensitive.

Last week, Matthew and I delivered James, his son and my grandson, to preschool for his first full day since lockdown started in March 2020. I remained in the car with James’ big sis, Clara, who would be dropped off next for her first whole day of kindergarten. Like her Aunt Katie, she was giddy about school.

It took Matthew a while to return to the car. Unsurprisingly, James had not been happy at being left behind. His wailing and begging to leave was grueling for his daddy.

Matthew opened the car door, sat in the driver’s seat and mulled, teary-eyed, over what had just transpired. And then the dam broke.

Randy and I faced relentless tough decisions following our baby Jeffrey’s SMA diagnosis. Likewise, Matthew and Jill, our daughter-in-law, have faced tough COVID-19 decisions regarding vaccinations, masks, school (in-person or virtual), extracurricular activities, etc. It might not have been such a predicament if Clara hadn’t been diagnosed with Beckwith-Wiedemann syndrome and wasn’t still at an increased risk of organ cancer.

In addition, James’ scary episode of croup that wreaked havoc on his respiratory system a little over two years ago remains fresh. Matthew and Jill have perused data and options until their eyes crossed; James’ frantic attempt not to be left “alone” was merely the proverbial icing on the cake.

The moment was brutal and sparked a return of a few still fresh memories of my own.


After Jeffrey’s diagnosis at Brenner Children’s Hospital, Randy and I somehow collected enough wits to drive 90 miles home and reveal some of the essentials of the visit to Matthew, Katie, and my folks.

I managed to eke out some sort of explanation of our new assignment that I hoped sounded sufficiently (or even remotely) optimistic. As Matthew, then 10, crawled into bed that night, he had questions.

He’d paid attention to what I’d said and filled in the blanks at what I hadn’t. He asked about the progression of SMA, and I answered simply and honestly. When he’d heard enough, he began sobbing. I would have joined him if I’d had any tears left.

It was a stark realization of what SMA and its devastating prognosis of early death meant to our family, minus some essential details, like how and when. Not to mention why.

And it was brutal.


By the time school started for Matthew and Katie, less than a month after our introduction to SMA, we’d all adjusted as well as possible. Both school kiddos had mixed feelings about returning to school. The thought of some semblance of normalcy was appealing, but not so with the worry that something could happen to Jeffrey while they were away. And then what?

Jeffrey wailed on that first day. Like James, he apparently didn’t want to be left behind, either.

school  SMA News Today  The columnist's children Katie, Matthew, and baby Jeffrey post on their first day of school in 1997. Matthew is wearing a "No Fear" T-shirt.

Katie and Matthew may or may not have been ready for school in 1997, but it’s a big no for baby Jeffrey. Matthew optimistically chose a “No Fear” T-shirt. (Photo by Helen Baldwin)

Meanwhile, the flip side of “brutal” may well be “giddy,” which is exactly what Clara is at being a kindergartener. Just like Katie.

And that’s anything but brutal.


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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