No three year olds are ‘normal’, they are all bizarre alien beings that are put on the planet to perplex and in the same moment entertain their parents. But when you have a disabled alien you’re expected to be able to summarise each strange part of them for scientific, or indeed local council dissection. I document for faceless strangers how living and caring for my funny, beautiful, loving little boy negatively impacts on myself and my family. I had to go and sit in another room after a while as it felt like the worst kind of betrayal sitting cosily next to him answering questions about what a burden he was to me while he was leaning against me chatting away being about as cute as possible just to spite me.
I've been wondering recently why it is so hard for me to come and fill in this journal now. Life for the most part is happy, I've moved house, it's somewhere far more suitable for us, with lots more space and a lovely border collie puppy (nicknamed Devil Dog) called Chloe. I've been in a relationship
We had to call the family and ask them to come and say their goodbyes. I won’t go into how it felt to be told that or how it feels now to write about it. It’s still too raw. I remember screaming though.