So, my kid has Down’s Syndrome. I never really knew what Down’s Syndrome was, I could easily identify it and tell if someone had Down’s Syndrome but never understood it.
Its basically a scenario where usually at the point of conception the foetus has an extra chromosome (21). Where two chromosomes are expected you end up with three. In most cases having one more of something is usually a good thing. However when it comes to chromosomes it seems the additional results in slowed learning and a few Down’s characteristics.
I am writing this on the evening my second son was born. When he was born I noticed a few Down’s related features but put it down to him being born at 39 weeks. I mentioned the look to my wife who assumed I was implying he looks like her side of the family at which point I just dropped the topic.
Later that evening a consultant came to see us to confirm our son does indeed have Down’s. The realisation of this broke me. I am not a very humbled or religious person, I am driven and focused but tend not to stop and enjoy let alone be thankful for everything in my life. Deep down I am thankful in my own way but I don’t express this openly. Unfortunately I can be quite judgemental with little remorse when something frustrates me. I am adamant my sons additional chromosome was indirectly my fault. I didn’t intentionally cause it to happen. But felt my actions or thought process had led God or the universe to “balance my books”. I felt it was a way for him to punish my wrong doing by punishing my child.
This broke me.
I am far from the perfect husband. In fact, I’m an appalling husband, you just need to ask my wife.
I do however try to be a good dad. Prior to Saajan, my second son, I had Arjun. Arjun has been the apple of my eye from the moment he was born. He brought out feelings in me I thought I never had. We are completely besotted with each other and just inseparable. Arjun is perfect. What’s funny is I see myself in him everyday with his little mannerisms like sticking his tongue out while he is concentrating. The way he just loves to get involved. I feel I’ve always known him, maybe connected with his soul in a past life. Some might say our relationship isn’t healthy as we both suffer from anxiety when we are initially separated but I wouldn’t have it any other way.
So the thought of something I have done or something i simply haven’t done right impacting my child really tore me up. Breaking down randomly, struggling to come to terms with the thought that Saajan isn’t perfect. He isn’t perfect because he has a learning difficulty and has visual signs of Down’s syndrome.
This morning I went home from the hospital to feed our dog who hasn’t been very well. I took her for a walk to clear my head. This is something I’ve become accustomed to doing for years, it’s something about the early morning air, the fog, the crisp breeze that lets you just get lost. I don’t meditate, but this time in the morning really let’s me just find myself.
I kept questioning why this has happened. Is it because of the way I am? Is It the things I’ve done that have caused this to happen to my son? Is god punishing me or us? Why is he paying the price?
Harps brought up a funny point that really makes me hate our culture. People just have a habit of talking about ‘nazar’. This is an evil eye, jealousy. Harps doesn’t believe in this, and nor do I. I don’t believe this exists but the truth is it probably does. That when you have things going right, something will inevitably go wrong. I have everything I could ever wish for. What people don’t see is how hard I have to work for it, often sacrificing time with my family. This aside, I have also been a firm believer that problems are opportunities. So even if things go wrong, I’m keen to just take it all in my stride.
I have no doubt I will do my utter best to be a good dad to both my sons. I just can’t help but struggle to understand why this might have happened.
I came to the realisation that yes Saajan has a learning difficulty. But unlike Arjun and I, he will undoubtably have a much more innocent view on the world. Arjun currently does as he is very young, however as he gets older; If he follows my traits, he might get a little arrogant in his adolescent years.
My experience of people with Down’s syndrome has always been positive. Be it seeing children playing or adults offering hugs or smiles to passers by. Those infrequent experiences give me a very reassuring feeling.
Having a child with Down’s I feel will be a positive thing. Saajan is a gift. Unlike Arjun and I, he is such a special gift. He has an extra chromosome which makes him very special. He has a head start. He won’t feel hate or discrimination. His innocence will last a life time.
I always loved seeing the world through Arjun’s eyes. On holiday or his appreciation for little things. Not a single day goes by where I don’t smile at the things he comes out with. The love he has for his brother melts my heart.
As a family we can all now see the world through Saajan’s eyes. We have been blessed to be able to see the good in everything and really appreciate the world for what it is.
That is something that has been missing from my life. I lack empathy. I don’t always see the good. Recently I feel I have become the first to vent if something isn’t done to my satisfaction. But the truth is, not everyone is like you. Nor is everyone normal. What you do have is people that are very special, like a Saajan. That I feel I am blessed to father, because over our lifetimes I can learn so much from him and become a much better person.
He is a very special soul, Harps thinks he has chosen us to love him and give him the perfect life.
I don’t think she is wrong. He truly is a remarkable soul.
Harps is a phenomenal mum, her health has been up and down. She had an emergency c-section, again. But straight away, I have no idea where she has found her strength but she seems completely un-phased. She is determined to be the best mum to Saajy.
More so he has amazing aunties and uncles. My sister in-laws are amazing. I love them like my own siblings. Their love for my kids is unconditional, you can see it. The way they drop everything for them, for us. Harvs, Goovy love you both loads! X And Indy! Thank you for being there. Helping us through our day to day.
The truth is, I don’t want Harps to go through post-natal depression again. I’m not one to talk about my feelings or to share how I feel. I just keep quiet, and get on with it. I wrote this so she knows she has everyone behind her including me.
The truth is, I wouldn’t have wanted it any other way. This gorgeous little man is going to change our lives for the better.