Every so often I have a bit of a google around, looking up the junior's various conditions singly or in various combinations. It's because some of the things are quite rare, and one of them is very newly recognised as a thing, so I kind of like to hear if anyone has some new thinking about any of it. Because of Reasons he has had tests sent to Paris, been treated in Barcelona and has doctors in Canberra and Sydney. This tends to make it difficult to just have a yarn to the doctor any old time I have a question.
So a while ago I was doing my googling and I found an abstract
from a conference in Portugal that sounded pretty darn exciting, because
it sounded like someone else had exactly the same situation that
junior had, and some pretty darn smart doctors were thinking about it.
And then I realised, of course, that it was my junior that they were
talking about and not some other kid at all. And that they didn't know
anything much either, but wanted to tell all the other doctors all about it.
No one else would recognise him, except us and his very own
doctors, but it's a very peculiar thing to have such particular and precise and accurate information rocketing around the world, and yet information that is so utterly unlike the junior's actual life.
I was very
disappointed that it wasn't someone else. I desperately wanted us to be
not the only ones in this particular situation. Which is a terrible
thing to think, really, when you think about it even a tiny bit. Which I
have since, but didn't so much when I first felt that thud of
disappointment and oddness when I recognised the junior in the medical