Summertime: Sometimes the Livin’ Is Easy, and Sometimes It’s Not

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by Helen Baldwin |

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During our years in elementary school, my brother, Paul, and I took a variety of summer lessons — art, tennis, swimming, and horseback riding — and classes at the local museum. A nearby public swimming pool and a small park and its tadpole-laden creek were within walking distance from home. I enjoyed our stints at YMCA day camp despite searing Texas heat and supersized mosquitoes. Thankfully, the insufferable chiggers were kept mostly at bay with daily sulfur dusting on our ankles. I don’t remember seeing snakes at camp, but they were around.

In junior high, summer jobs provided some spending bucks. I was a babysitter and preschool summer camp counselor. To earn money for a trip abroad after high school graduation, I worked as a short-term clerk at an oil company. Even with jobs, though, summertime was for taking it easy.

Clara, a character in Gershwin’s opera “Porgy and Bess,” sings to her baby: “Summertime/ And the livin’ is easy.

My granddaughter’s name is Clara. She had a wonderful kindergarten experience this past year, but she loves livin’ easy in the summertime.

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That summertime easy livin’ has been rather elusive over the past “lotta” years. My husband, Randy, a retired high school football coach, spent most summer days working at the school, on the field, or in the weight room. When he was short-staffed, I helped paint and clean field houses, washed uniforms, helped line practice fields, and more. Long commutes were the norm.

On the fun side, our children, Matthew and Katie, were involved in some summer activities, and both have summer birthdays to celebrate. One year a road trip took us from North Carolina to California on our way to Colorado for a family reunion. There was nothing easy about that, but we retained a sense of humor. Sometimes.

***

I wouldn’t be writing about SMA without our baby, Jeffrey. However, since he donned his wings long ago, preparing this column requires some creative thinking. All writers face topic roadblocks at times, so Brad Dell, director of community content at BioNews, the parent company of this website, posts each month’s special designations as possible prompts.

World Heart Day (Sept. 29) resulted in a column about 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 again include my mother, who passed away earlier this year.

Because my brain possessed a stubborn streak for this column, I searched Brad’s list. Columnists are urged to avoid focusing on a specific day unless it falls on or after our publication date. The June list indicates that my publication date falls between National Blood Donor Day (and Brad’s birthday!) and National Eat Your Vegetables Day. Hmm …

And then I noticed June 18: International Panic Day.

That would work.

***

Learning I was pregnant at 42 was a whopper of a surprise. It sparked a tiny glimmer of panic, but it paled mightily in comparison to July 13, 1997, when our bonus baby was 2 months old. That afternoon, Paul, a physician, found alarming signs upon a brief exam of Jeffrey: a dull-sounding lung and no reflexes. Late that night, as I prepared notes for the pediatrician at Jeffrey’s well-baby check the next morning, I experienced full-blown panic.

Our dog, Duffy, had died after being hit by a car a week before, providing me with a chance to discuss death, God, and heaven with Matthew, then 10, and Katie, then 7. A possible rehearsal?

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

What sparked any of that?

The evening of July 14, after hours of watching medical students examine Jeffrey at the teaching hospital, three words — spinal muscular atrophy — ramped up the panic. And then Randy and I learned the prognosis: death within four years (hours later, revised to half that). Reflexively, we ran out of panic and straight into numbness.

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

***

I never would have volunteered for SMA duty or anything remotely similar. Watching any loved one struggle in some capacity is excruciating, but when that loved one is your child? There are no words.

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

That column should be easy to write, summertime or not.


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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