Having a child with Downs Syndrome has taught what is important in life

7 April 2014

 

On September 14th last year, I gave birth to my third baby boy. He has Downs Syndrome. It was a shock.

In the days after Wilby’s birth, one of the things said to us has stayed with me: “No one would choose it”. And I agreed. Why would you? But importantly, I knew straight away that we wouldn’t, that we hadn’t, NOT chosen this either. I mean, let’s be honest, if we had wanted to we could have known that Wilby had Downs Syndrome in early pregnancy and chosen to terminate, there might be no little Wilby here today. I can barely contemplate that. Why would anyone not want a little Wilby in their lives?

I think I know the number one answer to that question. Fear.

To give an indication of just how big this fear is: I read somewhere that 94% of couples with a pre-natal diagnosis of Downs Syndrome choose to terminate. In fact once you have a pre-natal diagnosis, from what I hear, you are encouraged down this route by the medical professionals. I don’t know how many couples choose, like we did, not to know. At the end of the day he is our baby. I am glad I did not know before the day he came into the world as I do not know how big my fear might have grown. But when he was here, he was just here. Our beautiful baby boy with the deepest blue almond shaped eyes. There was no way I could not love him. And I believe the same can be said for pretty much anyone who meets him. He wins over so many hearts.

The only fear I have for our little chap now is how he is met by the rest of the world, for the rest of his life. There is not a bit about Wilby that I would want to change. What I would like to change is the attitudes and values of the world. Why are we so afraid of difference?

That is not to say I never felt fear. That I never felt grief for the ‘normal’ baby we were expecting. Those first days were the most painful I have known.

Within an hour of his birth, my new baby and I found ourselves in an ambulance, sirens screaming, on our way to hospital. I remember sitting in the back, with my baby next to me in a plastic box still just blinking his wet little eyes, and my own eyes filling with tears. My chest racked with silent sobs that I tried so hard to keep in. I looked out of the window and saw the traffic pulling aside for us, blue lights reflected in their windows, and I cried so hard it felt like my heart was breaking. The physical pain of my heart breaking was so hard to bear. I did feel fear.

Today our beautiful boy, Wilby Sol, is six-months-old. He has brought us so much joy already. He broke our hearts open when he arrived on this earth, and for that we are grateful, as to have your heart truly opened is an incredible feeling and allows immense capacity for love. Those that are close to us will say the same. I am so truly grateful to have Wilby in our lives, for all that he is and all that he has taught us about what is real and important in life.

Downs Syndrome is a natural genetic variation. (I prefer this as opposed to a ‘chromosomal abnormality’ as it is often described.) And variation and diversity is what makes life so very rich. With the birth of each of my children I felt life get richer, but with Wilby’s arrival I have appreciated this even more. I am saddened by the fear that surrounds difference and the possibility of a world where we attempt to eradicate it.

Having a child with Downs Syndrome is not the end of the world. Far from it. For me it has been the door into a new world of unexpected joy. Rather than mourning the fact that he is ‘different’ I am more aware than ever that being different is what makes each and every one of us a remarkable, extraordinary person.

Wilby may struggle in some areas of his life, but he will certainly excel in others. Who cannot say the same of themselves?

In this world nothing is perfect, though we all spend enough time striving for it. But I can tell you, if you are open to it, beauty and perfection can be found in the most unlikely places. Wilby is a joy; a total delight. And we look forward to letting him show us just what he has to offer this world. Of course we are biased, but we think he is just perfect.