Thursday, October 01, 2015

October 1 Awareness - Fear

October is "Down Syndrome Awareness Month" and once again the optimist in me thinks I'll give it a crack - raising awareness, promoting inclusion - for diversity generally and Down Syndrome in particular.

For me, the journey began with fear. We were told that twin 1 had a complete AVSD (atrioventricular septal defect) - in other words - a huge hole in her heart meaning that instead of 4 chambers her tiny heart - at the size of my thumbnail had 1. Oh - and then the cardiac paediatrician asked if we'd had any prenatal testing...cos about half the babies he'd seen with this congenital heart defect had Down Syndrome.

Then all I remember is the feeling - fear, mixed with terror. We drove home stunned. Phil went tot he corner shop and bought me a family sized block of chocolate which I consumed that afternoon. He took up smoking. We cried for a week. As I cried I sewed....a patchwork cot quilt of the alphabet. There was no way that quilt was anyone's but Hannah's. My Twin 1.

And then after we'd regrouped (mostly).... I prayed. Mostly I prayed for my baby to live, and also sometimes for her not to have DS. Mostly though I desperately wanted her to live, whoever she was - I wanted to get to meet my daughter. In the image above - my twins are 10 - and we are visiting Mary Mackillop place with my Dad. I give thanks for my two monsters every day. I still know fear - but I have learned that fear of difference and the unknown alone is misplaced. And I know that facing those fears is liberating, exciting, amazing and enjoyable - yes - FUN is the best way to describe the results.

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