Woken feeling really blue. I am fighting a wobbly lip, I have an upset tummy and my heart feels heavy. It’s a feeling similar to when we were given seb’s diagnosis. I want to scoop him in my arms and run away somewhere. Somewhere safe. Somewhere isolated. I feel excluded.
And just like then, it’s not me I’m scared of, it’s other people. And other people’s thoughts.
When we are walking down the street as a family, are people looking at Seb thinking he should never have been born? Are people looking at Seb and feeling sorry for him? Do they pity me for having him? Do they think I am brave? Do they wonder how I cope? Is the breath of pregnant lady’s and expectant father’s taken away in horror when they see my beautiful, trusting son who has a lust of life like no other and the biggest spirit. Is my 12 year old niece, who adores her cousin, picking up bits of the news, and starting to think that Down’s is something to be upset about? Is she understanding the concept that most people choose to end a pregnancy if a baby is like Seb?
In other countries where a similar test has been introduced the rate of births of babies with Down’s syndrome has declined DRAMATICALLY. Denmark expects to be “free” of Down’s syndrome by 2030. In their words – eradicate. Free. Like it’s a heavy burden.
Of course it’s a good thing that this test results in less miscarriages. But overall it will result in more lost babies. Babies with Down’s syndrome. This is not being reported. It’s not “worth” reporting. Those lives are perceived of less value.
I don’t really care too much if nobody ever chooses to have a baby with Down’s syndrome again. Although it obviously saddens me. But what I care about is the media and press reinforcing the idea that my son is of less value. And telling the story that his life isn’t worth living. Or his contribution to his family isn’t worth pursuing. And reinforcing the idea that his life, and our family, should be pitied and felt sorry for and have a total lower net worth than the family next door.
THAT’S what I cannot bear.