"You Light The Skies Up Above Me, A Star So Bright You Blind Me" Remembering all our precious children.

[fioled]

For my beautiful baby Anabelle Violet, loved and missed to the moon and back, always xxx How hard we wish that you were here baby girl.

Twinkle twinkle little star,
Up above the world so high,
Like a diamond in the sky.

For all our babies and children, big and small xx

Hello everyone. I think you're amazing MiasMummy being able to see positive points from the inquest - your attitude is a real gift and I really admire it. Hope today is going OK for you, and that your family and friends are all helping to give each other continued strength.

Lots of candles were alight last light on Facebook which was very touching to see. I was thinking of all of you who have lost your beautiful babies.

There was another picture too that a friend put up of her son's birthday party. All of his friends were there, and there was a space where my little girl should be - having fun and getting overexcited playing party games. I'm finding the utter finality of her absence is sinking in now. There is always a space where she should be. It gives me an actual physical ache when I think about it, right in my core and just above my stomach. I don't know if it will ever go away.

On MrsK I completely understand about the party, its one of my saddest things, missing out on all those things. I feel sad for myself too, as I am missing out on seeing his friends and their children because there is no need for me to be invited to those kind of things anymore. I feel very lonely.

I understand the feeling of finality too. Today, I went to my sons parents evening. I got really tearful on the walk home thinking about how I will never get to go for his parents evening and he didn't even get the chance to go to school. I spend so much of my time missing him and thinking about all the things we have done together, that I didn't really think about all the little things that he is going to miss, and when they jump out at you they are awful.

Maybe these feelings won't ever go away, but I have hope that they will ease, otherwise how on earth are people meant to survive? I read a quote somewhere that said something like the wounds never heal but the mind, to protect its sanity, scars them over as best it can. I think that is true.

xxxxx

I know what you mean about the finality, MrsK and twinkle, I'm feeling it today. I was lying on my bed with the bath running and just reading a book. Made me think back to six months after M was born, and I barely washed! I realised that everything I do for the rest of my life will be different to how it 'should be'.

Feeling really anxious about Christmas. Just want to run away this year.

I think about the finality all the time. The fact that we will never ever see her or hear her voice again until we die ourselves. No more buying her uniforms, costumes, making her a sandwich, painting her nails.

DS's behaviour has gone into complete tailspin since she died. It was bad before, now it's horrendous.

DD2 bottles it all up, desperate to please.

She lost her life, and we got a life long sentence of loss and longing.

MrsY I have been having a conversation about christmas on another board, and lots of people there are feeling the same way. Have you had any thoughts as to how you are going to handle it? For me, I am going to try and keep it as normal as possible, as my older little boy is 5, and will know if we don't do it. My little boys birthday is 9 days after christmas and I am dreading that more, as it was always something to look forward to in the weird week between christmas and new year, and now its just something to be dreaded.

Expat, your little boy is 3 yes? How much do you think he has understood about what has happened? My little boy was just 4 when it happened and he has managed to have a certain amount of understanding. I haven't any experience of behaviour problems because he was at school and we tried to keep that routine and make everything as normal as possible. I also think it must be odd for them finding their new place in the family and realising that something is terribly wrong but not actually 100% sure of what it is or why people feel as they do.

Mias been thinking of you, hope everything is going ok today.

xxxx

Yy Expat loss and longing. I yearn for her sometimes and feel utterly hollow. And absolutely mrsY and Twinkle, I feel sometimes as if there must be a parallel universe where my "real" life is carrying on. Stupid I know.

There was an accident in my town earlier today. Lots of ambulances and sirens. I hope to God that whoever was involved will be OK. It always brings it home to me that every day, somewhere, lives are changed irrevocably in the blink of an eye. And it's always been this way, but I never really appreciated it until the day that it was my life that changed.

I yearn for her so much it's painful. Her absence is horrendous.

Yes, my DS is 3. He was only barely past 3 when she fell ill and our lives turned completely upside down.

Three can be such a tricky age anyway Expat even without something like illness and loss in the family to deal with. Do you have any local children's bereavement services who might be able to help you and your children? I've been in touch with my county's service and they've been really supportive. My youngest is two, and although she doesn't understand now, I want to try to handle her knowledge and understanding of what's happened as best I can as she grows up. God that's going to be tough. Sending you (())

And Christmas. Ugh. I just don't know what to say or do or feel about it all. I want to make it joyful for my little girl, but it will be so hard. That absence is going to be all the more pronounced, she loved Christmas and we'd just started making some lovely traditions. Do we carry those on, make new ones? Stay at home, go away? Who knows.

Blimey, I'm blathering on tonight. It's one of those days.

No, we don't have anything local, we live in a rural area.

We're going away for Christmas.

I can't stand that she won't be there.

I long for her.

The line from the letter Catherine Howard wrote to Thomas Culpepper always sticks out in my mind, 'It maketh my heart die, to think I cannot always be in your company.'

And from Dora Carrington's letter to Lytton Strachey: 'I cried last night to think of a savage cynical fate which had made it impossible for my love ever to be used by you. You never knew, or never will know the very big and devastating love I have for you ... '

expat and mrsK oh yes - yearning, hollowness, and a parallel universe are all a huge part my life too...

Today was much harder than yesterday. MrMia and I are drained and resigned. Too much evidence and expert witness opinions to say that the choices made in Mia's care were 'reasonable', even though in retrospect, they ended up being the wrong decisions. Certainly, there are acknowledged mistakes and miscommunications, and there is always more that could have been done... So tomorrow we are likely to hear a verdict of natural causes. I always knew that the outcome we wanted would be a 50:50 chance. But I am not sure the inquest is going to bring any sort of closure or peace.

It's hard not to feel that Mia's death doesn't matter. It won't change anything. Except the lives of those who love her.

It seems such a lottery to what help is available. Shouldn't be so.

Those quotes are bang-on. Especially the love, so much love.

YY to the parrallel universe. I keep thinking of the diagram Doc Brown draws for to explain the shift in Back to the Future (2?).

Our M is three and a hald and has mainly been a total treasure since we lost B. She talks about him often. Since I've gone back to work she's had lots of accidents and then goes to hide. I wonder if it's because she doesn't want to give us any more upset/drama. My poor girl. Her life is different now too.

I hope we'll be in the new house for Christmas, so at least it'll be different for another reason. We certainly can't run away from it with a three year old.

One of my friends is in labour. She was induced on Sunday and we've not heard anything. My stomach is churning. Selfishly, I think mainly because I am going to have to hold a baby soon, and I don't think I can. But I don't think I can not, or it will upset everyone.

Need to drag myself to bed, but I resist so much, because it means another day has passed without my boy.

Mias Even if you don't get the verdict you are hoping for tomorrow (and I am still hoping and praying that you do) I hope that you will get some peace of mind from knowing that you did everything in your power to do right by your little girl. You couldn't have done more. xx

I too am dreading Christmas and have no idea how to get through it. But I can't not do it because of DD. I do worry about her. She's 3 as well and although she rarely speaks about what happened I know it's affected her. She's not spent a full night in her own bed since D died, and she becomes very anxious if I have to leave her at all (she wasn't like that before). I need to get some advice on how to talk to her about it because I'm not sure we've dealt with it properly really. When we go to visit her friends who have new baby brothers or sisters (most of them) she always asks "Where's MY baby?" when she comes back. It's like a knife twisting in my heart.

Twinkle I know absolutely what you mean about the loneliness. Most of my friends I've made through DD are on maternity leave with their second babies. I should be too but I'm not. My little D was the last of the new "batch" to arrive and I was so looking forward to joining them on maternity leave. I do see them occasionally but it just reminds me of what I've not got and it's like a huge gulf between us. We're moving to a new area where I don't know a soul. It will be hard and I will miss them but part of me is looking forward to starting again. Too many reminders round here of what I should be doing.

Don't be hard on yourself, MrsY! I can't even hold a baby and Aillidh was 9. I see families with three children and I die inside even more.

MiasMum, I wish there were some way to ease the pain of what you are going through, some way to bring Mia back to you, all I can do is say thank you for sharing her with us, and much, much love to you.

'We're moving to a new area where I don't know a soul. It will be hard and I will miss them but part of me is looking forward to starting again. Too many reminders round here of what I should be doing.'

I'd like to move, too, to some place where none but friends there know what happened to us.

Expat, S is probably pushing the boundaries, trying to test you. I think at that age, they know something terrible has happened but they don't get it or understand it and they're really too young for counselling. And you as parents are in less of a state to be able to deal with it than usual, so it all seems that bit harder.

Mias, you are doing so well. I truly hope you get the verdict you need.

Expat I hate the feeling that when I've left a room someone might say "She's being very brave isn't she" or "Poor Matilda, she's coping really well," whatever it is that they might say. Maybe they don't say anything, or if they did it would be meant well, but the point is that I feel like I'm something to be talked about now, and that when other mums see me they silently thank their lucky stars that they're not me and I absolutely hate it. I'd really rather spend my time with people who don't know. Let them feel sorry for someone else. I'm off. God, I sound horrible and bitter. They're nice really (!). I AM horrible and bitter. I don't think this has made me a better person, sadly.

'No, matilda, you are not bitter. I know exactly what you mean! '

I'd love to move to Glasgow, but it's impossible. We rent and have poor credit and are low-wage earners. We're unwilling to live in a shite area (been there, done that) and private renting is so insecure, we'd need to have a packet of money saved up for the frequent moves involved.

So we'll be the ones people see and thank their lucky stars it was our child and not theirs.

And DS will blurt out stuff like, 'This used to be Aillidh's, but she's dead it's mine now,' or 'My sister Aillidh died of 'kaemia'.

This hasn't made me a better person. I want to read Barbara Ehrleich's 'Smile or Die' about the whole 'You have to be positive?' Yeah? Says who? Tell me who, so I can tell them to fuck the fuck off just now and go blow sunshine up someone else's arse.

Or John Diamond's 'C: Because Cowards Get Cancer, Too'.

'There's just no sense in it.' Yeah, it's a good thing I wasn't looking for sense, either.

YY to parallel universe.

Anyone sometimes have a mind wander and you fantasize about a miracle occuring and your child lives? The docs were wrong! Or your child breathes.

I also hate the "You're so strong" line. What else are we supposed to be? It's not like we have a choice. I've been sorely tempted just to stay in bed all day, still wouldn't change the fact that she's gone though.

And I also feel like the person who makes everyone else feel as though it can't possibly happen to them too. I'm the person it's happened to so they'll be OK. I'm the woman who's child died.

Sometimes I worry that we shouldn't have taken her off the ventilator. That they made a mistake and she would have been OK and come back to us. But I know it isn't true.

Ah, MrsK, they honestly wouldn't have counselled you to take her off if there wasn't massive damage.

In our case, the decision was made for us when she developed that pneumothorax as a by product of the vent. The only way to prevent that from going further is to turn down the pressure in the vent/turn it off.

I hate the people who say 'you are so brave and strong' and then either rub your arm or pat the back of your hand!! Drives me piggin' mad. Would much rather my best friends approach. She will look at me and say 'Miserable git whats wrong with your face?'

Thanks Expat. I think it's sometimes hard for other people to understand.

Night all and ((())) to you all xx