I can’t believe it’s six years ago since I held Noah for the first time! As I watched him blow out his candles yesterday so full of fun and excitement, I was bursting with pride!
When I think back to when he was born of course I will admit it was a very difficult time, a time of huge fear and uncertainty but I also vividly remember the moment I knew we were going to be OK. It was only our first night, Noah was dressed in the cutest tiny yellow pyjamas, everybody else had gone home and I lay in the hospital bed with my tiny baby cuddled up next to me. He was so warm and content and he looked so safe and happy in my arms. I knew I was not going to let the diagnosis of Down Syndrome define him, I knew we would get through this difficult time as a family and I knew that I was already falling in love.
Now, 6 years on I sometimes think back to that time and try to pinpoint why I was so scared. I remember the many things I cried over and of course I know now that a lot of it was the wrong stuff. I remember watching TV ads of Dads doing very “normal” stuff with their sons and crying because I feared Noah might not do this with his Dad. Or driving around shopping centre car parks with my 4 day old son in the back and crying as I watched teenage couples walk hand in hand. What if Noah never has a girlfriend, who was going to hold his hand??? I was still exhausted and still sore from childbirth and this is what I was crying over? I can tell you now he is 6 and already checking out the ladies, this is no longer one of my major concerns!!
I was reminded of all this recently when an expectant mother posted a question on a forum for Parents of children with Down Syndrome. She is only a few months pregnant and had just discovered prenatally that her baby has Down Syndrome. Every professional she is dealing with has advised her to terminate her pregnancy and start again and she is reaching out to ask Parents for help in making her decision.
Of course this is a difficult one for us parents. We can’t be totally objective and unemotional about the topic because we are talking about children like our own. But life has taught us a lot about perspective and most of us are realists. We know that in the majority of European countries up to 90% of couples who discover Down Syndrome prenatally will decide to terminate their pregnancy.
There were hundreds of responses to the post and it was amazing to me to read them. Everybody agreed that this lady had a difficult decision to make and only she could make it but likewise everybody agreed that their lives were better, brighter and more fulfilled since the arrival of their child. There were parents from all over the world, all with different stories, different backgrounds, varying ages. In fact the only thing the group have in common is that they are all parents of a child or adult with Down Syndrome.
This is the baffling thing about the world we live in today. People with Down Syndrome are achieving more then ever before, they are attending school, working in jobs, holding down relationships, living independently and contributing to society. Parents who experience raising a child with Down Syndrome will tell you that their lives have been significantly enriched by their child, siblings will talk about their love and adoration for the family member with Down Syndrome and people like me write about their journeys and experiences openly so others can join the discussion.
When I ponder this lady’s dilemma and the responses from people on the forum it takes me back to the early days of when Noah was born. I know why I was so scared and it is not so different to how this lady is feeling now. From the moment the words “Down Syndrome” are uttered by a professional you will find yourself on a downward spiral to despair because this is how they will make you feel.
There is no discussion or debate. All those things I cried about, there was nobody there to correct me or tell me it would be different. There are no stories shared about kids like Noah who are doing all the things other kids are doing. There are no reports of kids attending school, teenagers going out with friends or adults holding down jobs and relationships. Instead when Noah was born, I was advised by my own GP to have another baby because I didn’t have the one I wanted. I was told my baby would not breastfeed, would have trouble crawling, sitting, standing, walking, running, jumping. I was told to learn sign language to communicate, that he would have a low immune system, higher instances of sickness and health issues. I was constantly reminded that our situation was not “normal”. I dread to think what might have happened if I was told all of this prenatally.
But the fact is that none of it has turned out to be true. There is plenty of help to be found for those who want it. I have had to learn to be a better and more patient parent and we have challenges to overcome but Noah did breastfeed, he did crawl, sit, stand and walk. He runs around with all the other boys, he swims, he plays basketball, he jumps he climbs. He goes to school with all the other kids in our neighbourhood, I do not use sign language and he is never sick. He has friends, he enjoys life and he makes us laugh every day.
It is true that parenting a child with Down Syndrome is a different journey to the one we expect or plan when becoming parents. There are many challenges along the way and Noah does not fit the blueprint for a “typical” child. And maybe this is the reason that the lady who posed the initial question, on receiving all the positive responses, decided to leave the group without comment. Maybe this confirms the decision she will make, maybe our sense of belonging and positivity is not what she wants to hear. We will likely never know.
I am pro choice and I believe that everybody has the right to make decisions for themselves. I am also pro debate, pro discussion and pro diversity which appears to be in conflict with the professionals advising mothers every day. The idea of living in a world where everybody should fit somebody’s idea of “normal” doesn’t sound like a fun place. I think we are all here to make our own journey through life and I hope that by being open and honest with my own experiences, maybe a young or expectant parent out there, faced with the same dilemma as this lady might be comforted by the fact that I am living life with a child who has Down Syndrome and from my perspective, this is his adventure, he is the one in the driver seat and I am simply lucky enough to be along for the ride!