World Down Syndrome Day

I absolutely wouldn’t change a thing, my little Huxley Bear

This week is Down’s Syndrome Awareness Week and as such I owe it to my amazing little man to devote this entire blog post to him.  My little Huxley Bear.  Admittedly he is entirely unaware that he has Down’s Syndrome.  I think all his wee pals at nursery are also entirely unaware that he has Down’s Syndrome.  Most of the time I am completely unaware that he has Down’s Syndrome.  Because when I look at him, I see my gorgeous, happy, little boy and not Down’s Syndrome.  I hope one day we live in a world that will see Huxley before they see his Down’s Syndrome. But at the moment, we don’t.  And that’s what this week is all about.  Raising awareness about Down’s Syndrome and showing what an incredible difference people with Down’s Syndrome make to the lives of people around them.

I am, without a shadow of a doubt, a better person for having this little champ in my life. He has brightened up my world in every way.  If you had asked me before I had children what I hoped they would achieve in life, I would probably have told you I hoped they’d do well at school, go to University and get a good job.  Do you know what I want for my children now?  I want them to be happy and I want them to be kind.  Having children with disabilities makes you redefine success and achievement.  I have Huxley to thank for not having to go through my entire life with these narrow minded expectations.

I remember when I was told that they thought Huxley had Down’s Syndrome.  I think I felt more numb than anything else.  I thought about Daisy and how her condition didn’t change how much I loved her and I knew that it would be the same with Huxley.  I knew, from some online reading, to expect delays with meeting milestones and for him to have some level of learning difficulty.  What I didn’t know, and what never comes up on a google search, is how unbelievably super awesome he is.  I could not love this little man more if I tried and I absolutely wouldn’t change him for the world.

Huxley has an ENORMOUS personality.  He is funny.  He is caring.  He is sensitive.  He is a mischief maker.  He is a whirlwind of energy.  He is inquisitive.  He is clever.  He is loving.  He is determined.  This little man, without being aware of it, brings an incredible amount of joy to a room.  He has an innate ability to lift the energy in a room and make people smile.  You can’t help but be happy watching Huxley.

He has blown all my expectations out of the water.  He his achieving everything so much quicker than I thought he would and he has proved to me that his Down’s Syndrome is not going to limit him in anyway.  He will be encouraged to give everything a go and that if he wants something badly enough, he’ll manage it if he puts in the effort.  He will never be allowed to make his Down’s Syndrome an excuse for not doing something.  The Tidy Tyrant can’t wait to buy him a climbing harness.  I can’t wait to buy him a balance bike.

There has been loads of stuff on Facebook this week about Down’s Syndrome Awareness Week.  I think most of you have probably seen this youtube video of 50 mums and their kids with Down’s Syndrome singing and signing along to Christina Perri’s song A Thousand Years.  It’s bloody lovely.  I thought I’d share it again just incase any of you have somehow managed to miss it.  I’ve been practising the signs and singing it to Huxley.  He just looks at me like I am mad.  Probably because I am a truly awful singer.  Perhaps I should stick to the signing and not the singing!

World Down’s Syndrome Awareness Day is on Wednesday 21st March.  Chosen because people with Down’s Syndrome have 3 copies of chromosome 21.  To celebrate this years awareness day we will be joining the #lotsofsocks campaign.  We have got ourselves some of the official socks but you can show your support by wearing odd socks and shouting it from the rooftops.  Get those socks on and upload some pics.  Let the world know that people with Down’s Syndrome are as vital a part of their community as anyone else.

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