Life is typically made up of occasional, seemingly random thuds. Thuds are moments when we sit up and take notice. We don’t usually know what we’re noticing, but there is no mistake that thuds are significant.
The first thud, as it relates to this story, occurred when my husband, Randy, and I learned in our mid-40s that we were going to be parents again. That thud was hefty. A third child wasn’t on anyone’s list. Confident that God saw us as exceptional parents, we plunged into our new reality and accepted the challenge with as much humor as we could muster — and a bit of Geritol.
When our son, Jeffrey, was born, we lived as a family of five for almost two months. Life was chaotic but good.
Then our dog, Duffy, was killed. We discussed heaven, death, and God’s role with Jeffrey’s older siblings. Little did we know that Duffy’s death was a practice run for the biggest thud imaginable.
That thud came exactly one week later, courtesy of a pediatric neurologist. Jeffrey was poked and prodded by medical students for hours. The doctor issued his diagnosis before the tests could confirm it: Our sweet, beautiful baby had a severe case of the worst form of spinal muscular atrophy (SMA). The neurologist said Jeffrey wouldn’t be with us for more than two years, but the genetics counselor swiftly revised that figure to a year.
The complete lack of hope regarding SMA type 1 forced us to fend for ourselves. In other words, we grasped at straws. We sought myriad alternative treatments, because medical experts had no treatments to offer. We also connected to the internet — something I didn’t consider until I realized the internet was a lifeline to other SMA families.
Several weeks after SMA intruded in our lives, I discovered a post on the Families of SMA — now Cure SMA — message board. Someone was interested in starting a local chapter in North Carolina! She was on the opposite side of the state. She might as well have been on the other side of the country. But I was eager to help.
The bond I formed with the author of the post, Cindy Schaefer, was instantaneous and fortifying. Cindy’s son Kevin had SMA type 2. Type 2 was milder but devastating: Kevin reached milestones, only to regress. Like many of us, Cindy’s family had never heard of SMA.
Our friendship was off and running within minutes. Thrilled at meeting a kindred spirit in personality and writing style, I pretended life was normal and sane. We emailed back and forth. How incredibly refreshing it was to feel so comfortable with someone else in the “family.”
And then, thud.
This time, the thud was literal. Like, the corner post of our old farmhouse gave way. It fell right off, which felt fitting. I relayed the situation to Cindy, and we laughed (on my end, to keep myself from crying).
We continued to share the endless crazy things that happened in our lives. We supported each other when things didn’t look so swell, shed more than a few tears when life hit rock bottom (Jeffrey’s death, Kevin’s scary episodes and waning abilities), and cheered when a celebration was warranted.
I can’t describe in a single column how my friendship with Cindy kept me upright during our active assignment with SMA. Once we reached the borders of SMA territory, we ventured on, until we became incredulous at all our similarities. They seem endless. We could write a book!
Today, Cindy and I work together at BioNews Services along with Kevin! We’ve joked for years about being separated at birth. Now that we’ve found each other, we’re joined at the hip. I’m convinced there is a connection somewhere that defies description.
My bet is on angel intervention.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.