As a mum of a child with Down syndrome, I think one of the worst questions a stranger can ask is:
“Didn’t you have the test?”
This is not a question that you should ever ask anyone that you’ve never even met, but have randomly bumped into one day. Honestly, it happens. I’ve heard stories of women coming up to new mums in the supermarket and asking this very questions, or groups of mums at a playgroup asking the only mum there with a child with Down syndrome!
Don’t get me wrong, I’m always more than happy to talk about River and our story. In fact, I love answering questions and am very rarely offended by anything. I know that we were all uneducated once, and that only by being open, honest and friendly can we ever make positive changes within society. I want people to know that they can approach me and that I am in no way uncomfortable about talking about River and his diagnosis.
Anyone who knows me or follows Rivers journey knows I didn’t have the test because of his late diagnosis. And this is in no way because I don’t agree with the test, I think used in the correct way it can be beneficial, but that’s a whole other issue. Anyway, I was never offered the test and to be honest Down syndrome never even entered my mind once during my pregnancy. I also have no problems talking about whether or not I had the testing, it’s not that it is a sensitive subject for me as it’s not. If family, friends, fellow mums of children with Ds, pregnant women looking for advice or anyone who has an interest in River and his life asks me this question, it is in no way offensive to me.
But, if a random stranger ever come up to me and asks “didn’t you have the test?” I will lie. Because there is a big difference in someone genuinely wanting the information and asking “did you have the prenatal testing?”, and someone who asks “didn’t you have the test?” because they assume that you didn’t. That is the person I will look in the eye and tell them that I did have the test and chose to keep my son. The reason for this is because if a total stranger asks me this question, I hear
“Didn’t you have the test? Well you obviously couldn’t have had it, because if you had been told you were carrying a baby with Down syndrome there is no way you would have kept it. There’s no way you would have carried on with the pregnancy if you had known. I mean why would anyone choose to have a child with Ds?”
I hear that you don’t think my child is worthy of life. I hear that you think he was a mistake and that I would never have kept him if I’d had known. I hear that you don’t believe I would have wanted a life with my ‘imperfect’ son. I hear that you don’t believe that he is the best thing to have ever happened to our family. I hear that you don’t value his life.
I am one of the most open parents there is regarding Rivers diagnosis, I welcome questions and love talking about him. My boys are my favorite topic! I see questions as a chance to educate and challenge outdated views and by meeting River people’s perceptions of Down syndrome are easily changed. I’m rarely offended and know that most people mean no harm and have good intentions. But this one question hits me deep. It’s the one question, the only question that really affects me. Because however ‘imperfect’ a stranger feels my son is, I know the opposite to be true. The thought that anyone could look at my son and not just see a little boy enjoying his life upsets me, because I adore him and am so grateful that he is ours.
So although I don’t disagree with testing, I am so glad that I didn’t have the opportunity to have it. No test, no amount of medical information, no amount of worry and stress and opinions of others, could ever have prepared me for my beautifully perfect little boy. No test could have ever told me I was carrying my beautifully perfect, loving, mischievous, funny, determined, strong, adventurous, fearless, smart and brilliant River.