My Introduction to Death and Beyond

My first experience with the death of someone close to me came shortly after my 16th birthday. 

A good friend since elementary school, Candy had moved to another state with her parents and younger sister during high school. They returned to Fort Worth, Texas, in early June for the graduation of an older sister who had stayed behind and for the wedding of the oldest sister. I saw Candy only briefly before her busy visit ended.

Almost 50 years later, the scenario remains fresh. I was in my bedroom, listening to a favorite radio station, and primping for one of the last days of the school year. My father quietly knocked on my door and said that there had been a plane crash. He told me that Candy’s father was in critical condition. Her mother and the sister who had just graduated from high school had been killed.

I attempted to digest what he’d said, devastated that Candy was facing such an unimaginable turn of events. And then Dad returned. The report had been incorrect. It wasn’t the sister who died.

It was Candy.

Of the four sisters, only Candy was on the small plane. Besides grieving the tragic loss of a bright, perky friend and both of her parents (her father didn’t survive), those who knew the family also grieved for the daughters and new son-in-law left behind.

It was quite the introduction to death.

***

Death is expected in old age, but sometimes even those losses leave gaping holes in our hearts. Unforeseen deaths pack wallops for different reasons. I’ve had some wallops, including the deaths of several of my students and others from my teaching days.

Whatever buffer I thought my prior experiences with death had provided became moot on July 14, 1997, when my baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA). He didn’t die on that date, but my initial focus was on keeping him alive.

When the focus shifted to keeping Jeffrey comfortable, a home health nurse summoned hospice. Our hospice nurse was perfect. She knew when to be present and when to be available. Her priority was Jeffrey’s comfort, but she never neglected to check on the rest of the family as well.

Fellow SMA families who had already forged a similar path provided further boosts and prepping for the end of our assignment. I didn’t comprehend how much they were fortifying me until later. 

When it was evident that we could not keep Jeffrey comfortable any longer, the focus shifted a final time to fervent prayers (and, at times, begging) for God to take him. That didn’t seem to work, but we had one last card to play: giving our little guy permission to go on as he lay in my lap.

Bingo.

Losing our child was a whole new ballgame in the world of grieving.

***

A few years later, as my father’s health rapidly declined, Dad’s family team was ready. All things considered, it was as smooth sailing as possible.

I’m pretty sure Jeffrey helped man the sails and made sure that I was included in the ones on deck at the end. What a loss Dad’s passing was for the rest of us, yet what a relief to know he was free. And what an honor to have been there.

***

In the days, months, and years after Jeffrey’s death, I can’t say for sure that I had a visit from him in my dreams. I did have a visit from my dad shortly after his death. It was so real that I could feel my heart pounding in my sleep. I was in a crowded room when I saw my father — youthful, healthy, and wearing one of his favorite red shirts. I knew I wasn’t supposed to be able to see him.

Dad walked over, wearing his usual infectious grin, and said, “Well, hi! How are you?” I stuttered a bit and replied, “Um, fine. How are you?” He laughed, and without hesitation exclaimed, “I’m fine!”

I believed it, too.

***

I was asked to write this column about my experience with SMA type 1, but my time in active SMA duty lasted less than six months. And with so many advances, I don’t feel particularly helpful.

Death and the grieving process is another story.

Besides witnessing the end for three key players in my life (Jeffrey, Dad, and my mother-in-law), I have been privy to comforting signs from all three.

I’m hopeful that my sharing — even about death — will ease things for someone else.

It takes a village.

***

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.