My eyes scan the screen. I read and re-read what they had typed. They are the ones who are paving the way for me and others like me. They never asked for that “job“. No one would ever ask for that “job.” Against […]
The cold air blows through the concrete shed. It is just us in here. Still, I leave my mask around my face. I don’t want to be here, and I don’t want to have this experience. I think of my mother sitting […]
May for us has always been a month to promote awareness around Mucopolysaccharidosis (also known as MPS. I imagine because it’s pretty tricky to pronounce Mucopolysaccharidosis!)MPS Awareness Day is May the 15th. For years, I have tried to make it a ‘known’ […]
The morning sun paints the dining room, illuminating the bright yellow walls. I sit at the table with my freshly made cup of tea.My daily routine is so vastly different these days. Sometimes I am unsure what it is I should do […]
Well, it has been awhile . I haven’t been writing as much as I normally would on here due to what I can only describe as life’s little way of refocusing your attention onto something else. 2020 – what a year for […]
His school have been using it for a little while now. There’s talk of us getting our own one soon, but for now we have the use of the schools one over the Summer break. It’s an odd shape. It can’t be […]
He is the kind of kid who really helps you grow a thicker skin; he can insult you and make you laugh all in the same sentence.
Ethan’s own birthdays were a huge celebration of all things Ethan with a side of ‘F@uck you Hunter Syndrome our boy is still here’.
My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.
There are so many great things about being a parent to a child like Ethan. People tend to not know that. They tend to think or imagine our lives as sad ones or a life full of struggles and battles; while on […]