Why I don’t share the ‘F-bomb SMA’ attitude

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by Helen Baldwin |

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For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but as I don’t spew profanities, I wouldn’t have said it or announced it on my T-shirt.

Call me old-fashioned … or just old.

It didn’t take long for the same slogan frenzy to target other maladies, including SMA. “F-bomb SMA” began appearing on social media, apparel, decals, tattoos, and more.

I remained mum.

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Life as we knew it … poof!

By the end of summer 1996, my husband, Randy, our children, Matthew and Katie, and I had adjusted to almost a year of rural life in the North Carolina mountains. Sufficient bumps in life kept us alert, but rarely was anything overly calamitous.

And then came fall. Randy scrambled in his new coaching and teaching job while I helped out at our family’s lodge and volunteered at Matthew and Katie’s school. Randy’s schedule and mine rarely matched until we collapsed at night, so the positive pregnancy test was quite the shocker. And that is quite the understatement.

Jeffrey arrived in mid-May 1997, three days after my 43rd birthday and two weeks ahead of schedule. He was beautiful, easy, happy, and strong!

Within weeks, “strong” petered off the list. Our bonus baby was diagnosed at 2 months with a severe case of the deadliest known form of SMA, type 1.

Despite our unwavering efforts, our sweet little guy snagged his wings less than four months later.

On being an optimist

With the exception of trying to fit into old pants, I lean toward optimism. That doesn’t mean I’m never pessimistic or downbeat. Thankfully, however, I inherited a bounty of good-naturedness and conviction that things would fall into place as they should. My late mother dubbed me a Pollyanna.

That might be a bit annoying to others at times, but it’s been a godsend to me. If I’m not genuinely upbeat, I often fake it until things truly do look better. I’m grateful for that, as I had to do a lot of regrouping after SMA knocked our props away.

“F-bomb SMA” didn’t cross my mind, though.

Why not?

SMA — a blessing?

There are blessings in adversity.

I’ve had this discussion before. Some probably think I’m not quite right in the head, while those who cling desperately to God’s hand while dangling over a proverbial precipice understand completely.

SMA wasn’t adversity. It was outright devastation. We’d just been informed that our baby — an unplanned gift from God — had a rare, insidious disease that would likely snuff his life within a couple of years.

I didn’t grasp God’s possible rationale until I realized a few things.

The biggest epiphany came in the midst of fervent prayers that shifted gradually from “Please save Jeffrey!” to “Please help us stay strong!” to “Please take him!” Repeatedly and convincingly, the power of faith and prayer propelled us over numerous rough patches.

Because of our SMA journey, we were also awakened to comforting, mind-boggling signs.

We learned how laughter counters despondency. Matthew and Katie unwittingly manifested a perfect blend of concern over their baby brother’s well-being and innocent humor. While outsiders wondered how we could possibly find anything remotely humorous, we needed to do just that on occasion to release unfathomable stress.

Oh, the people you meet

Another crucial discovery was the importance of the friendships and instant camaraderie that I would’ve missed without SMA. And, oh boy, would I have missed them.

Others understand about friendships. Sherry Toh and Brianna Albers are fellow SMA News Today columnists and best friends. Sherry recently penned a heartfelt tribute to Brianna for her encouragement, determination, and help, especially with getting her started on Evrysdi (risdiplam), a beneficial SMA therapy not readily available to Sherry in Singapore.

Is ‘F-bomb SMA’ warranted?

The lead of my columnists’ group, Halsey Blocher (who has SMA), devoted a column to whether having a disability was a good or bad thing — something I’d discussed with parents of a few of my students during my teaching days. Responses varied, with one parent insisting that she’d never wish that her child had been born without a handicapping condition. I didn’t understand the sentiment until some years later.

Our brief SMA assignment afforded us a closer connection to God. I made invaluable friendships and “met” extraordinary folks I would never have met otherwise. And those signs!

Not everyone experiences the same SMA journey. Many face intense, frightening crises with traumatic medical interventions for years. Remembering Jeffrey’s scary episodes during his brief earthly stay, I can’t imagine enduring years of that. I easily understand if those families want to holler the “F-bomb SMA!” mantra and am not about to stop them.

That said, Pollyanna here prefers focusing on the brighter side.

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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