Connecting with SMA families and grieving the loss of a child

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by Helen Baldwin |

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In the North Carolina mountains, spring signifies random weather: gorgeous blue skies, rain, wind, thunder, snow, and freeze warnings — sometimes all on the same day. Buds and blossoms are exploding, and the bees are happy.

We noticed the annual duck visitation in the pond and spied the first hummingbird at the feeder! The birds are chirping and the frogs are croaking. Our grandchildren have begun games in their respective sports (Clara in soccer, James in T-ball), which always provides easy entertainment.

Life is busy as always but good (unlike the water event a year ago, but that’s another story), and I felt confident that I could build a column around the optimistic vibes in our little nook.

And then I checked my emails.

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A surprise and a shock

Our third baby, Jeffrey, was a surprise. His arrival on May 18, 1997, wasn’t nearly as dramatic as the “I Didn’t Know I Was Pregnant” women who give birth as they sit down to order tacos. (OK, I may have made up the taco part, but you get the gist.) In middle age, my husband, Randy, and I were considerably more prepared for almost any other kind of surprise.

But all of this paled in comparison to the shock we received two months after Jeffrey’s birth. “Jeffrey has a severe case of the most severe type [of SMA],” the pediatric neurologist told us. “There is no treatment or cure.”

Our active journey with SMA was brief. We said goodbye to our sweet little guy a mere 113 days into our very special assignment.

Bonding and sharing Jeffrey’s story

Days after the diagnosis, our internet was set up, and my connection to fellow SMA families took off. Some had already lost a child, some were in our shoes, and others had been dealt the SMA hand more than once. Bonding was instant.

After Jeffrey’s death, I continued my contact with these families, primarily through SMA message boards. We even had the good fortune of meeting other families at a gathering of the new North Carolina chapter of what was then called Families of SMA (now Cure SMA Carolinas), founded by the parents of fellow columnist and BioNews Associate Director of Community Content Kevin Schaefer. Kevin’s mom, Cindy, has remained a steadfast friend for almost 26 years!

I wrote a book called “The Jeffrey Journey” about our brief assignment. A special dedication included as many names as I could find of those who had SMA and those who had passed on. I sold a few copies and gave away many others to share Jeffrey’s story.

Changes in connections, but still writing

As the years passed and life became fuller in myriad ways, my connections to newly diagnosed SMA type 1 families gradually faded away. With the introduction of exciting treatments providing legitimate hope, I learned through the grapevine that “new” SMA families tended not to want to hear from those of us who had a different kind of experience with SMA.

Keeping Jeffrey’s memory alive through this column, courtesy of BioNews, the parent company of this website, has been a godsend. I don’t know how many folks are reading this, but I consider writing cathartic and greatly appreciate the continued opportunity to do so. I’m in stellar columnist company, too!

With the exception of this column, there haven’t been many chances lately to discuss Jeffrey’s death.

Until I opened that email.

Filling out a survey

Cure SMA had emailed an invitation to participate in a survey. I receive emailed notifications regularly that don’t apply to me, but this one snagged my attention. It was for those of us who had lost children or other loved ones due to SMA.

The survey expired the following day, so I did it right then and there. I stumbled upon several questions and realized that my answers could potentially skew the results. After all, I’ve had almost 26 years to process Jeffrey’s death and have remained active throughout the years in a quest to share his story. I sure wouldn’t have answered the same way if it had been two weeks, two months, or even two years.

I left some questions blank. While I could have responded yes to them, it wasn’t due to grief over Jeffrey’s death. I was thankful there was a space provided at the end for additional comments, as I had plenty to add for clarification. The survey folks may still be reading.

Looking back: The healing process

Not shockingly, the SMA community has suffered several tough losses lately, and I imagine there are more. The survey took me back to those fateful final few weeks of Jeffrey’s life, his death, and the months of healing over a lot of years. I ache for the families new to losing a child to SMA (or anything).

Grief is excruciating in its unpredictability. Although most of us function satisfactorily at some point after the devastating loss of a child, the potential random moments are never far away. Some days, they’re all over the place.

Sorta like spring in the North Carolina mountains.

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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