I was part of a conversation recently about whether children with Down Syndrome have a good life. The question was raised by a brave mother to be who had just discovered the baby she is carrying has Down Syndrome. Her family are encouraging her to terminate the pregnancy with the belief that the child will not have a good life. Despite the pressure from her family, this particular woman has decided to continue with her pregnancy and has reached out to other parents of children with Down Syndrome for advice as to whether she is making the right decision.
I have a lot of respect for this lady. It is very difficult in the midst of all the emotion she is going through to stand up on your own against those closest to you and it is very brave to throw questions like this one into a group of parents who are already on this journey. However, this amazing community that I am part of joined the conversation with empathy and real life discussion.
While I sit here contemplating whether Noah has a good life or not, he is at summer camp. He has swimming today, horse riding tomorrow, an adventure park on Friday. He has already done Karate, picnics in the Park, bowling, shopping and football. We are heading off to visit his grandparents on Friday, we will go camping the following weekend and then a week’s holidays with his cousins. He has just finished Senior Infants in mainstream school where one of the big highlights of the year was performing with his class in front of one thousand people in City Hall. He was on two school tours, countless playdates and birthday parties. He does swimming and gymnastics every week and while at home we dance, we sing, we laugh, we cook and we play. He is rarely sick, he is strong and he is determined. He loves his big sister, music, his friends, TV, his iPad and Pizza.
Having Down Syndrome does not mean Noah does not have a good life. He is aware that he struggles with language and he can get frustrated when we don’t understand him but he is creative and strong willed and he will find a way to make his point. He will then marvel in his achievement when you have got it!
He sees everybody in his life as a potential friend and his charm and cheeky wit just reels you in. He loves to have fun and while infuriating at times for me, he can make a 10 minute walk into a 40 minute adventure while he stops to walk along the kerbs, jump off walls, talk to passing dog owners so that he can greet the dog, count the flowers and guess the colours, pretend to be superman and dance as we wait for the green man at the crossings. He has a way of embracing life that we can all learn from.
A diagnosis of Down Syndrome can be devastating to new parents. I too was devastated when I discovered just after Noah was born that my little boy has a disability. There are very real concerns. Children with Down Syndrome can have serious health issues when they are born and many undergo heart surgery in their first year. There is no question that this is a very difficult time for parents. But children with Down Syndrome are also very strong and resilient and once those health issues are overcome, Down Syndrome in itself does not mean that a child or a family will not have an amazing journey filled with joy, love and adventures.
We are very lucky. Noah has never been sick or had any health issues. Other then having his tonsils removed, he has never been in hospital and is rarely at the GP. He is strong, fit and capable.
What do we consider to be a good life? A life worth living and embracing? Isn’t it true that every child and every family will have their challenges whether they have a disability or not? There are days that I wonder what Noah would be like if he didn’t have that extra chromosome, what conversations we would have as we drive along in the car, what we would laugh about and what his interests would be. I wonder how life would differ to the one we have now. There is no real sense in these thoughts because Noah does have Down Syndrome and I can’t change that but there are some things that I do know;
I know that our journey with Noah has taught us more about life and the family we want to be then most of the experiences that preceded it. I know that I am proud of the person I am today and I would would not be that person if we hadn’t been on this journey. I know that we have made amazing friends and we embrace experiences in life with positivity. I know that Noah is one of the most inspiring and delightful people I have ever met and I am so proud to be his mum. We know how to talk to each other, how to laugh and how to tackle the tough times and I know that our life and Noah’s life, although different for sure would not be better then the life we have now.