Life Is Like a Box of Chocolates … and a Yo-yo

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by Helen Baldwin |

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I’ve only seen snippets from the 1994 movie “Forrest Gump.” I know a couple of its famous lines, though: “Life is like a box of chocolates. You never know what you’re gonna get.”

I love surprises, chocolate and otherwise! Usually.

In the mid-1980s, my husband, Randy, and I traded our Texas stomping grounds for Columbia, South Carolina. He coached high school football, and I taught kindergarteners at Brockman, a self-contained school for students with orthopedic and multiple handicapping conditions.

We moved to Lenoir, North Carolina, a few years later, and when our family purchased a lodge on the Blue Ridge Parkway, we headed up the mountain.

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A surprise pregnancy coincided with a new football coaching job for Randy that quickly spiraled downward. The flip side to that miserable year was a slightly early appearance from our sweet third baby.

Life is also like a yo-yo. The “down” from Randy’s job situation was certainly countered by the “up” from Jeffrey’s arrival; however, I didn’t fully connect the dots until SMA upended our life.

***

Raging pregnancy and postpartum hormones defy description. From vivacity to exhaustion, conviction to doubt, sanity to lunacy, sleep-deprivation to more sleep-deprivation, it’s a perpetual yo-yo. It can apparently “boing” on forever.

The most intense yo-yoing for me occurred in 1997. My physician brother, Paul, examined Jeffrey on July 13, the day before his scheduled two-month well-baby checkup. The findings upon Paul’s brief exam included no reflexes and a dull-sounding lung.

The somber expression on Paul’s face said plenty, although details were unknown. He told us that we’d probably be referred to a pediatric neurologist. To make sure no time was wasted, Paul called our doctor before the appointment the following morning to relay what he’d found online.

Wisely, Paul said nothing to me. And since Randy and I didn’t have internet, I couldn’t snoop around for myself.

The yo-yo would have spiraled straight to the bottom of the sea.

***

Randy and I said nothing on the way to the appointment with a neurologist the next day. He drove in silence with potential scenarios running through his head, while others raced through mine. I thought of Brockman students with similarities to Jeffrey and quickly rationalized that we could deal with a wheelchair and whatever else. By the time we arrived, I felt like an inflated balloon about to burst with optimism!

The neurologist popped the balloon that evening. The likely diagnosis of SMA was followed by the prognosis of death by age 2. Utter devastation.

Boing, boing, gone.

***

The adjustment to our hefty assignment was bolstered immensely by connections to other SMA families, primarily through Families of SMA (or FSMA, now Cure SMA). I also summoned my former Brockman ties for prayers and information about SMA.

LaMondre Pough attended Brockman during my teaching stint. He wasn’t in my class, but he was still a favorite student. After learning about Jeffrey, he called. He asked if I knew that he had SMA.

I did not. Regaining my composure, I felt the powerful boost his soothing voice provided.

I would soon be privy to another such boost.

***

SMA’s wrath wasted no time kicking up its destructive heels. The elation at any glimmer of improvement with Jeffrey was no match for the brutal realization that we couldn’t stray far from the suction machine. The genuine hope before a last-ditch consultation with a pulmonologist turned to panic when things went seriously wrong after just minutes with the doctor. On several occasions we braced for what we were sure was the end of Jeffrey’s brief stay, only to find ourselves enjoying some bonus calm time.

And vice versa.

The proverbial yo-yo often lay on the ground beside its lifeless string … and a big box of chocolates.

***

I met Cindy Schaefer on the FSMA message board in August 1997, after her family’s return from the annual conference, and the rest, as they say, is history. I’ve had some great friends in my years, but our instantaneous, extraordinary friendship still possesses a uniquely comfortable component 25 years later. We met in person mere weeks after Jeffrey snagged his wings. That’s when I met Kevin, her son with SMA.

Fast-forward over two decades. Kevin Schaefer is now associate director of community content at BioNews (SMA News Today’s parent company) and a fellow columnist. I’m still honored that he invited me on board.

Kevin, Cindy, and other members of their family attended the recent Cure SMA’s annual conference this month. Cindy couldn’t wait to share a photo upon their arrival.

yo-yoing | SMA News Today | photo of Helen's former student LaMondré Pough at left, with Cindy Schaefer at right, in a large banquet room.

Two of Helen’s favorite people at the recent Cure SMA conference: LaMondre Pough (from Helen’s teaching days) and Cindy Schaefer (whom Helen describes as a lifesaver and soul sister since Jeffrey’s diagnosis). (Courtesy of Kevin Schaefer)

SMA News Today has enabled Kevin’s and LaMondre’s paths to cross. It’s a fitting match for these two shining stars! Kevin had interviewed LaMondre on his podcast, but they’d never met in person until this conference. What a joy to see them together!

yo-yoing | SMA News Today | photo of Kevin, left, and LaMondré, in their wheelchairs amid a crowd

Kevin Schaefer, left, with LaMondre Pough at the recent Cure SMA conference. This was their first in-person meeting, and a surprise at that! (Courtesy of Kevin Schaefer)

My life yo-yo is currently up — maybe all the way to heaven.

That box of chocolates, however? History.

Burp.


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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