I’ve spent the last few days feeling a bit blue and sensitive about the press and public response to the NIPT test.
I know I’m not alone. So many parents like me, parents of children with Down’s syndrome feel hurt, embattled.
I don’t want to be like this. I don’t want to have to steel myself every time I see an article about the test. I don’t want journalists (Sarah Knapton I’m looking at you) to think that my child is debilitated or
diseased; that her life is worth less than someone without the addition of a third 21st chromosome. And you know what, what difference would it make if she did have a disease or was debilitated…would that make her worth less than you?
I don’t want to read the adages that get thrown about about Down’s syndrome…the “they’re so happy”, “Down’s baby”, “retard”.
I do see the benefit of the NIPT test. I see that babies will be saved and that their parents will be saved the fear and grief of losing a baby through CVS and amniocentesis testing.
I see that.
I understand why to avoid losing babies through invasive testing is so important.
But then I balance this against how many babies will be aborted. Purely because they have an extra chromosome. Aren’t “perfect”.
Why do we choose to keep trying for a perfect society in such an imperfect world? There is such beauty in imperfection. If we all looked the same, the Arian race as some madman once tried to do…wouldn’t it be a boring world?
Our perfect society aim is so wrong. Many people couldn’t care less about our fellow man. Yet they seek to have the perfect child, perfect home, perfect perfect perfect.
Evie has taught me tolerance and love. She has opened my eyes and made me appreciate my life and how fortunate, yes, truly lucky that I am. I am lucky to have a daughter with an extra chromosome. She’s my teacher and I am her student. I learn from her to embrace all life. I learn that society’s view of perfection is twisted. That imperfections are beautiful and perfect just as they are. Exactly as God intended.
If all trees were the same shade of green, if all flowers were the same shade of red, how very different our world would look. Bland. Regimented. No variation. One of my favourite things in nature is the ever varying colours, the millions of different kinds of fauna and flora. The beauty I find in nature is through its very difference. The sky being a perfect blue is incredible but when a storm threatens, this thrills and scares me…the rumbling clouds, the whirling dervish that is the sky then. The red and oranges hues that threaten the ever advancing storm.
This is what life is. And I am sick and tired of having to defend difference.
Evie is awesome.
There is beauty in her delay in learning.
Targets are set for her and rightly so, in order that she can be the best that she can be. But if she doesn’t meet them then that’s ok too. She tries and she learns at her own pace. When she does meet them it’s such a rush as she worked so hard to get there. Things that her younger sister finds easy, she struggles to learn and it means even more.
If you could happily get rid of such beauty then you are a sad, bitter creature indeed.
I noticed on Evie’s class page last night that they are learning about Vincent Van Gogh. I have always loved Van Gogh from the first moment I saw “A Starry Night”. Many years ago my brother gave me a copy of it and it still has pride of place in our home.
His work wasn’t appreciated when he was alive. His incredible talent is only now seen for the true genius he was. I love the swirling movement, the feeling of power. The fact that it’s different. His work always called to me. As Evie calls to me.
I welcome difference. I love variety. Beauty is all around us, we have to accept that life is for everyone. Not the select few.