Requiem

I don't know how to mourn his life.

I truly don't.

The news of his death came as a shock. His mother called. We'd not spoken in a couple of years, our contact having been sporadic for decades. In fact, I realise with some surprise, her son and I were in contact a fair bit more frequently, we spoke bare weeks ago. She and I met each other when she called me about me coming to a conference to speak. Once there I found her to be a charming and funny woman. She introduced me to her son. Could he only have been fifteen then? He and I hit it off immediately and spent a fair bit of time chatting. His mother had not told me that he had Down Syndrome. She had spoken of him often on the phone, always with pride,but this she hadn't mentioned. She told me later that she never told anyone about her son's disability, not because she was ashamed of it but because, to her, it was the least interesting thing about him.

We met several times over the next several years at conferences and we always made time for each other. I met her son less often, but for a stretch of time while I did some consultation for the agency in which she worked, I saw both of them on a monthly basis. She was right, Down Syndrome was the least interesting thing about him, he was a truly interesting guy. Down through time, I heard of her fights with the school, with the parks commission (!), with the swimming instructor who didn't want to be in the water with her son (!!) As her son got older, she fought less as she taught him to fight for his own rights. I remember her saying, "I refuse to be one of those parents who say 'I am my child's voice,' he has his own and by God he'll learn to use it." And he did. His growth as a self advocate formed my image of what self advocacy could look like - done right.

And he has died.

His mother called to tell me.

I was shocked.

As was she.

But there was a calm in her voice, a strength.

I grieve the loss.

But I don't know how to mourn him.

 He lived an incredible life.

I remember the celebration when he moved into his own home. His mother wept as she spoke to me. She always knew this day would come. She did not see him as her 'forever child' or 'heaven's very special gift'. She saw him as a infant that would become her boy, as her boy that would become his own man. And those are the transitions he made. Yet when he moved, she felt all the fears that one would expect. Would he be OK? Would he take care of himself? Would he navigate the world well without her beside him? She told me that she realised, with a shock, that these are the fears of all parents regarding all children - her child had simply become her child - Down Syndrome being the least interesting part of him.

He lived an incredible life.

I remember her telling me about his fight at the sheltered industry. The had kept telling him that he wasn't ready for community employment. He kept saying that he was. One day he told the superintendent of his apartment building about his desire for a job and the interference he was getting from the job support people. The superintendent's wife owned a small convenience store and she had just posted a sign in the window to hire someone to work in the store stocking shelves, cleaning messes and keeping an eye on the customers who might want to 'borrow' things. He took the job. Once the scanners came in he was able to work the till. He was very good with money. He was equally good with customers. Sales went up.

He lived an incredible life.

I got to see him at work, a couple years ago, because he pestered the owner to have the store ramped. It was one step and that step was unnecessary. They gave in to his persistent advocacy. Joe and I rolled in and when I saw him working behind the till, with a young teen working stocking the shelves under his supervision, something changed in me. He wasn't proud of his accomplishments, to him it wasn't really anything more than a job and it didn't mean more to him because he had Down Syndrome. Even to himself, who was very proud of who he was, Down Syndrome was the least interesting part of him.

He lived an incredible life.

He never married. But over the years he lived with two different women. The first was someone he met at the agency dance. She was a tyrant. I've never met a more jealous person in my life. He loved her, she controlled him. She was jealous of his relationship with his family, with me, with anyone who came into the store. When she lost control and screamed at his boss for giving him a brief hug in thanks at the end of a hard day, he decided to use those self advocacy skills he'd learned  and the relationship was over. His next woman friend, he never used the term 'girlfriend' as he said he liked 'women', was a woman with Cerebral Palsy who had come into the store. She came in and was startled by something and tumbled over. She jokes that she fell 'head over heals'. The next many years were astonishing to watch. That kind of love is rare to see.

He lived an incredible life.

There's more. So much more. His volunteer work. His involvement in his church; the years they taught Sunday School together. The community of friends that grew about them. His mother's pride. His father's, more distant, love. It was an amazing journey. And now it's ended. Taking everyone by surprise. The loss is keenly felt.

He lived an incredible life.

But he lived this life because he was lucky. He was born into a family who loved him, who nurtured him, who let him grow. He was born into a family which fought when fighting needed to be done, who taught him to fight for himself. He was born to a mother who refused to dim the horizons, who refused to see him as anything less than 'temporarily' hers so she taught him what she would have taught any child who would grow and leave her. He was born to a father who, admits to taking a few years to fall in love with his son, but who also immediately understood that he had a responsibility to this son, like his other son, to teach him how to be a man.

He lived an incredible life.

And it's hard to mourn incredible lives. One of my favourite quotes, learned in a psychology class back when I was in school was by Eric Fromme, "The tragedy in the life of most of us is that we die before we are fully born." He was fully born.

He lived an incredible life.

A life where Down Syndrome was the least interesting part of him. He had his own interesting story. He had tales to tell of full days. He had a red blooded life. His life could have been defined by diagnosis, but it wasn't, it was informed by it but it wasn't defined by it. He made jokes about Down Syndrome, one particularly dirty one that he made to me, that I admit shocked me at first, but that had me reduced to tears. His "don't tell my mother I said that" was the same as any man would have said to any other man with whom he's shared a particularly filthy remark. I've never told her. I never will. And what's cool is, she's good with that.

He lived an incredible life.

Born in a world where he could have ended up ... congregated, segregated. Where he could have ended up living in rooms painted in colours he didn't choose. Where he could have ended up living with people he didn't select. Where he could have ended up living under policies written for him about him without his input. He could have. But he didn't, He dodged the bullet of predetermination.

He lived a life to be celebrated, not mourned.

And that is what I am going to do. I will grieve him, but I will not mourn his life.