Saturday, March 22, 2014

World Down Syndrome Awareness Day

Yesterday was World Down Syndrome Awareness Day. 
It's on the 21st of March - 21.3 representing the third copy of chromosome 21.

I know a little about chromosomes. I even have my very own geneticist, Jo who has known over the past nearly 11 years, my biggest fears and worries about my kiddos.  Having had two with salt-wasting CAH (chromosome 6 affected) and one with Down syndrome (chromosome 21 affected), can I say I know a little about chromosomes... probably not really. It's a very big complicated field. But from a human perspective, I think I can a little.

It's funny how our heart muscle works. How at precisely the same moment in time, it can feel both heartache and love. That's just one of its mysterious gifts. On World Down Syndrome Awareness Day, my heart feels like this alot. At exactly the same moment, I feel a breath of so much love, so much awareness for people with Down syndrome and yet... at exactly the same moment, I feel the heartache of loss, my own loss of a baby with Down syndrome. And at times on this day as others celebrate the gift of such an amazing child in their life, I think about my gift, gone before she had the chance to stay, for people to get to know and love her. I often would think it was selfish of me to feel this way. But now instead of fighting it and telling myself to suck it up and let the self pity go, I embrace it because it reminds me that my daughter still matters to me and while she still matters she still teaches me....

... and yesterday I was reminded of a beautiful experience I had, of how these special people teach us so much and how privileged I am to be a part of that.

It was a cold blustery day at the skate park bluff in Devonport, the year after we lost Charlotte, and I had left Hallie at a birthday party and headed to MacDonalds to warm up with a hot chocolate. As I sat down, I noticed sitting nearby a lady with Down syndrome a little older than me, and her Mum, quite a bit older,  having Maccas. As they got up to leave the daughter had dropped her glasses case on the floor and had not noticed. It was still pouring with rain outside as I jumped up immediately and grabbed the case off the floor, excited at this chance to speak to them.

As I caught up to them at their car, I handed the case to the daughter with Down syndrome and said, "you dropped this inside". She looked at the case, looked at me and grabbed me in the biggest tightest bear hug, I have ever had. Because she was a fair bit shorter than me, her head rested on my fast beating heart and I hugged her back just as fiercely. In the pouring rain I could not help crying. Her mother touched my arm and looked softly, questioningly at me. 

As the rain beat down on our heads, I told my story of baby Charlotte and her Mum cried and then cried harder as I told her how amazing I thought she was, and what a beautiful gift her daughter was. I looked at her daughter and told her how special I thought she was. I truly felt so much love for these two strangers I had just met. I suppose part of me imagined that's what my future would have been like.(especially the eating at Maccas part) ;)  

During this whole time, her daughter stared intently at me with her beautiful almond-shaped eyes and seeing the love on my face for her, and just knowing that I had an extra special connection to her, she gently placed her hand on my cheek and wiped my tears with her thumb and gave me another bear hug, giving comfort to my heart in a way that only she could.

I am so grateful for World Down Syndrome Awareness Day, for all that it teaches us about support, acceptance, love and awareness that people with Down syndrome are really not much different to you and I.... they just know how to love better.


Crystal Conkie said...

That was just beautiful. When in was growing up my Mum use to work for family services in QLD and later ran a program in Hobart and I had the privilege of going with Mum and interacting with her clients (not sure I like that term) and I use to have the best time I think people with down syndrome are born with extra goodness and love they see the beauty in everything when sometimes we are struggling to at times just see the light. I know your little Charlotte is shining her light and goodness down on you :)

The Jacks said...

I'm sorry that we never had a chance to meet Charlotte in this life, but i can't wait to meet her in the next. Such a lovely thing to have the knowledge that you will still be able to raise her.
I guess that doesn't take away the pain of right now though.
Love you <3 xxx