5 hours ago
Wednesday, August 12, 2015
Amy Winehouse's death was a tragedy, my son's life isn't
Dave and I saw Amy the other night, the documentary about Amy Winehouse. It's a powerful movie, the kind that leaves you sitting in the theater till the last credits roll, absorbing what you just watched. We knew the ending, of course, but not the events leading up to it—or the struggles that were the basis for many of Winehouse's songs. The film gives a good look at the vivacious, funny and super-talented woman behind the headlines and infamous addictions.
"Her death was a real tragedy," Dave said in the car ride on the way home, and I agreed.
That word. Tragedy. It's what people thought about Max after he had a stroke at birth. Heck, it's what I thought as I sat in the NICU beside the incubator that held an unconscious Max. How could this have happened to a baby?, I thought. The pediatric neurologist and neonatologist, aka Dr. Doom and Dr. Gloom, only spoke of the potentially worst outcomes, exacerbating my grief.
After Max came home, we had a baby naming party. A friend who unexpectedly lost two parents within a couple of years of each other leaned over to me in my kitchen that day and said, eyes filled with tears, "I've been through a lot, but what happened to you is worse." It was meant with kindness and empathy, but hearing that made me despair more during what was already the bleakest time of my life.
And then, there was Max, an exceptionally smiley, chubby-cheeked baby who cheerfully endured therapy sessions and basically charmed everyone who got to know him. A child who kept on progressing, slowly but surely, on his own timeline. By the time his first birthday came, I was no longer in mourning for the child I hadn't gotten; I could enjoy the one I had.
While what had happened to Max was shocking and awful, ultimately it wasn't a tragedy. Max is a sweet, loving, ebullient, bright, motivated kid with challenges that are more apparent than ones other people have. I am lucky to have him.
I know that some see his disabilities, even him, as a tragedy. Perhaps I would feel the same about a child with disabilities if I'd never had a child with cerebral palsy. I get lovely, concerned emails from people offering to say prayers for him. Like many parents of kids with special needs, I am all too familiar with The Pity Stare. But tragedy? No.
Tragedy is a family member stricken with disease. Tragedy is a child dying of cancer, as has happened in our community. Tragedy is a fatal car, train or plane crash or any serious accident. Tragedy is a catastrophic natural disaster and its victims. Tragedy is 9/11, Sandy Hook, anyone whose life has been taken by a raging gunman and people including Eric Garner and Robert Ethan Saylor who were killed by authorities. Tragedy is the murder of beautiful souls like Kayla Mueller who venture into areas of conflict and war zones to do good. Tragedy is a talented singer done in by fame and her own demons.
There are all kinds of tragedies in this world. My son, he isn't one of them.
Image source: Flickr/Mick O
Posted by Ellen Seidman at 6:37 AM