Brilliant article by a mum describing her experiences of having a child with CP in today's Guardian

[chonky]

Notes on a resurrection

That had me in tears but also feeling angry. Why is it important in these inspirational stories that the child starts to do stuff. The message being if you try enough miracles do happen.
My dd has severe CP and we never read stories about the ones who don't tap or start to talk etc. The ones who have fits and remain as they will always be and what that feels like.
Sure, the hopeful ones are nice but they are unrealistic too.

Need,I know you are in a very dark place at the moment.
Thinking of you.
(Have you looked at my advice on other thread re switches?)

XXX

needmorecoffee, I agree (my dd has PMLD and no amount of therapy is going to ever change that - fact - if only it could ). However I did identify with a lot of the feelings from the early days, and the way that she described the impact it had had on her relationship.

yes, the early day stuff resonated. We knew from the beginning but were sent home from ICU with a brain damaged baby and no follow up. weeks of screaming and fits followed.
And the relationship. When do people geta chance to 'you know what'? with a disabled child. dd goes to bed atmidnight, is up several times at night and up at crack of dawn. I'm shattered all the time.

NMC, I'm just post-partum but do email me (TotalChaos was going to pass on my email) - I don't have practical help or experience on offer but would like to maybe help make things a touch more bearable.