So another week has rolled by with not much happening. There does seem to be a downward trend with his aspirates, but chickens… counting… not. One thing that has been achieved is getting the consultant, dietician and ward manager to all sit down and agree a plan with me. Trust me, this is impressive. Principally
Dominic and I are currently languishing in Great Ormond Street after what should have been a relatively straightforward operation to give him a surgical jejunostomy. Unfortunately Dominic doesn't do straightforward and we are now in our fourth week of recovery with no one being able to predict how much longer it might take for him
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.
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.