Tomorrow, the 21st March is World Down Syndrome Awareness Day. A day I wish I had paid more attention to before Noah was born. If I had, I would have already known about all the family stories of love and adventures with children who happen to have Down Syndrome. I would have known about children with Down Syndrome who are attending school, making friends, enjoying social lives, going to birthday parties and performing in shows. I would have known about adults who have made it to college, are holding down jobs, living independently and even getting married. I would have known that families are strong and the journey while filled with it’s challenges is also brimming with rewards. I would have already seen smiling pictures of happy loving siblings who adore their brothers and sisters and who do not see Down Syndrome.
I might have known that children and adults with Down Syndrome are capable, strong, determined and inspiring. I would have known that the journey I was about to embark upon was not the heart breaking and difficult journey I thought it was going to be on receiving my baby’s diagnosis.
I hope that if you are reading my page that I am making a difference to those who are paying attention to days like this. Tomorrow is significant. It is an opportunity to change outdated perceptions of what it means to have Down Syndrome. It is true that most parents in Europe, on receiving a pre-natal diagnosis with Down Syndrome, will make the decision to end their pregnancy. Termination statistics are up to 90% in France, Germany and UK and Down Syndrome has been eliminated almost entirely in Iceland. This is all at a time where people with Down Syndrome are living longer, healthier lives, are integrated, contributing to society and are achieving more then ever before.
As a family, we have travelled a lot with Noah since he was born and when we visit these countries, people tend to be mesmerised by him. They might not know anybody or have ever seen anybody with Down Syndrome. They often approach us to tell us how surprised they are at how capable he is or how healthy he looks or how happy we are. They will make comments like “He doesn’t look sick” or “he can do so many “normal” things”. It is not unusual for people to watch him closely, mostly with a huge smile or very obvious expression of surprise. They will watch him diving into swimming pools, running races with his sister, ordering pizza from the menu or heading off on his own to the bathroom and they will be impressed with his independence. They look at him and wonder why Down Syndrome has such a bad rap?
In short, people have no idea what it is like to raise a child with Down Syndrome, they just know they don’t want to. They don’t want a child like mine because perceptions are based on fear, misinformation and often advice from medical experts who will advise parents to just try again and parents listen to this advice.
That is why World Down Syndrome Awareness is important. I do know what it is like to raise a child with Down Syndrome. Maybe those who are paying attention will look at my story, a story of love, compassion, laughter and strength. I hope people might be inspired by our incredible little boy who lights up not just our day but that of so many people around us. Noah has taught us how to look at the world in a new light, to see its beauty and to take our time with each other as we journey through it.
But above all of this, Noah is also just like all the other little boys in our neighbourhood, in his school and in our lives. He is 7, he is finding his way in the world, so are his friends. He is funny, he is smart, he is cute and he is cool, so are his friends. He is healthy, he is strong and so are his friends. He loves pizza, TV, swimming, music, cars and dinosaurs. Sure he has an extra chromosome which makes him vulnerable, you will want to pick him up and protect him forever but he won’t let you, because he is independent. He is so much more like his friends then he is different.
I can’t imagine our world without his gorgeous cheeky and beaming little face in it.
Tomorrow, the 21st March is World Down Syndrome Awareness Day. Will you be paying attention??