Thursday, 23 January 2014

how much is enough?

Genetics just called.

There are a couple of other things they want to test for; Russell-Silver Syndrome and Smith-Lemil-Opitz Syndrome.

It seems like they are clutching at straws now. One can be done on stored blood, the other needs to be fresh; but they can take it when they knock her out in a couple of months time to change the PEG feeding tube to a button.

Apparently the talk about referring her to Guys is because they are particularly good at neuromuscular stuff.

At what point do we say 'no, this is enough'? At what point do we let it go and just accept that it is what it is?

I do appreciate that I may look back at all of this, all of my writing about it, and realise that I have been having a fully fledged breakdown about it, publicly and with imperfect sentence structure. I can't keep it inside me though.

The professionals, the hospice people, the nurses, the consultants, they keep saying 'some parents like to know, some don't want to know'. I can't imagine not wanting to know. I don't have that level of living in the now. But then, I think, IS it living in the now? Or is it putting their heads in the sand? 

I want to know how long we've got her for. I want to be able to see it coming. I want to know how it's going to play out. I want to know what I'm going to have to put her through, what I'm going to have to put myself through; and then just bloody well get on with it and somehow let all this anger and terror go and just live for the moment.

On a slightly lighter note, B left the wheelchair in the car-park at the hospital earlier this week. Just loaded her in the car then drove away. I've made a note, it's going in my sit-com and none of you can steal it.


  1. I the end I found comfort in not knowing the answers - aided by the fact no answers were forthcoming, and my son one day saying he hoped the consultant would say we didn't have to do any more tests.

    I've tried to embrace not knowing. It allows a certain level of denial - it's not just not looking at the distant dark is not knowing if there are any dark clouds.
    Then I fail and start googling for answers....reality slaps again... but I try to embrace not knowing.

    Yours is a harder path than mine, I understand the need to write about it - because you cannot find anyone to talk to who understands, not even those that think they understand, because it is totally personal.

    hang in there - I look forward to the sitcom

  2. I somehow missed this post. We chose to know, or to know what they know at any rate, I can't bare others knowing something about my child that I don't, that's probably the control freak in me.