In early 2011 my son Connor, was diagnosed as Autistic and Mosaic Fragile X, he was not quite 2. It was both shocking news and an explanation of the incredibly hard few years that had led to that point. But I knew, that was just the beginning for us, we still have Connor's whole life ahead of us and since then his baby sister Merryn has also been diagnosed FXS.
Friday, 16 December 2011
Little Steps
What a lovely day. Every little victory is so hard won that it makes it exceptionally sweet.
Moment 1: For Connor's first birthday his lovely aunty gave him a little square trampoline because he has always loved to jump. For a very long time he wouldn't get on it, then he wouldn't jump on it, then he would only jump on it if I held his hands. Today my boy walked up to the trampoline, got on it and jumped all by himself. I managed to get a short little video of it. Such joy on his face.
Moment 2: Merryn adores her brother. Now she is mobile (8 months old and crawling and pulling herself up on furniture, I'm in so much trouble with her) she follows Connor around as much as she can. He adores her back and tries to play with her, but is generally a bit rough. This afternoon he spotted his beloved iPhone (ok really my iPhone but with some games on that he loves) but the only path to me and the phone was over the top of his sister. With delicate precision he carefully placed his feet so he wouldn't step on her despite his excitement. It showed such thought and care, he got a big hug and kiss from his mummy.
These days I'm a stay at home mum looking after Connor, 2 and Merryn, 8 months (as at Christmas 2011). In my previous life I worked in the Computer industry mostly with websites and databases. I've lived and worked across a number of cities in Australia like Brisbane, Sydney and Melbourne, as well as in the USA and Canada. I'm now based in Brisbane and haven't had the chance to travel much since starting to have children a few years ago.
I started blogging as a way to cope with the ongoing stresses created by Connor or more specifically his diagnosis. Connor has Autism and Fragile X, and while that has massive implications for his future it also has implications for my health too as I am a carrier. I plan to write about our ongoing journey with the syndrome as well as fill in what has happened up to this point on my blog MyFragileXBoy.
Update: Merryn has now been confirmed as having Full FXS too.
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