When we lost Benji two years ago, I lost even more than my beautiful, loving, brave and patient child, my daughters’ brother and confidante, my teacher and guide in a world suddenly changed. I lost a community of other families with complex needs, with undiagnosed conditions, of self-advocates passionate about disability rights. I lost a … Continue reading Jumping back in
Seven years
My littlest child will turn seven years old this week. Seven years from her abrupt arrival as a tiny, furry, dark-eyed little thing have flown by in a flash. Yet seven years has also been ample time for her to turn into a bigger, bouncier, still dark-eyed, awesome human being. One who hugs her friends … Continue reading Seven years
Year’s mind
There’s an enigmatic note in my diary for today: Start doing more. A reminder, an instruction, perhaps an encouragement, to self. Some past version of me must have felt that it would be reasonable, sensible, self-caring even, to allow myself one year. One year … to what? To grieve? To wallow? To readjust? To work … Continue reading Year’s mind
Ten years ago
Although a disabled is a joy, a blessing, a gift, and above all still a child, navigating an ableist world when your child is disabled is exhausting, expensive, stressful and soul-destroying.
A year lost
A year ago today, and a week earlier than most, we said goodbye to my daughter’s last birthday-party guest, made our last family trip to the supermarket, pulled all three children out of school, and started shielding. Thus began a year that passed in a flash; a year that lasted an age. A year that … Continue reading A year lost
Journey’s end
Our guide on this journey-of-a-lifetime was a little boy...
Dear Cabinet Secretary…
We’re not asking to be first. We, of all people, know that the elderly, clinically vulnerable and healthcare workers must be the first priority. We’re not asking to be first. We’re just asking not to be last. We’re asking you to honour your promise.
But what about Australia, Mummy?
As we emerge from covid’s shadow we will find that supporting the most vulnerable, marginalised, and discriminated against is a good place to start in tackling longer-standing but no less existential problems.
Overwhelmed
A few days before Christmas, I went as a parent helper with my daughter’s class to a carol service: shepherding seven-year-olds along frosty pavements, trying to keep their wiggly crocodile in line, shushing them as they waited excitedly in the pews. To be honest, it was the last thing I wanted to do when I … Continue reading Overwhelmed
Cleaning up shit
At 4am this morning I was cleaning up shit. Because that's my job. (Except, as a carer it's a job I'm expected to to do for nothing. Nothing being very slightly less than the insulting carers' allowance that those who can't work alongside caring get. Which is slightly less again than the pitiful minimum wage … Continue reading Cleaning up shit