Thank you for the lovely quotes, growingout, they help a lot. And for all the other posts, I'm glad that people 'got' how I felt, even though I didn't express it very well.
After I wrote my last post I felt so guilty about saying I was sad and yet not just sad - though 'happy' wasn't the right word, I can't think what is. I spoke to my sister about it yesterday, and she said that in a way it was like when a person with terminal cancer dies (she speaks from experience of this). There is so much sorrow as you know they are likely to die, stress because you don't know when or whether it will involve pain and suffering, and grieving while they are still with you; in some ways, after all these emotions, sometimes the moment of death can be a release.
Because I knew that DD was likely to die due to her condition, I had already grieved. But there was also the stress of not knowing whether she would die within me (which I could bear better) or if she would live to have a short, difficult life, which would have been terrible to watch. So we made the immensely difficult decision that we would rather end her suffering now - and yet if she had still been alive there would have been sorrow and guilt to think we had chosen this end, even if for her sake. Finding out she had already gone ahead means that we can now just grieve again, but knowing her life is better with God.
I have had too many nights with not enough sleep, going over all these things in my mind, so I hope you don't mind me voicing them here... At the moment I am not sad, I think I'm just too tired and have cried so many tears in the last two weeks that for today, the waiting time, I'm just 'here'. And bless DS, he's being particularly cute and lovely this morning.
Luckywinner - thinking of you. And remembering all the other mums on this thread who have been in this position too, I guess you'll know what I'm rambling on about even if I don't know how to say it.
Thank you again, all, for your help and kind words. xx