When I sat down to write about World Down Syndrome Day, different thoughts popped into my head. I envisaged starting with the origin of this day, for example, explaining why 21 March was chosen and ramble on about the 3rd copy of chromosome 21. But that sounded too scientific. Then I thought about mentioning that the Empire State Building will be lit up to commemorate this special day, but we’re not American. I could also state that it’s the 10th anniversary of World Down Syndrome Day, but as Nicholas is 2 years old, it hasn’t really held much significance for us until 2013.
So I decided to rather write about what this day means to our family and to especially Nicholas. What we’ve always wanted, since we found out after birth that Nicholas had Down syndrome, was that he’d be accepted for who he is. We wanted him to be defined by his character, his personality and not by that extra chromosome. Right from the beginning, we hoped to raise Nicholas as we do his two brothers and be able to give him every available opportunity. Yes, we know that there will always be limitations placed on him – no one walking this earth is perfect, but don’t we all just want to be given a chance?
Too many times, we focus on the things we can’t do and forget about those we can, our unique abilities that make us who we are. So today, I don’t want to think about the milestones Nicholas hasn’t yet achieved, his next medical check-up or his next therapy session. I want to honour and celebrate the person he is right at this very moment, a true blessing in our lives. I cling onto the hope that through the awareness of World Down Syndrome Day and everyone involved in acknowledging these extraordinary people, Nicholas has a very bright future ahead of him. There is still a long road ahead and many hurdles to overcome, but I know that his dreams and aspirations have the possibility of coming true. It’s what every parent wants for their child and Nicholas is no exception.
Happy World Down Syndrome Day!
“Differences are not intended to separate, to alienate. We are different precisely in order to realise our need of one another.”
Archbishop Desmond Tutu
Our family is private, but the birth of Nicholas threw a spotlight on us to an extent. I’ve now decided to use that to my advantage – to create awareness and celebrate his life and those of other children with Down syndrome.
My hope for the future is to help other families and get my message across that ‘happiness’ and ‘joy’ can be used in the same sentence as ‘Down syndrome’. We’re a happy, normal family with three beautiful boys; one member just happens to have an extra chromosome. Down syndrome is not a death sentence, nor a disease. These beautiful children can lead long, happy lives. And if given the chance, they can be a real asset to society. I know that Nicholas is going to make a positive difference in people’s lives, and most importantly, he already has in ours. Our hopes for Nicholas are good health, happiness, to be constantly aware of the love we have for him and to be given the opportunity to follow his dreams. Nicholas has brought so much joy to our family and we are so privileged to call him our son and brother.
Remember that your little baby is a baby first. It’s YOUR baby. Down syndrome will not and must not define them. I also suggest speaking to parents who have children with Down syndrome. It helped me so much and I, in turn, hope to assist other families. Yes, life will be different to what you had expected, but different is not necessarily a bad thing. I think you’d search far and wide to find a parent who regrets having that child and where that child doesn’t bring joy to the family. The most important thing is to seek knowledge and make an informed decision, not one out of fear or ignorance. We’re learning every day about Down syndrome having Nicholas in our lives and we welcome open and honest communication, be it with friends, family or strangers. We appreciate people taking the time to care and wanting to be educated. It’s all about creating awareness and being equipped with the necessary knowledge, especially if you are faced with life-changing decisions.