The prompts that jolt me back in time, and memories that need no prompting

I sometimes experience an unexpected blast into the past. For example, if the weather has just the right balance of sunshine and crispness, I’m back in elementary school, around Thanksgiving, playing chase with my brother and our visiting cousins around the schoolyard across the street or the alley next door, canopied by eerie trees.

Another is the acrid smell of diesel that conjures up one of my most magical memories: a summer abroad in Oxford, strolling through the idyllic setting with my best friend, diesel buses along our route all around us. Ahh, sweet pollution!

The other morning, I cut through the bakery section of a local grocery store, as usual. There’s always a delectable aroma of cinnamon rolls, fresh bread, and cookies on one side and bacon, fried chicken, and more on the other. This time, for some reason, the aroma cracked open a memory from high school. Wanting to earn some spending money, my best friend and I had landed jobs in the Texas Christian University cafeteria and were assigned stations in the serving line.

My initial assignment included dishing out pinto beans, and I did that splendidly for the first two students. However, when the third student, who sported a substantially beefed-up athletic physique, also asked for beans, one scoop seemed grossly inadequate. So, I doled out one ladle and then a few more, but no sooner had he scooted his tray away than a voice of authority overdose bellowed, “Only one scoop of beans! They only get one scoop!” To my credit, I finished my weekend shift before submitting my resignation.

Last year, my husband, Randy, exhibited a few symptoms that warranted immediate attention in the emergency room. The nursing staff wasted no time hooking him up to the usual machines. Beep. Beep. Beep. It’s standard procedure in the ER, but it never fails to take me back to the night that changed our lives.

Recommended Reading

May 27, 2026 News by Michela Luciano, PhD

New SMN1 deletions found in 2 women with mild adult-onset SMA

Take me back

On July 14, 1997, Randy and I sat in a room at Brenner Children’s Hospital, watching the nurse hook our 2-month-old baby, Jeffrey, to machines. Beep. Beep. Beep. We were there for a consultation with a pediatric neurologist who would surely be able to tell us what was going on with Jeffrey’s dull-sounding lung, lack of reflexes and movement, and weak cry and cough — and, even more importantly, know how to fix it.

Beep. Beep. Beep.

When he came in, he cut to the chase. He thought Jeffrey had a severe case of SMA type 1, or Werdnig-Hoffmann disease, the deadliest form of spinal muscular atrophy. Before I’d managed to figure out what “spinal” and “muscular” and “atrophy” meant when strung together, he dashed our hopes in one fell swoop: “The muscles that control movement, sucking, swallowing, and breathing will eventually stop functioning.”

The devastation continued: “Most don’t see their fourth birthday.” The genetics counselor halved that the following day. Jeffrey likely wouldn’t blow out two candles.

Beep. Beep. Beep.

Beep.

Memories that require no prompts

It’s been almost 29 years since that diagnosis. Some aspects of our brief SMA assignment will never need inadvertent prompts. Watching Jeffrey’s face turn gray, then white, as three sweet nurses attempted to draw blood from his forehead for the new SMA test. Constantly scrounging for “the bright side” of our assignment and even humor to offset the stress in the face of no treatment or cure. Pulling into the driveway after a day of appointments and errands as Jeffrey turned blue. Rushing him into the house, immensely thankful that the suction machine was in place and that I’d gained experience suctioning one of my students before suctioning our own child. Witnessing in horror as Jeffrey experienced respiratory distress three times after a consultation gone wrong with a pulmonologist — in his office, in the emergency room, and after being admitted to a room. Praying to God to take Jeffrey, then giving Jeffrey permission to go, and watching him do just that two breaths later. All the signs and special connections!

These and untold other memories from our brief SMA journey still pop up randomly after almost three decades. No prompts may be needed, but a freshly baked cinnamon roll would be nice.

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.