October is Down syndrome awareness month and I confess that I didn’t even realise this until yesterday when I saw some friends post about it on Facebook. Aren’t I a great advocate!
A few weeks ago, Chloe and I visited a beautiful family at King Edward hospital who welcomed a gorgeous new baby girl born with Down syndrome. One of the questions the new mum asked me was how do I divide my time – do I do 70% ‘normal things’ and 30% ‘Down syndrome things’? I hadn’t actually ever thought about it like this and then went on to say that it was more like 95% ‘normal’ and 5% Down syndrome. Over these past few weeks, I thought about what I said and how actually all the things that I do around Down syndrome (eg therapy) actually feel normal to me.
The extent of my involvement with Down syndrome to date is that I have met and made friends with some really amazing women who also have a baby or toddler with Down syndrome. I love catching up with these ladies. They have provided me with so much advice and support and it has been awesome to share our children’s milestones with each other. Yes, we do have fears and vulnerabilities that come up in conversation from time to time but I have never considered that when we have these catch-ups that doing so would be my Down syndrome activity for the fortnight or month. These catch-ups are no different to the ones that I have with my Mothers Group where all the other mums have ‘typically’ developing children. They too have provided me with advice and support and I also have enjoyed sharing our children’s milestones with them. We have also shared our fears and vulnerabilities with each other. There is no difference.
As Chloe gets older and her needs change, I am sure that I will become more involved with the Down syndrome component of her life but I guess what I am trying to say is that I don’t feel that there is much of a difference between Chloe and other ‘normal’ children. When I look at Chloe, I see a cute baby girl. I don’t ‘see’ Down syndrome. On most days, I actually forget. There is so much more to Chloe than her condition. Down syndrome is just one small part of her and my only wish for her whole life is that people who meet her see that too.
All of my friends and family love and accept Chloe for the beautiful baby that she is. There have been a few people who haven’t known what to say and there have been others who feel the need to constantly tell me how beautiful children with Down syndrome are. I understand that this is because they want to provide me with some reassurance but I really don’t need that. For the most part, I don’t feel that having a child with Down syndrome has really been all that ‘different’.
|Emma loves her baby sister and they have a ‘normal’ sister relationship|
Being a parent is challenging. Full stop. I have experienced challenging moments with Emma and I know that there will be more to come as she gets older. Same goes for Chloe. I think that all parents experience challenges. It is something that you just can’t escape. And yeah, I still have worries about Chloe’s future but on a day to day basis, we have moved on from all that. Our family is just getting on with life and doing our ‘normal’ everyday things.
When I walk around the shops with Chloe, I look and feel like a regular mummy, scooting around with my pram. And why shouldn’t I? I have had many people stop and admire Chloe and no one has ever looked at me with pity. I can’t even believe that there was a time where I thought they would! I have learnt so many things about the world and the people in it this past year. I have also learnt so many things about myself and how out of touch I have been my whole life.
I believe that this word ‘normal’ creates such a barrier between people. What is normal to me is different to what is normal to others. But that’s the thing about the world. It is made up of so many different things that maybe ‘different’ is actually the true definition of normal. My husband and I are married, our parents are still married but there are many families where this is not the case. Having parents who aren’t together is completely foreign to me. Having a blended family with step-brothers and sisters and step-parents is also foreign to me. But do people who are in these situations think that they are normal? Of course they do and so they should because that is their version of normal.
When I discovered that Chloe would be born with Down syndrome, I was scared that my life wouldn’t be ‘normal’ anymore. That the white picket fence I had built around my perfect life was going to come crashing down. But do you know what? It didn’t. It’s still there and I understand now that my version of a white picket fence is so different to my next door neighbours and also from the people across the road. And in the long run, it really doesn’t matter. As long as we are all happy.
My wish for Down syndrome awareness month is for everyone to see past their own definition of ‘normal’ and open their eyes not only to Down syndrome but to all the differences that there are in the world. Our differences shouldn’t be what separates us. Our differences are an opportunity to learn and to grow and to experience life in all the shapes and colours that it comes in. Underneath it all, we are all the same. We are all human and we all have the same need to be loved and accepted by those around us.
If there is something about Down syndrome that you would like to know, please ask me. This month of Down syndrome awareness is a great opportunity to change perceptions and to make this world a more accepting and understanding place.