Down syndrome – Our Truth

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The termination rate of babies with Down syndrome is high. In fact, more pregnancies are ended than continued when a family learns their baby will have that extra chromosome. I don’t judge, never have and never will, and nothing that anyone says to me will change my opinion there. But I do feel that there is a moral obligation for medical professionals to ensure that these parents hear every side of the story, in order for them to make an informed choice. Negative AND positive. Actually, let’s go even further and say positive and then the negative. Its why I do what I do. Taking time to make sure the positive is out there, break down outdated misconceptions and show our truth.

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It’s not fair on new parents when they only get guided by fear. Overloaded with so many negative scenarios and medical information that they can’t see the light. When they hear so many “I’m sorry” that they can’t see past the sympathy.

Because fear is the reason that people decide to terminate. Fear of the unknown. Fear of what they think they do know. Fear of change. Fear of losing their ‘normal’ life. Fear of having a child who doesn’t fit in with what society has decided is acceptable. Fear of having a child who isn’t perfect.

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I respect choice. But what I can’t and refuse to accept, is only one side of a situation being given the opportunity to be heard. Our children’s truth deserves to be heard.

So if any new parents are currently making an extremely difficult decision and only get to hear one thing from a positive viewpoint, let it be this……………….

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We have a good life. As a mother I couldn’t ask for more and I adore my children for exactly who they are. My husband has a good life, my eldest son has a good life and my youngest who has Down syndrome has a good life. We are happy. He is happy. He is funny, smart, determined, strong, feisty, active and loving. He is loved beyond words. He loves school, has friends, melt hearts, changes perceptions, rides a bike, runs, jumps, loves diggers and tractors, travels, swims, draws, climbs and laughs a lot. He is incredible. Down syndrome did not break us. It didn’t even come close to ruining our lives and has actually enriched it beyond words.

You may not believe me right now. You may not believe the thousands of other parents who are saying exactly the same thing. You may not believe the thousands of siblings that are saying their lives have been made better because of their brother or sister. You may not believe people with Down syndrome when they tell you themselves that they are happy with who they are. You may not believe any of us when we shout as loud as we can from the highest rooftops, because we are desperate for people to listen.

But if you are one of the people who chooses to listen, I promise you this. One day you will be stood right by our side and shouting exactly the same things, willing for your voice to be heard.

One day you will thank us.

 

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