Being the parent to child with complex disabilities is like living on an island. The surrounding people each reside on their own islands which on the surface appear similar but feel worlds apart. To others, my island looked just like theirs, but I knew it was so very different. Although the other islands were not too [...]
An open letter. I respect you. I really do. You obviously care and have years of experience. You haven't had a personality transplant to take this job. You want to help people, to help families like mine. You are in such a difficult position. You're the face of the bureaucrats. The ones who get to say [...]
Ever feel like you are losing control? One of the first things to disappear, when I became the parent of a child with complex needs, was a sense of control. Once I foolishly thought I was the master of your own destiny. Suddenly, the weeks ahead of me were moulded and shaped by a growing [...]
Stop looking at me! It’s the summer holidays. It has rained a whole of two days and siblings around the country are complaining about the most mundane things. Like, “MUM! He’s looking at funny. Tell him to stop." My eldest brother used to complain I breathed too loudly whilst he was watching the TV. He certainly [...]
There is something I’ve discovered, no matter how hard I try, moments still only last a second. Over the last year I have tried really hard to soak up life but time still just flies by as moments effortlessly slip through my fingers, no matter how hard I grip or how deeply I breathe.
I've been wondering: what does success look like? Take a trip to the library. It would start with me wondering up the road on a bright sunny day, listening to the birds sing, feeling carefree and spring-like. I chat to both my boys about the fun we've already had, doing crafts and baking earlier in the [...]