Summer reminds me of my baby’s SMA diagnosis

During our elementary school years, my brother, Paul, and I took a variety of summer classes—art, tennis, swimming, and horseback riding—and lessons at the local museum. A nearby public swimming pool and a small park and its tadpole-laden creek were within walking distance of the house. I enjoyed our stays at YMCA day camp despite the scorching Texas heat and oversized mosquitoes. Luckily the insufferable chiggers were kept at bay with a daily sulfur dust on our ankles. I don’t remember seeing any snakes at camp, but they were there.

In college, summer jobs provided a few spending dollars. I was a babysitter and preschool summer camp counselor. In order to earn money for a trip abroad after graduating from high school, I worked as a short-term clerk in an oil company. Even with jobs, however, summer was for relaxing.

Clara, a character from Gershwin’s opera “Porgy and Bess», sings to her baby: “Summer time/ And life is easy.

My granddaughter’s name is Clara. She had a wonderful experience in kindergarten last year, but she likes to live quietly in the summer.

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This easy life in the summer has been rather elusive over the past few years. My husband, Randy, a retired high school football coach, spent most of his summer days working out at school, on the field, or in the weight room. When it was short-staffed, I helped paint and clean country homes, wash uniforms, line up training grounds, and more. Long drives were the norm.

On the fun side, our children, Matthew and Katie, have participated in summer activities, and both have summer birthdays to celebrate. One year, a road trip took us from North Carolina to California en route to Colorado for a family reunion. It wasn’t easy, but we kept our sense of humor. Sometimes.

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I wouldn’t write about SMA without our baby, Jeffrey. However, since he put on his wings a long time ago, preparing this column requires some creative thinking. All writers face subject-related hurdles at times, so Brad Delldirector of community content at BioNews, the parent company of this website, publishes the special designations of each month as possible prompts.

World Heart Day (September 29) featured a column on heart signs and generous hearts. National Glaucoma Awareness Month (January) included my mother’s struggles with glaucoma. Save Your Vision Month (March) allowed me to re-include my mother, who passed away earlier this year.

Because my brain had a stubborn streak for this column, I looked up Brad’s list. Columnists are asked to avoid focusing on a specific day unless it falls on or after the day of our publication. The June listing says my post date falls between National Blood Donor Day (and Brad’s birthday!) and National Eat Your Vegetables Day. Hmm …

And then I noticed on June 18: international panic day.

It would work.

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Learning that I was pregnant at 42 was a huge surprise. It sparked a small glimmer of panic, but it paled a lot from July 13, 1997, when our bonus baby was 2 months old. That afternoon, Paul, a doctor, found alarming signs during a brief examination of Jeffrey: a dull-sounding lung and no reflexes. Late one night, as I was preparing notes for the pediatrician during Jeffrey’s health checkup the next morning, I felt sheer panic.

Our dog, Duffy, had died after being hit by a car a week earlier, which gave me the opportunity to discuss death, God and heaven with then 10-year-old Matthew and Katie, then 7 years old. A possible repeat?

A few bizarre aspects of pregnancy then emerged. With this unexpected pregnancy, I said we just wanted a “happy” baby (no mention of “healthy”). Also, I had rationalized that three kids meant that if something happened to one of them, there would always be two. Also, I had had no concerns about Matthew’s or Katie’s health during these pregnancies despite being surrounded by severely disabled children at Brockman School. This time, however, years after teaching Brockman, I asked my doctor — after a perfectly normal exam — if the children who couldn’t move had moved in the womb.

What triggered all of this?

On the evening of July 14, after hours spent watching medical students examine Jeffrey at University Hospital, three words – spinal muscular atrophy – caused panic to escalate. And then Randy and I learned the prognosis: death within four years (hours later, half revised). By reflex, we no longer panicked and fell directly into numbness.

There would be no easy life that summer. And we were definitely not in Kansas anymore.

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I would never have volunteered for SMA service or anything similar. Watching a loved one struggle to some extent is excruciating, but when is that loved one your child? There are no words.

However, I am a firm believer that there is good in everything, and the good in our brief SMA mission requires a separate column.

This column should be easy to write, summer or not.


To note: SMA news today is strictly a disease news and information site. It does not provide medical advice, diagnosticWhere treatment. This content is not intended to be a substitute for professional medical advice, diagnosticWhere treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 on issues relating to spinal muscular atrophy.