Saturday, May 22, 2010

I Remember Jason

They were the first family to welcome us to our new neighborhood. Of course that wasn't their original intent. They came over to demand why we were ruining their football field.

I had bought one of the two vacant lots between their house and the one to my north that had been undeveloped since they'd moved in about 15 years earlier. I hadn't wanted to lose a growing season waiting for the construction to finish, and had ordered a number of baby trees from the soil and water conservation people, or from catalogues, or simply had things to transfer from my old yard. I was out in my new back yard corner with my son Paul, planting them in temporary beds. There was nothing else on the lot but what would grow into 6' tall weeds. Since they were gardeners and tree-planters themselves, I quickly gained their approval as a new neighbor, and we became friends.

They were the Vanderbecks - and the McCanns. Char had been a McCann and had two boys, John and Jason. Jason was a Downs Syndrome baby, and - possibly because of that - her husband divorced her and moved to California, leaving her on her own with two children to raise. Dick liked what he saw and married her, giving him an instant family. He was a house painter, she was a stay-at-home mom with her hands very full. Among other things, she loved Dick for how good he was with Jason.

When we met, I think he was around 20, going on three. Maybe four. He was short, chubby, dark-haired, and bore all the traditional facial and body features that mark Downs. Char had worked with him on a few basic signs for communication, as his speech was always so unclear that she almost always had to translate for him, at least to me. He remained in diapers, and never became literate. In later years, however, he showed he could count up to four with great precision, and got the kind of assembly line job that involved putting a fixed number of tiny items in a small bag. While it would bore us to distraction, Jason loved it and was proud of his ability to sit there all day and concentrate on it and do it right.

He was always a cheerful kid, never prone to tantrums, willing to be friends with - well - most of the world. If kids were mean to him as kids will be, the parents got together, brought the kids together to play respectfully, and fun took over. When we moved in, Jason had an instant babysitter in my youngest, Paul, actually a few years chronologically younger than Jay. Char told me he liked Paul best because he'd actually play with Jay, playing video games or watching video movies together rather than just supervising from a distance. Once Paul got his license, he was even able to take Jay bowling at the local alley, until Jay couldn't tolerate the smoke there any more.

He had a little streak of mischief in him too. His parents told me about a time in school where he reported getting hit by a teacher. Naturally they were ready to do whatever it took to protect their son, but when he said it in front of them, it was with such a gleam in his eye that they could tell that he somehow thought it was all a big game and that nothing had really happened to him. They quickly calmed everybody down and taught Jason that this wasn't really funny.

I spent most of my time with Jason when Char and I started going to the local movie theaters. Jason came along, enjoying his outing no matter what the movie was. We got to be quite a weekly thing for quite some time, sharing dinner together afterward at some local restaurant. I would drive, since Char didn't, yet. But after some months, she decided she needed to learn, so she set about getting her license. Sometimes she would ask me to ride along with her while she practiced. While nerve-wracking, I would be able to comment on corrections without that husband-wife interaction that seems to work just like parent-child practice driving. (You know: blaming, yelling, that sort of thing. Not particularly helpful.) She did manage to stay out of trouble, mostly keeping to the back country roads until she got more skilled and confident. Jason, of course, had no worries, just along enjoying the ride.

Once Jay got too old for the high school program, he graduated to one of those places which finds work situations for disabled people. So far as I know he worked through the rest of his life. His cling to life was precarious at times, starting when he was a baby. I first heard about pneumonia shots because Char told me he got both them and flu shots every year. They didn't keep him perfectly healthy, but they seemed to make the difference in how life-threatening such illnesses became. His lungs grew so bad that he was on oxygen for about his last ten years. The fragility, I'm told, is typical of Downs kids. Some of his problems were exacerbated by his doctors' lack of understanding about his condition. One doctor became alarmed by how much his neck angled, telling his parents that one sharp shock, like a bump in a car, could sever his spine. After he received his surgery, they found out that in fact his neck was "normal" for him, often misdiagnosed, and the painful surgery was unneeded. Like most parents of special children, they became the experts who had to educate the doctors - and other parents like themselves.

Dick was a quirkily individualistic kind of a guy, and one of his quirks was avoiding doctors until it couldn't possible be avoided any longer. When they discovered the lung cancer, he had only months left. Char took care of him as well, with hospice assistance. Movies were one of her few breaks, only now sometimes she drove the three of us in her new car. After the funeral, she sold the house and moved to southern Minnesota to live near her son John and his wife and growing number of grandchildren. Our contact became sporadic.

Jason's father came back from California, courted Char again, and they remarried. It lasted for just a few years. Jay left home for a special place where others like him lived in semi-independence. He and Char missed living together for a while, but he grew to be proud of his independence, and Mom was never far away, though now she was free to work full-time outside the home.

A couple days ago I received an email informing me that he hadn't survived his last bout of illness. He lived to reach his upper thirties. I will always remember Jason, in many ways and for many things. Above all, I always remember him with his big smile. Jason was a joy.


* * * * * *

I received an email from Char after reading this. Jason had his own garden at his group home, which he loved so much he watered it every day. They are going over to plant it and to make it a permanent garden with a plaque in his memory.

She ends, "Now he is with his Dad and they are playing ball and playing in the sand box."

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