Monday, 18 July 2016

Fragile X Awareness month - Day 18

There have been a lot of tears in the years since the kids got diagnosed and we started to understand more about FX. I joined Facebook pages and talked to other families all over the world, we went to conferences and found specialists. We went to a lot of counseling to figure out how to survive the stress and deal with knowing we had kids with disability. I grieved for the future I thought my kids would have, playing sport, going to uni, marriage, kids. And panicked over how to plan for when we won't be here to help them navigate a world that isn't built for kids like ours. It's been a journey and we are only 7 years in.

But whenever I feel at my lowest, whenever I feel like we've been dealt too much, whenever I don't think I can cope with anymore, the universe reminds me to be grateful. Tonight I saw a policeman in the US with a beautiful kind heart had been shot and killed. I saw a gorgeous baby with brain cancer and his brave courageous mum.....and I cried.

 Then I got to go into Connors room and cuddle up with him while he fell asleep. FX is hard, our days are long and not always easy, but we will get to have a full life with our kids and so much love.

http://fragilex.org.au

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