This post, on Firefly Community, goes some way, perhaps, to explaining why I found it relatively easy to decide to go ahead with a pregnancy in which I knew I had a 1-in-12 chance of having a baby with Down’s Syndrome; and why I was able to face his diagnosis with less fear than most:
This is the first part of a two-part post on Firefly Community on the subject of blogging about disability. In this part I talk about the potential power bloggers have to effect social change:
I’m on the Firefly Community Website today, considering why so many parents feel defensive when meeting with professionals:
A friend shared a post today about the oft-quoted, and irksome phrase ‘Special babies only come to special people’, and it put me in mind of this short post I wrote two years ago:
Platitudes and Attitude.
A note to well-meaning people.
You say: ‘Special babies only come to special people’. I know you think you mean well, I know you think you are paying me a compliment. But you are not.
You are holding that phrase out in front of you like a talisman against the evil eye: reassuring yourself that it could never happen to you, because you are ordinary, just the same as everyone else, not ‘special’ or ‘different’ like I must be. There’s nothing about you that attract that kind of luck.
Well, guess what? I’m just like everyone else too. I’ve done nothing good or bad in my life to attract God’s eye, either.
I’m just like YOU.
This little boy is my baby, I carried him in my womb, fed him at my breast and he’s one of only three people who can call me ‘Mummy’. That’s the most special thing in all the world. And the most ordinary.
Join me on the Firefly Community website today, where I’m talking about how having a child with Down’s Syndrome changed my life: http://community.fireflyfriends.com/blog/article/having-a-child-with-downs-syndrome-did-change-my-life?utm_source=blog&utm_campaign=blog%20-%20having-a-child-with-downs-syndrome-did-change-my-life&utm_medium=blog&utm_term=blog&utm_content=blog%20-%20having-a-child-with-downs-syndrome-did-change-my-life
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.
Primark is a great place to find a bargain; but, whilst shopping for cheap shorts and tee-shirts for Freddie’s first holiday, I found something I hadn’t bargained for.
Freddie was eighteen months old. I was browsing tentatively, keeping an eye on him as he craned out of his buggy, trying to reach the nearest garments to snatch them off their hangers. ‘Hiya’ was his only word at that time, and he shouted it enthusiatically at every passer-by, hoping for a reaction. Soon enough, he got one. A lady, well into her seventies, came over and began to coo at him in a grandmotherly way. Freddie lapped it up and became utterly charming, making eyes and flirting outrageously. I joined in the conversation with some apprehension. Would she notice? I knew the words people of my mother’s generation used to describe children like Freddie, the negative preconceptions they held.
Suddenly she called out to someone I could not see, presumably a baby-loving companion: ‘Jan! There’s a little one here.’
My attention was on Freddie, I was looking down, wiping his chin. A lady’s feet apppeared in front of the buggy, a head bent over it and was treated to a luminous Freddie-smile.
‘Has he got Down’s?’ she asked
‘Yes,’ I said firmly and looked up … into a pair of distinctively up-slanted eyes. ‘Just like me,’ she exclaimed, beaming.
We talked and talked, all shopping forgotten. The conversation glowed warm with love and positivity, as did the good-natured banter between the lady and Jan.
When Jan went off to look at something that caught her eye, the lady said: ‘If everyone was more like my daughter there’d be no wars. She sees the good in everyone.’ She told me that she had another daughter also, and four grandchildren, and, to my complete astonishment said that this other daughter had always hoped to have a baby with Down’s herself, so much did she adore her sister. ‘Longed for’ were the words she used.
Primark tee-shirt — £3.50. Finding acceptance and love among the racks and rails — Priceless.