SMA and the Big Sister

If our daughter, Katie, had arrived on her due date, I’d be writing about her birthday instead of her decision to hold off a few days — eight, to be precise, but who’s counting? I’ll tell you who was counting back then — I was.

I was teaching in Columbia, S.C., and because our much-anticipated sweetheart didn’t come on time, I lugged both of us to numerous workshops in the oppressive heat and humidity that defines the South.

What did spark some action was our attendance at the annual football jamboree, kicking off another season for area high schools while their respective bands battled in the stands. My husband, Randy, in his first head coaching stint, directed plays and hoped he wouldn’t be summoned to trade the sideline on the field for one in a delivery room.

It was a rowdy evening of whistles and the BOOM!!! BOOM!!! BOOM!!! BOOM-BOOM!!! of the drums. The car was packed with hospital essentials in the event our new bundle made some noise as well, but the prepping was in vain. After the jamboree, I waddled back to the car with 3-year-old Matthew in tow and drove home. My folks, at the ready for whatever, did the same.

The excitement of the evening, however, had apparently motivated our little one after all. A very few uncomfortable hours after I arrived home, my own BOOM-BOOM!!! snagged my attention. Randy zoomed us to the hospital and was handed a set of scrubs. Fifteen minutes after we signed in, we became the ecstatic parents to a beautiful baby girl. I didn’t know the man snagged from the hall who delivered her, but at least he wore a white coat.

Katie’s eventful entrance was just the beginning of a soon-to-be three decades of keeping us entertained and on our toes.

Fast-forward seven years, when news broke that another baby would be joining our family. Matthew, 10, mortified at the thought that I might go into labor while volunteering in his classroom, likely prayed that I would give birth anywhere but there. Katie, who couldn’t contain her enthusiasm, likely prayed that we’d have a baby while I was helping out in her class. 

Baby Jeffrey joined our family two weeks ahead of schedule, a fantastic second choice for his big sis. Despite his arrival on a Sunday morning, school hadn’t let out for the summer, so his doting sibling could show him off.

Katie and Jeffrey. (Photo by Helen Baldwin)

Our only daughter may have been a typical pesky little sister at times, but she was a perfect big sis. She was a natural, from holding and soothing our tiny newborn to reading to him. She would have gladly sacrificed school to tend to him all the time.

Taking her job seriously. (Photo by Helen Baldwin)

Two months later, a BOOM!!! of a different kind — Jeffrey’s diagnosis of spinal muscular atrophy (SMA).

This unexpected jolt left us all reeling. We cried, prayed, and regrouped as best and as quickly as we could. Katie continued her self-assigned role as second mama to her favorite little brother.

The next (and final) 3½ months tested our family. Randy and I kept Matthew and Katie informed about Jeffrey’s status as much as we felt they wanted and needed to know. When I had to focus almost completely on Jeffrey, Matthew and Katie demonstrated impressive maturity as SMA took its destructive toll.

Katie somehow retained her sense of humor, thank goodness, as humor was a vital balance to everything else. The compassionate counselor at school checked on Matthew and Katie to make sure they were doing OK. She said that Katie proceeded to explain SMA — and its ramifications — to her.

Not one to shy away from responsibility or adversity, Katie took our SMA assignment and grew from it. Sometimes her decisions may have increased my gray hair population by a little (or a lot!), but I have most definitely learned from her. She is a bright, beautiful, industrious, compassionate, and adventurous young woman with a delightfully creative sense of humor and an ideal match to her husband, Paul.

Happy birthday a few days early to Favorite Daughter, a perfect big sis to a perfect little guy.

Grown-up Katie. (Photo by Katie Fischer)

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.