Life Lessons From Dad About Finding Joy Amid Uncertainty

On the last day of this year’s Cure SMA conference, I sat on a panel called “It’s a Wonderful Life” with other adults in the community. The cheeky title is meant to reflect the notion that adults with SMA can and do have fulfilling lives. It’s a bit ironic, given that the classic movie of the same name features a grumpy old man in a wheelchair as the villain.

This year’s panel coincided with Father’s Day, and the timing prompted a question about our relationship with our dads. Most of the other panelists launched into tear-jerker monologues about how much their fathers meant to them. One told a story about how her dad cared for her brother before he passed away. Another became emotional talking about his late father and the times they shared together.

Then there was me, with my dad sitting in the audience. I’m not one for sappy speeches, and I wasn’t going to top the other panelists anyway. It wasn’t until after the session ended that I realized I should have said, “My dad taught me everything I know about exterior illumination.” If you don’t understand that reference, you clearly haven’t seen the definitive Christmas movie. One-liners and movie quotes are the primary means of communication between my dad and me.

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My dad grew up with two brothers, one a couple of years his senior and a younger one who was still in middle school when he entered college. Despite having good parents and a steady upbringing, he insists that watching “The Waltons” as a kid provided him with a moral foundation for his life.

When my parents married in 1986 and moved to my hometown in North Carolina, both were beginning their careers in journalism. Mom was drawn toward copy editing, and Dad worked primarily as a reporter, back when newspapers were still thriving.

I entered the picture in 1993 as the youngest of three kids, and I revealed my dysfunctional muscle-brain-communication system about 18 months later. Once SMA became a part of our reality, both of my parents had to make sacrifices in order to tend to my physical health and quality of life.

Dad initially took a side job at UPS on top of his full-time job to help cover the medical bills that were starting to pile up. Living with any disability is expensive.

What began as a side hustle evolved into a second career. My dad eventually left journalism and public relations behind, and he’s been a UPS driver for the majority of my life. When he was my age, he probably thought his life would look very different from what it is today. At 28, he wasn’t thinking about being a delivery driver, and he had never heard of SMA. Nor did he imagine that he would outlive his older brother, who died from colon cancer in 2019.

Last week, my family celebrated Dad’s 60th birthday. Life didn’t turn out the way he anticipated, but it rarely does for any of us. Just in the past few years, our world has experienced a pandemic, political polarization, and we were subjected to watching the train wreck of Elon Musk hosting SNL in 2021.

During my lifetime, Dad has taken on a number of roles: caregiver, grandfather, Sunday school teacher, cross-country chauffeur, and many others. I inherited his ability to strike up conversations with strangers, a talent that comes in handy quite regularly.

Dad and me at the Warner Bros. Studio Tour in California. Behind us is Phoebe’s guitar from “Friends.” (Courtesy of Kevin Schaefer)

Living with SMA has taught me many things, but seeing my dad adapt to and find satisfaction in change and uncertainty has made me who I am today. He may not know his Apple ID password, and he may need a manual to turn off a computer, but he knows a thing or two about life. I guess I can thank the writers of “The Waltons” for that.

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