Princess Fiorimonde, thank you so much for this post. I have needed someone to tell me what it is like from the child's pov for sooooo long without realising it.
1 I don't give her enough cuddles; we do have some which can go on for ages - watching a film together, curling up on sofa and falling asleep etc, but we don't do that often enough. We do have at least one big hug every day, but I think she could do with more.
2 I don't bring up the subject that me and dh are going nowhere but if she is worried then I do reassure her. Perhaps I should just drop it in when we're having a cuddle, that she's stuck with me for a long time? This particular aspect is exacerbated by my having ms. For some reason she has got it stuck in her head that ms will kill me, so if I'm a bit ill, and have to stay in bed, she thinks I'm going to die - this has been something she's worried about for years, but only admitted to last year. I have been trying to reassure her on this point since then, but I don't think it's gone beyond intellectual understanding into emotional understanding yet. I don't know what more I can do without belabouring the point and becoming annoying.
3 I think I know what you mean. DD's experience is more that her friends find it hard to offer continuous support and show patience with her sadness. I think they get a bit tired of having a child around who is never quite happy. This contributes to her anxiety about being at school, coupled with the fact that she's missed quite a lot and therefore is finding she has to work a bit harder (she's never really had to put her nose to the grindstone before). I think time will help with this, and probably not much else.
4 Yes, sometimes I do feel like howling, but I've always felt dh does enough of that for both of us and someone has to soldier on with 'normal' life. Luckily, for the first few weeks, I was spending a lot of time in London on my own, and could howl there if I wanted to, but mostly I've always been the type of person who doesn't do it in public - which includes dd and dh. DH would like me to cry a lot more but it doesn't help me that much. I have blurts for a day or so when some new thing pops up - usually when dd is at school, or I go and do it in my room - and then I get on with stuff.
I was very tearful as a result of this news about dd, but not any more. I just want to gird my loins and get things moving to help her; that's how I react. Having said that, I think it might also be a good thing for us to have a bit of a cry together, which we did when I first got the news. She knows I am sad, but I don't want to burden her (and it doesn't help me to give in to it too much either), and she is the type who would feel that she had to do something to make everything better if I got too upset, which wouldn't help her at all.
I am trying to keep things as normal as poss for her, but we haven't even got a Xmas tree yet. We have dd's presents but dh and I have yet to get each other gifts, there are still cards to do etc etc etc.
We still have her friends round, she is still singing in the choir, we still drag her out complaining vociferously to do shopping on Saturday morning etc etc. We do still have a laugh and a joke, but maybe not quite so much.
She and I have started a new music thing though - I pick out a tune on the piano (she chooses) and she sings along. I can't play, but I can read music and do the right hand. It's nice. We've got my brother's autoharp (an extraordinary instrument) which dd is beginning to play a bit. I've asked dh to write out the chords to some of the things we've been playing so she can strum the autoharp and sing while I play the piano badly!
Thank you so much for your time, Princess. You have really helped me focus my mind and see through the undergrowth.