On Sept. 17, 1980, my son, Gregory Mark Tourin, died. He was 17.
The usual outpourings of sympathy after such an event were somewhat muted. A few close friends commiserated deeply and sincerely, but others were more restrained. Some stated openly what they thought, while others implied it: "How can any parent mourn the death of a severely handicapped child, a child with nothing to look forward to? They should be glad it's all over."
Well-meaning people would say to my wife and me, "It’s a blessing, really." Or "Your 17 years of sacrifice are over. Now, you can live for yourselves." They failed to see the other side of this coin of sacrifice.
What mattered to us wasn't what we did for him, but what he did for us.
Greggy was born severely mentally disabled. He also had cerebral palsy. He spent most of his life in a wheelchair. During the last five years of his life, he was almost completely immobile. The only parts of his body he could move were his toes and wrists. All the natural functions of life that others accomplished automatically had to be done for him. Yet watching this child struggle to gain satisfaction, saluting each day with wide-eyed wonder at what was to come, drinking in and enjoying the tiny portion of life that was allotted to him, gave us a reward that can't be measured in normal human terms.
Taking care of Greggy was a 24-hour-a-day job. He was a very demanding child because the only means he had of controlling his life was his voice, which he used constantly. He learned to baby talk when he was five and talked this way for the rest of his life. During all that time, we never heard from that baby talk one word of self pity or bewailing his fate.
What we did hear were demands to see, do, and go.
Greggy wanted to see everything, go everyplace, and learn everything he could. His world was restricted to a far smaller portion than that given to most people, but that tiny share of life was a constantly unfolding vista of wonderment for him.
He could read signs and large advertisements long before any teacher attempted to teach him. We discovered this when we were going through the yellow pages of the telephone book with him. There he was, calling out the names of the companies that had the larger ads. The finer subtleties of reading always eluded him, but he was able to determine that the larger sign with the big red logo meant K-Mart and the one with the circles meant something else.
When life wasn't interesting to Greggy, it was funny.
When I became cross with him, he would say, "Daddy get mad," his eyes sparkling with anticipation, so I would wave my arms, pretending to be wildly furious. This brought a deep, heartfelt, natural, all-encompassing burst of laughter from him. No one but a mother or father can understand how it feels to hear that delirious sound of pure innocent joy. My wife Beatrice and I would hear the same happy sound when we acceded to his request of "Mommy and Daddy dance!"
Once, when we were driving and he was in the front seat next to me, I said, "Greggy, if you say one more word or make one more sound, I'm going to throw you right out that window. Understand? One sound and out you go!"
He looked at me with an impish grin for a moment and then blurted out: "Baaaaaaah!"
My wife and I sang to Greggy constantly. He memorized many of the simpler songs. During his last two years, he sang himself to sleep every night. He woke each morning laughing and demanding to savour more of life.
His favourite place to go was our local shopping mall, where he liked to look in the store windows and ask us to buy him things. He knew we couldn't buy him everything he asked for, but he seemed to enjoy just saying the words. In his own way, he was improving his vocabulary and his reading.
On the morning of his death, at one o'clock, on his way to the hospital emergency room, Greggy asked to be taken to the mall. We had no idea that he had only a few hours to live. We were on our way to get the cough and congestion in his chest relieved so he'd be able to sleep. He had had worse chest colds than this and had always recovered quickly.
Whether Greggy realized that he was dying we'll never know because he was cheerful and funny right to the sudden end. However, I've always suspected that he knew a lot more than we ever dreamed was possible. If he did know that he was going to die, then he had decided to finish his life as he had pursued it, developing what he had to the fullest and learning what it was possible to learn right up to his last breath.
After the funeral and the departure of our friends, Beatrice and I returned to our strangely silent house.
Our friends were wrong. It wasn't over.
It will never be over until my wife and I are gone and the last echoes of his singing, his laughter, and his constantly curious voice are buried with us.
For six days, I sat in the living room and cried. At the height of my agony, I made some wildly emotional decisions. I was going to quit my teaching job. I was going to retire from life. I would never smile or laugh again.
As I sat there struggling with my grief, many unusual questions came to me. One of them was: What would Greggy have done in a situation like this, if one or both of us had died before him? I knew he would have missed us deeply, but he wouldn't have buried himself in a morass of self-pity. He would have continued to use whatever limited ability he possessed to develop, to learn, and to drink his tiny cup of life to the fullest.
To honour Greggy's memory, I decided to do what he would have done: study, learn, teach, and use my life in the best way possible.