World Down’s Syndrome Day #WDSD15 and Sequins in the Bed

My tired husband and I crawl into bed and realise that fairies must have dumped their treasure chest of sequins on our sheets during the day. We laugh as we unstick them from our legs.

In a room across the hall we hear two little voices talking partly to each other and partly to themselves. The conversation filled with so many run on sentences and gibberish that it begins to sound like they are talking in tongues.IMG_20140902_204939_resized_1

No matter how tidy our house gets, the evidence that two happy little girls live here is ever present. Glitter glue drawings, finger paints stuck to the carpet, hieroglyphic Crayola on the walls—all made by two loving sisters.

 

One of them happens to have Down’s syndrome. And that really is an after-thought.

 

I am not as politically pro-life as I once thought I was. I can’t get into the mind and soul of a woman not feeling she can cope with a baby—one with Down’s syndrome, or not. The fact that there are so many children in orphanage’s and foster care makes me think that our efforts are better served helping children who are already out of the womb and living lives worthy of horror films.

But as it is Down’s syndrome awareness day, I want to spread the word, that this is no longer a condition that it was once thought to be. Our life is not altered in some horrible way. My husband and I are not martyrs who have given up our social calendar and life savings to take care of our poor disabled child!

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It is quite the opposite. We have the perfect family. Amelia does not have DS, and Chiara, her younger sister does. She learns at a slower pace. Big deal. Yes, sometimes that is frustrating, but it is not frustrating enough to make me cry on my pillow. She plays with children who do not have DS, and she plays with some who do. She will go to a mainstream school and be taught all the subjects everyone else does. She will play all the games everyone else does.

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If she cannot cope with a mainstream school, then she will go to a school for children with additional needs. Chiara took several classes at a fabulous school like this already. In fact, Tim and I took a sign language course there and for 2 months got to pretend we were students and flirt with each other in class (that was fun!) Every time we see students at this particular school, they are happy (not to mention outgoing!) So what if she goes there instead of a mainstream school? Big deal. I am not going to cry over that either.

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What does make me sad, is people’s perception of a diagnosis of Down’s syndrome, and I would like to do all I can to change that. Women are scared shitless when we are pregnant. There are forms we must sign asking if we want to be tested for the “risk” of a child with DS. Everyone dreads the diagnostic tests for the markers of Down’s syndrome. We are conditioned by the medical community and society to hope that we are not one of the “unfortunate” ones.IMG_20141017_234433_resized

But I tell you, this is all wrong! What we should be getting from everyone is support and nurturing…and oh yeah…CORRECT INFORMATION. It doesn’t happen, and believe me, I know from many people in the past couple of years; the amount of incorrect information on DS is astounding. Educate yourself. Go to the Down’s syndrome association website, and look at families like mine. We are the real face of Down’s syndrome. The face of 2015.

There is no “risk.” There is only “chance.” The only risk you run is sequins stuck to your arse.

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