Monday, 20 March 2017

World Down Syndrome Day 2017

Another year has rolled by and, here we are, celebrating World Down Syndrome Day again!

Why celebrate World Down Syndrome Day? When your child is diagnosed with Down syndrome, there are parts of your life that change forever. You are thrust into a world of medical appointments, therapies, advocating, researching, and days when you are on an emotional rollercoaster which would rival any theme park ride. It can be tough. There are days when you feel resentful; not of your child, but of the diagnosis that has robbed them of their health and their acceptance by society. There are days when you are angry at people's ignorance, and furious at the stares and the pointing as you walk through a shopping centre. There are days when you want to cry. No..... there are days when you DO cry, because you feel overwhelmed. You are tired of the appointments. Tired of the phone calls you have to make to get the support you need for your child. Tired of feeling like the neuro-typical people in the world do not understand your child or your life. And there are days when you are just plain sad, because people don't see your child through the same eyes you do. They don't see their beauty, their spirit, and the wonderful things they can offer the world.

Since I knew of Felix's diagnosis, half way through my pregnancy, I changed. I began to see life differently to the way I had seen it before. I started to see how precious life really was. Felix's life, outside of my womb, wasn't guaranteed. We were told "This isn't going to end happily." He was expected to pass away before he even took his first breath. Each day from that point on, although tainted with grief, was a gift. I celebrated each movement and kick. I got pregnancy photos taken, and some amazing friends booked a 4D scan so we would have as many photos of our little man's face to remember him by if he passed. A diagnosis of Down syndrome, at that point, became irrelevant. I was in love with my baby just as I was with my babies before him. The love was just as strong even though he wasn't "perfect" in the eyes of the world. In fact, I felt a fierce protectiveness over him that I had never felt before.

My love for Felix was strong during my pregnancy but, when I laid eyes on that little face and saw those facial characteristics, so typical of a baby with Down syndrome, that love grew and filled my heart so much it could have burst. Nothing has changed in the past six and a half years. Felix has taught me to embrace life, to take risks, to love deeper, to be patient, to slow down, and to laugh more. More than anything, he has taught me to laugh. Not a day goes by that Felix doesn't make me laugh. He is so intuitive, and is so empathetic if someone is feeling sad or low. One smile, or funny comment from Felix, and I feel better. He loves life, and that love is infectious. He jumps in puddles, he lets the sand run through his fingers, he notices the tiny bugs in the garden. If the moon is visible in the sky, during the daytime, he will show me. He loves his family and his friends and loves nothing more than giving huge hugs. If Felix loves you, and you don't like anyone in your personal space, he will rectify that really fast!

So, why celebrate World Down Syndrome Day? For me, it's a day that celebrates love. It's a day when I take some time out to reflect on how Down syndrome has impacted on my life. It's a day to celebrate diversity and the lessons we can all learn from people whose paths are different to our own. It's a day to recognise ability, and the fact that people with Down syndrome are capable of incredible things. It's a day for me to be thankful for the people I have met because of a tiny little chromosome. These people have become such an important part of my life, I can't even remember what life was like without them. It's a day to be thankful for the family and friends who are a constant support to me, and love Felix unconditionally. It takes a village to raise a child, and Felix's village is doing a fantastic job!

More than anything, World Down Syndrome Day is a day to celebrate Felix's life; the life of a six year old boy who loves to play in the dirt, and climb anything and everything. A boy who is obsessed with the alphabet and loves to read. A boy who loves to collect the eggs from his chooks and throw them some grain. A kid who has an amazing sense of humour, and laughs harder than anyone else at his own jokes. A little boy who is so polite, he even says thank you to the Doctor after a blood test, even after yelling "stop please" when the needle went in. A little boy who loves to rough house and sometimes gets a bit carried away and has to be told off. A kid who can make his own sandwich and can make me the best cup of tea. A kid who is excited to go to school, every single day, and even asks to go on the weekends. A kid who chose me to be his Mummy. I will be forever grateful!

Happy World Down Syndrome Day!

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