"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

[chipmonkey]

Morning all.

fioled, I'm glad I'm not alone in that!

[mumof2teenboys]

Its a bit different forme, James was an adult when he died but I worry about how I will feel on Sams' wedding day, the birth of his first child, the first house he buys etc. All the things that James will never do, it hurts to think that Sams' special days and events will always be bittersweet.

I can't listen to certain songs and watch certain things because its too raw.

Its the loss of potential that hurts the most I think.

[MrsY]

I always analyse the future. Worried that the Mouse may go through the pain that we have.

Benedict was born in the same room as my neice had been born 6 months before. :(

I love love LOVE the Great British Bake Off. I spend the last five minutes of the show looking for the remote so I can whip it over as soon as the programme finishes.

I now usually watch all programmes on catch-up or tivo so I can fast forward adverts!
We used to watch lots of crime dramas - csi, ncis, criminal minds. Can't watch any that might include a baby or child.

Must dash - we've viewing a new house before we go and meet our friends! Hoping we can pop in a quick visit to see B at some point today, too, but that maybe too much.

[chipmonkey]

mumof2, that's it, isn't it?
My Dad died at 62. And we all thought, "Oh, he never got to retire" But that was about all my Dad didn't do! He was well-travelled, successful in his career, raised four children...
Sylvie-Rose didn't even get to smile, walk, talk.
And tomorrow, ds4 starts school and I'll be thinking "I should still have a baby at home and she'll never start school".

[mumof2teenboys]

chipmonkey

You are so right, when James died, one of the things that made me cry was the things that he will never do, he got to be 22, he finished school, but never went on holiday abroad, he never got married, he never had a child. He might of never done those things but he will never get the CHANCE to do any of them.

It hurts so much, all those things that we do and take for granted, our children will never do any of them.

[expatinscotland]

Very true, mum2. An inheritance of loss, a life sentence of bittersweetness and choking back tears to spare your other child or children.

[expatinscotland]

Oh, Mary, on the Great Bake Off. She has three children, but lost her son William, age 19, in a road traffic accident.

[MiaAlexandrasmummy]

Ladies - this afternoon, I had a knock on the door from two Christians - not sure what type - who wanted to discuss whether or not I believed in miracles.

As you might imagine, I politely declined their offer, but all I could really think about was the miracle that I want, which I know is impossible, regardless of how strong any person's faith might be, which is to have Mia back with us, safe and sound, growing and chatting and learning. Not a conversation I really wanted to delve into with two unknown people. I believe I will be with her again one day though.

Would you have done anything differently?

[OhDoAdmitMrsDeVere]

Ds1 is two years younger than Billie.
The first 2 or three years of his life after Billie died are a blur.
Too many thing ps she should have been doing.
It must be harder if a surviving sibling is the same sex :(

I have been forced into cleaning the loft. It's where her things are. It's very hard.
But I found two rolls of film and got them developed. They have a few new pictures of her.
From before she was anywhere near being sick. Even before OH was diagnosed.

We didn't have a clue what was round the corner.

[chipmonkey]

Mias, I would probably have sent them on their way!
I do believe I will see Sylvie-Rose again. I am not sure about how it works other than that. And I don't think anyone can say with any certainty that one faith is better than another. I know there are souls in some form of afterlife and there is a big part of me that thinks that it can't be haphazard, that there must be people in charge, in some way.
My father used to invite the Mormons in and talk to them, very, very loudly in the dining room! He attended Mass weekly along with my mother but I think privately thought the Bible was mainly a work of fiction. Yet I feel fairly sure my Dad is around, chatting to ds4 at times!

[MiaAlexandrasmummy]

chip I am not sure either about what really happens in the afterlife, but hadn't thought about whether or not someone was in charge!!

mrsD oh. Little new glimpses of Billie, of a family life so happy and innocent, so unknowing of the future. Precious and heart-breaking. x

[chipmonkey]

X posts, Mrs D! So difficult for you finding the photos. Like a still shot from a movie before you knew it had a sad ending.

Mias, maybe there's no-one in charge! I can just see it, milling around with fifty billion other people, going "Who's supposed to be minding me?"

[expatinscotland]

'Would you have done anything differently? '

The thing is, none of us saw it coming, did we?

We could only have done things differently if we could go back, knowing what we know now. And we can't. And to me, that's the worst part of it aside from their not being here anymore.

Another child treated in Schehallion for AML died today. She was 15, one year post successful transplant. She relapsed, went for more chemo and died as a result of it.

That's four I know of who had successful transplants, but went on to relapse of their AML and die. There is very little that can be done because the chemo is SO intense and no new drugs so it's all really harsh. So it kills the person, or doesn't work a lot of the time.

There's another we knew from there, a 13-month-old baby. She is fading away at home from her AML. No remission.

Still another person who's 7-year-old nephew is at home dying of AML. He remitted, but relapsed waiting for transplant and no more chemo drugs to treat him.

Would I have done things differently? Everything. If I knew what was coming.

I didn't.

[OhDoAdmitMrsDeVere]

Me too expat
I would have let her go at the beginning. I would have lost those two extra years but they were gained at such a cost.
But what choice did we have.
They were sick. There was a possible cure.
We wanted our children to be cured.

[chipmonkey]

I think any mother, if they thought a treatment would increase the chance of their child surviving even by 1% would go for it. I know I would.
Look at it the other way, if you had declined treatment that could potentially have saved your child's life, and then your child died, you would be thinking that you failed her.

Not the same thing at all but sometimes I see children with lazy eyes in my work. I do therapy to try to improve the lazy eye. It doesn't always work. But it does for some. I actually have very little idea which children it will work for before we start. But most parents will give a try, knowing that there's a chance the child might get 3D vision and a better 'bad" eye.
And that's only vision. When you're talking about life, of course people will try everything for their children, everything.

[expatinscotland]

Absolutely, MrsdeVere. I'd not have gone forward with the transplant and enjoyed the time we had. Of course! Her last 60 days were whatever anyone believes is hell and then some.

But we didn't know it. We went for it because it was the only chance, she might survive. There was still a 50% chance of relapse with successful transplant, and again, I now have come to know several who did have successful transplants, two from siblings, the best you can get, and went on to relapse and die.

I did everything, in the hope that she would live.

She died so awfully to us. But she was unconscious and didn't know.

[twinklesunshine]

Chip, thanks, I have been on the sudc website, was waiting until I had a more concrete cause of death before I contacted them though.

I too am always thinking of the things that he will never do, and as he was so small its endless. I try and comfort myself with the fact that he doesn't know that he is missing anything.

I am having a bad day/evening and have got myself into a bit of state, and no amount of flashpoint or criminal minds seems to be helping! I know why though, a family member is getting married on Saturday, the boys were meant to be page boys, it was planned last year, and now only one of them will be there. They all just think that it will be ok, I get the impression that they think I should be 'getting better' now, 5 months may seem a long time to them but to me its just as hard as it ever was. Ugh.

xxxx

[OhDoAdmitMrsDeVere]

Twinkle five months is just a blink of an eye sweetheart.
Family events are so difficult. They were impossible for me on the first couple o years. I still avoid them when I can.

My DM kept trying to get me to go to my aunts big birthday bash. It was on Billie's 16th birthday! She didn't get why I didn't want to go.

[Tamisara]

Miasmummy I know you will be reunited with Mia one day xx

twinkle I think that's the most horrible thing - the expectation that you will get better. Sure, life moves on, we move forward, but we don't & can't leave our children behind... the love for them is too intense, too all-consuming to just fade. Love isn't like a firework, that shines bright, then fades, it continues to burn. 5 months is nothing, it really isn't, and I'm sorry that this wedding has stirred up such feelings. I hope it passes as peacefully as it can do, and that you don't face any insensitive comments xx

Chip I wanted your professional advice on something, but will probably message you on FB if possible? Don't worry if not though xx

[deemented]

Hey ladies.

I feel really...weird atm. The boys birthdays are coming up and usually by now, i'm a withering mess. And i don't know why i'm not, but i just feel slightly panicy, a bit detached. It's almost as if he died another lifetime ago.


And to comment on the why? question further upthread.... I looked for the why too.. searched and searched, blamed myself because it was all that i could do... and then a wise lady said to me 'Sometimes it's not about finding the answers. Sometimes it's about learning to live with the questions.' And she was right. Took me a long time to see that though.

[chipmonkey]

twinkle, that's so hard for you! That you should have had two pageboys and now your lovely ds will be there without his brother. Of course you won't be fine with it! It will be a tough day.
My family had a big reunion last year, two days after Chrismas. They all understood that I didn't feel up to it last year but I think they are planning on repeating the thing this year and I still don't know if I want to go. For a start it's on ds3's birthday. Which is not as bad as if it was on Sylvie-Rose's birthday ( Btw, Mrs DeV, I can't believe your mum thought that would be OK!) but I don't like having his birthday forgotten because he happened to be born around Christmas but I know this year my cousin will be there with her baby daughter and it's as much as I can do to see her on FB and "Like" the pictures. She is a lovely baby but I feel so robbed when I look at her.

Tami, ask me anything you like!

[chipmonkey]

Sorry, dee!

Is it that you feel that you should feel worse, love? I think even deep grief does alter with time. From what people tell me, it seems to change from what we would call "acute" to "chronic" if you were speaking medically. That it's there in the background all the time but not so sharp.

[expatinscotland]

As regarding Mary the judge in Great British Bake Off, she was very open about her bereavement in a recent interview for Good Housekeeping. Though it has been some years and she now has grandchildren from her other two she said that William is still very much a part of their daily lives and family celebrations and now everytime I see her I think of how she's coped with such a sudden and tragic loss (William did not live long enough to marry/partner and have children).

[ILikeToMoveItMoveIt]

I read an interview with Mary Berry recently where she mentioned her son who died. It's since becoming a bereaved parent that I have realised how many people do lose their children.

I don't think there are many families (within the past two-three generations) who haven't been touched by the loss of a child. I think we talk about it more and are more open with our grief now (although still not open enough IMO) and also expect medical science to be able to help pretty much everyone and every condition.

Maybe I am more aware of it now because I feel part of the club and because I understand what losing a child really feels like. Before I would have the utmost sympathy, but I didn't truly understand.

dee - are you concerned that you should be feeling wobbly, but because you're not you're worried that it's going to hit you like a tonne of bricks when you least expect it?

[Tamisara]

It is 10 months today that Tamsin was born... I am getting irrationally angry on another thread, the rain is pouring here, DD1 has (yet another) cold, and isn't sleeping... aargh!

Hope everyone else is well xx