Wednesday, 2 April 2014


I feel simultaneously stretched thin and compressed.

We've just spent an hour with N's Paediatric Consultant and Community Nurse in our living room, going through the 'document of wishes' that we roughed out a few weeks ago. This session was much more in depth and addressed things like whether we would want N to be ventilated if the reason she wasn't breathing was the progression of her neurological condition rather than an acute chest infection.

Apparently we are now describing her condition as 'Congenital Centronuclear Myopathy and Progressive Cerebellar Syndrome'.

I really don't know what difference that makes, do you? The end result is going to be the same. And currently, I seem to be too small for my skin and I can't be still or move about; and my eyes are burning and my teeth are clenched and I am just horribly, awfully stuck.

I can't get past this, right now. I know I will. I'm going to have to.

But right now, I'm stuck.


  1. a description is good - it carries more power when you use it to smack people over the head just to get them to meet N's needs.
    my lad also has a congenital myopathy, though we don't know which one, A different road though.

    I'm sorry - there are no words good enough

  2. I think they are being very cruel. And it's pointless - if you were to change your mind when there was an acute situation, would they hold you to what you'd said now? Raising the subject, helping you think and talk it through was one thing, but imposing all these wretched questionnaires on you, when you have a life to live and enjoy as much as possible with your lovely children, is box-ticking of an order that can only have been dreamt up by someone with no imagination and no empathy.

  3. You are doing fine. It is okay to be stuck. xxx