It was exactly a year ago today that I received that phone call. The one where I was told that my unborn baby had Down syndrome. In that moment, my life changed and I completely fell apart. But over the last 12 months, I have managed to put myself back together and I believe that I am now a better, stronger and happier version of my former self.
Sometimes it takes life to come crumbling down around you to be able to really find yourself and to put things in perspective and to maybe even become a better person. And looking back at where I have come from, what I have been through and where I am now, I am so grateful.
For my entire life, I have been extremely lucky. I have never had anything go ‘wrong’ that was beyond my control. That was until my Dad was diagnosed with cancer early last year. Fortunately, my Dad has recovered well from his surgery and he will be around to annoy us for a very long time yet. But it was when we first received that news that I realised how fragile life really is. I certainly didn’t expect it or hadn’t even thought that my Dad getting sick was a real possibility. But as I have learned, anything is possible. And I also see how self-centered I was to not even consider the possibility that I could actually have a child with special needs.
Every day, we move through life going about our business, doing what we have to do and not really thinking about how the comfy rug we are standing on can actually be pulled out from under us at any given moment. We take life for granted and why shouldn’t we? We are all busy after all and why worry about what bad things may happen? If we worry about that, we will miss out on all the good bits that life has to offer and it’s these good bits that we should be appreciating every day.
Life delivers so many amazing things but it also hands out things that we don’t plan or that we don’t want. Marriages fail, family relationships breakdown, financial pressures take their toll, loved ones become ill or even leave us before they should. Sometimes things happen that we just can’t change or control and as the saying goes, shit happens. But life goes on and we have to pick up the pieces and keep going too. And perhaps this is an opportunity for us to find a way to live a better life.
When I first found out Chloe’s diagnosis, it was something that I desperately didn’t want and I spent so much time trying to make sense of it all. I spent hours, days and weeks asking ‘why?’ over and over and wondering if maybe I had done something differently, then perhaps this wouldn’t have happened.
It felt like someone had died and during that time, I felt like I was never going to be happy again. I was so scared of the future. I even asked a friend from my Mothers Group if I would ever laugh again. “Of course you will,” she said but I felt so bad at the time that it just didn’t seem possible.
About a month or so after Chloe was born, I finally faced her condition and accepted the fact that it wasn’t my fault, there is no explanation as to why it happened and ultimately, there is nothing I can do to change it. When I reached this point of acceptance, I found peace. I have spent the past 12 months just getting on with things and I can honestly say that yeah, I am truly happy. Life is good.
Chloe’s condition is really not the end of world and I know that I am going to do the most amazing job as her Mum. Chloe is a gift and she has changed my life in so many amazing ways. I see the world so differently which can only be a good thing. I am inspired to live a fulfilling and happy life and to love my loved ones more than I ever have before. Acceptance has saved me. Sure, I still have my moments where I am saddened that my child has Down syndrome. But these brief moments don’t consume me like they did 12 months ago. There is so much more to Chloe and to my life for that matter than Down syndrome. I have way too much to be happy about. And anyway, look how seriously gorgeous she is!
Ironically, I also had a visit today from my new Local Area Coordinator (LAC) from Disability Services. She had in her notes from the previous LAC that I was struggling to come to terms with Chloe’s diagnosis and that I was very up and down about everything. That was when Chloe was about 3 weeks old. I was very happy to tell our new LAC how far I had come, how different things are now, how great I feel about life and how well Chloe is doing. It feels so amazing to have reached this point – especially when 12 months ago I didn’t think I could.
One of Emma’s favourite movies is Tinkerbell and one of my favourite scenes is where Silvermist is trying to train Tinkerbell to become a water fairy. (You can watch the video clip here) When the dew drop that Tinkerbell has picked up from the water explodes in her face, Silvermist says to her “Shake that one off, just shake it off! You can do this!”
And now that’s exactly what I do. When things don’t work out the way I want, I just shake it off and keep on going because I have a life to live and I know I can do this! 🙂
Bec Smith says
So true Suz. And it has been amazing journey seeing you come so far. You truly are an inspiration!
Lots of hugs from one T21 to another…. x x
Love it. as a mother of a gorgeous little boy with Down Syndrome (born May 2011), I can relate to most of what you say. ‘shake it off’ – brilliant, will remember that!