“When I meet you for the first time and the conversation turns to our children, don’t be sad when I tell you my daughter has Down’s syndrome, be interested, ask questions. I celebrate every aspect of my daughter – her sense of humour, her compassion, her blonde hair, her beauty, her ability, her drumming, her faith and her extra chromosome.”
When Alice was born, the rather hamfisted doctor had two alternating phrases which he seemed to need to repeat, on a loop, until it reached the point where I thought my husband was very likely to thump him! Those phrases were “Don’t feel guilty” (I certainly didn’t) and “I’m sorry”. Sadly he didn’t mean he was sorry for being so inept at passing on unexpected news, he meant he was sorry that our baby had Down’s syndrome. What a terrible thing to say. There we were, with our beautiful new-born daughter and he was saying he was sorry – what’s more, he was sorry about Alice. I wasn’t. How can anyone be sorry or sad about the arrival of a tiny baby, a new life, a miracle?
When my second eldest daughter was born, 8 weeks prem, a lot smaller than she should have been and clinging onto life by her finger tips no-one said how sorry they were, no-one gave me a list of health problems she was going to have. Yet, they did when Alice was born. And for the record, she didn’t have any of them, but Kate did and those that she didn’t have the other two did! But not Alice.
Is it human nature to react with a long, sad face and words of commiseration when faced with differences? I don’t know, but I do know that it happens. We moved house last summer, to a completely different part of the country, so I find myself meeting new people on a regular basis. Inevitably, we end up talking about our families and children and on several occasions, when I’ve talked about my youngest daughter and dropped into conversation the fact that she has Down’s syndrome, that person has stopped, looked taken aback and said “Oh, I am sorry” or “that’s a shame”. I have to hold back from asking “Why?” in a slightly belligerant tone, trying to stick with “Please don’t be sorry” and diving in with a bit of education! What’s worse, I’ve had at lease one person make such comments when Alice (now 19) was in earshot!
Many people don’t react like this. Many people are supportive and positive and some people if they don’t know what to say, quite sensibly don’t say anything!
Today is World Down Syndrome Day. It is 2018 and people with Down’s are more visible than ever. Everyone is different, including people with Down’s syndrome and everyone, also including people with Down’s syndrome, has a place in our society. However, the news that someone is expecting a baby with Down’s syndrome is still so often greeted with shock and horror and sadly, still met with an expectation that the only thing to do is ensure that baby isn’t born. When a baby with Down’s is born, parents are still (but not always) met with hushed tones, sad faces and negative attitudes – it’s a BABY for goodness sake, babies are wonderful!
I have a plea, whenever you meet someone who has a baby, child or adult offspring who just happens to have Down’s syndrome, don’t be sad, don’t express regret, be interested, listen, ask questions and above all, be positive.
Happy World Down Syndrome Day!