I've come here a few times to update since last week and then, like a teenager refusing to acknowledge that there is life outside the duvet, thought better of it and disappeared back under the covers. Not, of course, because I have any type of warm, cocooned feeling from our hospital room that I'm reluctant
there will be some respite this coming week from OPC (Other People’s Children). For people who haven’t encountered OPC in a hospital, imagine the most precocious, insistent, nosey, slightly unwashed looking, is there something crawling in their hair kind of child who has a habit of grabbing whatever your child’s favourite toy is and skipping merrily out of the room with a sweet smile on their face. Of course, selfishly the OPC serves a great purpose when your other children are around as it’s an instant friend for them to disappear into the playroom with. However the OPC doesn’t limit their presence to convenient hours in which your children are present and wanting to be amused, they want to be your best friend too. The OPC thinks you want nothing more than their company, even if your door is shut and you’ve wedged a chair behind it.
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.