Where It All Began.
I am a married mother of two in her late 40’s living in Perth, Western Australia.
In 2011 when our son was just two years old, our three month old baby girl was diagnosed with a terminal metabolic disorder called Glycine Encephalopathy or Non Ketotic Hyperglycinemia. There is no cure, only limited treatment and it carries a life expectancy of just two years. Since then our world has been turned upside down and overnight everything about me and where I thought I was heading changed forever.
Eight years on, Alice is still with us and I’ve had to forge new hopes and dreams. I've had to readjust my goals and aspirations and change my mindset to just about everything I previously knew.
I quickly became a fully fledged special needs Mum and my life suddenly revolved around palliative care, disability equipment, therapies, medications, tube feeds, hospital stays, vomits, arse explosions and of course lashings of judgement, discrimination and the realisation that no fucker had a clue about what we were dealing with.​
In truth the journey so far has been nothing short of horrific, but I pride myself in seeing the humour in the heartbreak, the sunshine in the shit show and the comedy in the chaos. Call it an unhealthy coping mechanism but I’ve learnt to laugh in the face of the epic turd that was dumped on my family.
So, if you aren’t easily offended, want to know more about special needs parenting and don’t shy away from the subjects that most people just won’t discuss, then welcome to my blog.
If you are easily offended, closed minded or don’t like toilet humour, then please move on. There is nothing to see here.
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