When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Saturday, December 3, 2011

International Day for People with DisAbility

What a great day...well apart from the rain. But then us BrightStars seem to attract the rain when we plan to perform outside!

We had the pleasure of dancing at International Day for People with Disability, with our BrightStars.

After the dancing I had a really good chat with a Mum who I haven't seen for a while. Its so good to talk to friends outside the walls of the hospital or various places we take our children for their therapy. We caught up on the last 6 months or so....the highs and the lows we have been thru, and about where we are heading next year with our children....The if you don't laugh you are going to cry....But more importantly we talked about how blessed we are to have these amazing children in our lives. How often children like ours are referred to as 'special' children...but how we feel that we are the 'special' ones, special that Veronika chose us to be her family, and special that her little man chose their family.

As parents we often think we get to choose who our children are, but its more a case of our children deciding that they wanted to be in our family. Yes its not an easy job, being a  parent, let alone being a parent of a child with 'extra' needs....but WOW its worth all the effort.

When Veronika smiles, everyone who sees her smile, smiles with her. She some how has been Blessed with the Ability to make a person smile, even when they are having a really hard day. For that I am grateful. I guess that I decided a while ago that if Veronika could change how one person views people with disAbilities, that she could have the Ability to make people STOP and enjoy life and not rush through it, to make people see that people with disAbilities are real people, people that contribute to Society for the better, then the world would be a better place. I think that Veronika has opened many peoples eyes, to accept her for who she is, that she is not the little Downs girl, but that she is Veronika, and she happens to have DS and CP and a Congenital Heart Defect....but none of her diagnosis define her. Yes they are a part of who she is, but not what she is. And the flip side of that.....I am often known as Veronika's Mum, but very proud to say that yes I am Veronika's Mum, and I love her to the moon and back, and WOW look how far she's come.

May 2008....

to now.......

1 comment:

  1. You go, Kylee. So important to get the message out there, that who we are IS the most important thing. Veronika is wonderful and her contribution is eternal xx