This is one of my favourite posts from the archive; I think it demonstrates the difference between the reality experienced by the families of those with Down’s Syndrome, and the mistaken perceptions held by the public (and medical profession) of what our lives must be like.
I had another life-validating encounter in town last week. I’ve had quite a few of them over the last six-and-a-bit years. When I say life-validating, I am not mistaking the term ‘life-affirming’; what I mean is … well, I’m struggling to put it into words exactly … but what I mean is this:
I was in a shop in town with Freddie. As we walked down the aisle in one direction, an elderly couple approached from the opposite. The man was frail and stooped, leaning heavily on a walking stick. Freddie shouted out a cheery ‘hello’. Hearing him, the man looked up, then made his way over to us. His face bore a rather wistful expressioN as he ruffled Freddie’s hair, and stroked his cheek. ‘What a grand little chap,’ he said. I could have sworn there was a slight edge of emotion to his voice as he repeated, quietly: ‘a grand little chap.’
‘We had some wonderful times with our Alan,’ he continued in a faraway voice. The lady with him, who I presume was his wife, explained that ‘Alan’ was the gentleman’s brother, who had also had Down’s Syndrome. She confirmed that they had, indeed, had many wonderful times with him over the years. We chatted for a bit — the man told me about the sort of things that Alan used to ‘come out with’. The couple’s smiles were genuine, twinkling in their eyes, but they seemed, as I observed, rather wistful.
Then the lady said: ‘He’s passed away now.’
‘But he was a good age,’ said the man. ‘He’d turned sixty.’ (Two generations ago, this would have been a good age for a person with Down’s Syndrome.)
I knew then why they were so wistful — because he had brought so many good things into their lives, and they missed him.