Holiday memories, both sweet and bitter — and bittersweet
Holidays like Christmas can be rough for SMA families who've lost children
My days growing up in Fort Worth, Texas, are chock-full of fond memories, like waiting in line at Mrs. Baird’s Bakery to talk to Santa.
He was the real deal, not some measly helper. The heavenly aroma of bread baking was proof that Mrs. Claus was bustling in the kitchen as the mister listened patiently in the crisp air to endless requests.
Each Christmas Eve, my younger brother, Paul, and I would eagerly leave a snack for Santa. And each Christmas morning, we’d jump up earlier than we had the previous year, until our folks proclaimed that 1 a.m. was too early.
It didn’t matter what time we’d get up, we’d squeal at the things Santa brought and read the notes he’d left behind. These were legit and written in Santa’s neat “blocky cursive” penmanship. I still have some of these treasured notes in my old scrapbooks.
An example of the “blocky cursive” in the treasured Santa notes Helen Baldwin received as a child. (Photo by Helen Baldwin)
Paul and I grew up and started our own families, moving far from Mrs. Baird’s Bakery.
The obnoxiousness of commercialism has meant that Santa and baby Jesus often join inflated turkeys, ghosts, and goblins in big-store displays, but “‘Tis the Season!” continues to foster a general sense of joy, generosity, and optimism for many folks. For others, however, it’s a season of memories of those no longer here.
Surprises and Secret Santas
My husband, Randy, and I moved to Columbia, South Carolina, in 1985, and then to the mountains of North Carolina on New Year’s Eve 10 years later. Life was good, if not sane, for us and our two children, Matthew and Katie. There was a substantial blizzard the week after our arrival, squirrels flying into the dining room of our old farmhouse, inclement weather that toyed with school schedules until March, and plenty more. It was never dull.
In the fall of 1996, “never dull” took on new meaning with an unexpected pregnancy. Jeffrey, our beautiful, dark-haired surprise, arrived on the morning of May 18, 1997. His easygoing nature from the get-go made adjusting to a family of five almost effortless.
The diagnosis of spinal muscular atrophy (SMA) two months later more than made up for that.
Our bonus baby snagged his wings on Nov. 4, less than six months after his arrival. After Jeffrey’s service, Randy and I took Matthew and Katie to Pigeon Forge, Tennessee, for a few days. Randy and I functioned on autopilot, though we appreciated watching the kids have fun, reassured that our family would be OK.
Thanksgiving passed quietly and as well as it possibly could, thanks to our phenomenal family, but Christmas was approaching and my heart was feeling the punch. I had little incentive to do anything remotely festive. While several Secret Santas from Matthew and Katie’s school rode to the rescue, what eventually helped most was knowing that Jeffrey was celebrating in the perfect place with the reason for the season, safe and free from the clutches of SMA forever. Knowing that still helps the most, actually.
Holidays aren’t joyous for everyone
Holidays like Christmas are especially rough for SMA families who’ve lost children and there have been several losses and scares in the SMA community over the past few weeks. SMA doesn’t have a “safe” season, but this particularly catastrophic period for respiratory issues is making for a terrifying reality for families.
Those dealing with SMA are not the only ones enduring heartache at this time of year, of course. Fellow BioNews columnist Elizabeth Hamilton writes about her daughter’s loss of abilities due to Friedreich’s ataxia. Their daily routine is challenging enough, but the family’s holiday plans must be amended to accommodate her growing weaker.
If you know a family who could use some kind of boost, think about providing it. The options are wide and varied, depending on the circumstances: a visit, a phone call, a note in the mail, a gift card, a home-cooked meal, a lunch date. Maybe even being a Secret Santa.
“Blocky cursive” doesn’t require much practice. Promise.
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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