The power of words — or lack thereof — in our SMA assignment

“Sticks and stones may break my bones, but words can never hurt me.” I don’t know if this adage has retained its clout from my early school days, but surely it’s still familiar.

It came in handy — sorta — when I was in elementary school. During a routine game of four square at recess, an innovative classmate called each of us by the first syllable of our given name.

It was a cinch with “Jo,” “Chris,” and “Shir,” but, hoo boy, when she got to my new name, “Hel,” you can imagine the instantaneous commotion. At once, I was both devil’s spawn and celebrity: “Hel! Isn’t it your time to serve?” “Way to go, Hel-l-l-l-l!”

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I was generally a good sport but detested being the focus of so much attention and the butt of what felt like a taboo joke. I did my best to brush it off, but I wished my name was Ann or Tom.

Words — in this case, my momentary nickname — stung at that impressionable age, as evidenced by the fact that I still recall it after 60 years. I doubt anyone else does.

That’s the power of words.

When things don’t go as planned

With new babies, we shower congratulatory greetings upon the families involved. Unless we hear otherwise, we presume things have gone well and that the baby is healthy. A birth is (typically) a truly joyous occasion!

Parents are understandably privy to much grander hoopla with the first baby than perhaps a third (and beyond), although more than a few shocked faces were revealed when my husband, Randy, and I announced we were having a third (surprise) baby in our 40s. Family and friends were speechless. They weren’t alone.

What do you say when things don’t go as planned?

My family found out when our bonus baby, Jeffrey, was 2 months old.

Randy and I were stunned to learn from the pediatric neurologist that Jeffrey had a severe case of the deadliest form of SMA and probably wouldn’t see his fourth birthday.

Determined to thwart this insidious genetic killer, I wrote letters to any and all acquaintances, asking for prayers and possible information about SMA and alternative treatments. Expressions of shock and sympathy, mixed with sincere interest in joining the fight, poured in promptly. From the announcement until Jeffrey’s death a few months later, the responses were as anticipated: generous and appreciated. Prayers, cards, phone calls, visits, and meal donations helped keep us emotionally, mentally, and physically upright.

Ruthie, one of my treasured teacher assistants during my earlier teaching days, asked how she could help. I told her to keep sending funny cards and her delightful handwritten notes. Humor in words provided a much-needed, albeit unanticipated, balance to the hefty stress generated by SMA’s destructive nature.

Near the end of Jeffrey’s earthly time, we whispered more than talked. Randy and I tried to keep things relatively quiet to counter the increasingly frequent times the deafening suction machine was called into action. Besides, words didn’t come easily as the inevitable inched closer.

Jeffrey took his last breath in my lap while Randy was upstairs on the phone with his mother, and our other children, Matthew and Katie, were sleeping. I carefully bathed our frail angel and dressed him in a beautiful gown my sister-in-law, Jaymie, had made. Randy summoned my parents, Jeffrey’s hospice nurse, and the funeral home, and then we awakened Matthew and Katie.

Relief that Jeffrey was safe from SMA and disbelief at what we’d just experienced unleashed giddy jabbering until my parents and hospice nurse returned home. Words were no longer needed, even if they were to be found.

Sobbing muffled Jeffrey’s service. Afterward, we were able to thank those who had been instrumental in our assignment, mostly with just hugs.

No need for words then, either.

Losing a child is rough. Many years after Jeffrey’s death, I’m thankful that my optimism in God’s goodness and heaven kept our family as together as possible.

I occasionally see advice on what not to say to grieving parents. Curious to see what made the list, I glanced at the article: “Your child’s in a better place.” “Everything happens for a reason.” “God has a plan.”

I was baffled! Not only had I heard those sentiments with respect to Jeffrey, I strongly believed them myself! How could anyone deal with the death of a child and not think God had a plan? I had to believe that our SMA assignment happened for some reason. Sure enough, I’ve had no trouble identifying blessings, including witnessing the power of prayer and faith.

While the best earthly place for a child is in the loving arms of Mama or Daddy, it doesn’t get any more perfect than heaven.

Words do make a difference, and so does our interpretation of them.

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.