As I sit down to write today I am sitting opposite Noah at the kitchen table. He is navigating his iPad like a pro while savouring his favourite snack. I have never known anybody to enjoy a single raisin like he can, he takes them one by one from a bowl and seems to delight in each single one!
Noah’s perfect day would include a funny movie with an excellent soundtrack you can sing along to. A Margherita pizza all to himself with a proper well toasted crust followed by a bowl of raisins that he can savour one by one. Building lego or train sets with his friends or cousins, a cuddle with Murphy his dog and a drive with Dad in the camper van. His belly laughter and cheekiness fill the air as he enjoys all his favourite things. He is charming and brilliant and he is not so different to any other 5 year old boy.
Today, the 21st of March is World Down Syndrome Awareness Day and there are still many preconceptions about Down Syndrome. Among medical professionals, Down Syndrome is considered a severe disability. Thousands of women are advised everyday to terminate pregnancies where Down Syndrome has been detected pre-natally. In the main European countries, up to 90% of women who detect Down Syndrome during pregnancy are making the decision not to proceed with the pregnancy.
This is at a time when people with Down Syndrome are going to school, graduating, pursuing jobs, living independently, contributing to society and achieving more then ever before.
Before Noah was born, I may not have paid too much attention to these numbers but as I watch him now across the table from me, I cannot reconcile the life we have as a family with the statistics. I was devastated when Noah was born because like many people, my perception of Down Syndrome was so severe, I could not imagine being happy.
Now, I find it hard to believe how much I cried when he was born. I was so very wrong about what family life with this little boy would be like. Nobody was there to tell me differently. In fact, if anything the people who should know better just enhanced and encouraged my fears. My GP told me to try again as this baby was not the one I wanted. I was told I should take the time to mourn the loss of the child I was expecting, the child I was supposed to have. I was repeatedly reminded of all the health risks he would face, the things he would find difficult, the challenges he would face and the work we would have to do to help him.
It is true, there is a lot of work involved in parenting a child with special needs. It is not a full time adventure, there are days that are hard and there are days where I wish life was just a little more straightforward. But there are so many positives about life with Noah that nobody told me about. Nobody sat me down and told me how much I would love him. How much he would be like his sister. How funny and smart he would be. How we would laugh, we would celebrate. How strong he would be, how determined, how motivated and how inspiring.
The truth is I love being Noah’s mum. He makes me happy every day. He is so much more an individual, a brother, a friend then he is a child with Down Syndrome. He has become my greatest teacher and my hope today on World Down Syndrome Day is that our learnings can help to break down some of those stereotypes and show the world that Down Syndrome is not such a big deal.