"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

I see your point expat but I'm with chip - without this shitty experience, I wouldn't have had Belle at all. What I had of her is precious. I'm not sure I'm in the 'lesson' or 'reason' camp, I don't understand why this happened to my family, I'm angry Belle was taken away, but I'm thankful I have a daughter, even if it isn't in the way it should be.

Such expressions of love, albeit totally different, from you both chip and expat. Thank you for sharing them. Me, I waver, between being so glad, selfishly, that I was able to experience the love and joy and daily exhilaration that Mia brought me, and desperately sad for her, that her life was cut short so unfairly and that her life experiences were limited to 13 months.

I'm very grateful to have had her. But she suffered tremendously, so if there were a chance to have her again, much as we loved her, I'd not because, to me, it would be unfair and selfish given what she went through the last 7 months of her life. Her chemo was one of the most intense, awful protocols in existence, and she was terribly ill. There's no way in good conscience I could do that to a child of mine.

It's a moot point, though.

I think he meant love in the sense of falling in love with someone though, didn't he? As it better to have loved the woman of your dreams, even if she did go off with the milkman in the end! It's probably not something I would ever say to any bereaved person tbh.
And no, I don't have that choice. But I had a life before Sylvie-Rose. And I have the life after, the half-life. And then there was the bit in the middle which was too good to miss.
Don't forget about all the lovely years she did have expat. Yes, the last months were utterly shit, for her and for you. But in time, I hope, you may be able to remember the good times and actually smile. I'm not there yet, either.

Today is 2 calendar months since she died.

227 days after her diagnosis.

I'm sometimes there, chip. So many happy memories. I try not to think, of those 7 months, or how I behaved in them. Alone by necessity, scared beyond belief, her protocol meant she spent VERY much time in strict isolation and the ILs, hmm, again, we no longer speak to them. Their actions spoke volumes.

I try not to think post 11 May, her day of transplant.

But it's very hard. I watched her die. A slow, strangling, painful death until she was put out the 9 days before. The day she went on that vent! Oh god! I went to her cons. I rang the nurses station in Schehallion. Forbidden phone, I went into the vestibule and rang. I was always calm, they knew that. I said, 'Please, someone find Professor B G*** and tell her her patient is dying up here! She is tachy to 217, her BP is through the roof. Please someone get her! She is sick of 6 times in an hour, I have had to threaten the nurse with her cons and stand guard on the sick bowls.'

I texted my husband who'd been all up with her and a mate whom I knew was across the hall, to get him in five minutes if he did not wake. Her daughter a little older than A has lost her left arm to Ewing's sarcoma now and if it recurs then she dies.

Professor was up in minutes with one of her very large trainees. Took a look at her sats and gave orders, he was to stay with me. She told nurse as much and that he was under her authority. By this time I was on forename basis with her, per her request. I begged apology, for disturbing her, she said, 'I am her consultant, and I am a professor. The final decision is mine. I take on board what they say, but I decide. You stay here, I will come back for you and Rob.'

It was like being in the presence of Professor Dumbledore.

She still died.

I held that professor; she is still, of her own volition, my friend, an extreme rarity, if others' experiences and those of even her closest colleagues are anyhing to go on. Even her protege who arrived at 1AM said, 'I'm supposed to be comforting you!'

Why did she die? Who knows?

Do I believe in an afterlife? Absolutely.

Would I do it again, a silly question? Yes, but only if I could go with what I have now, and evidence of such.

So a moot point.

What is the meaning of it all? I have no idea.

Morning girls xx

Expat it is 30 years since my 7 month old twin son died. He was born with overwhelming heart problems but fought for 7 months. His twin is got married in August to his lovely girlfriend of 12 years. They have a son who is 4.

It is 20 years since my DS3 (almost 8 years old) was knocked down and killed by a lorry. He was my baby who 'brought the sunshine back.' He was killed outside our house on the first time he was allowed to play outside the garden. I daren't think about the sight that met me that sunny afternoon. I tried to remember it a few days ago and I was physically sick.

Then we had DS4 (now 15) he is our double rainbow!!!

Many, many years have passed since our sons died. I can honestly say that this year, on holiday, I did not shed a single tear that they had died BUT I spent many hours thinking about them with a smile on my face.

What I am trying to say, in a very clumsy way, is that there will come a time (for everybody on this thread) when 'the edges' blurr a little and happier memories rise to the surface. However, I would not swop those awful early days of grief, the hours of crying, pounding headaches and the realisation every day of what has happened, I wouldn't swop them for a trillion pounds.

I wanted to say the words that I used to hate people saying to me - 'Time heals'. I know you have all probably just thrown things at the screen, and give me a v sign or two. Time does heal - slowly, bit by bit.

Thank you Shabba. I think I needed to hear that. I know it makes some people angry when people say time heals but not me... I definitely wouldn't want to hear it from someone who hadn't lost a child but I think you've earned the right to say it. If I thought I would always feel this bad I don't think I would want to go on. Love to all. Sorry I don't post very often but I do read and you are all in my thoughts xxx

morning folks xx

some people say it does, some that it doesn't. it was 74 years after her first child's death that my grandmother died. she did have 5 other children, and a good life, but she admitted she was still as devestated as ever over losing Luisa.

i think kevin wells put it well. he said time does not heal, but it anaesthetises.

i wouldn't trade her, absolutely not, but if there were a magic box and i could go back in time i would not have had her, simply because of the great deal of suffering her cancer caused her. a moot point, though.

and it's not a given, either, how much time any of us has left.

recently, a great neighbour and friend of my mother's passed away. her 6-year-old son drowned in 1979. she died of cancer and knew it was coming and was happy to be, in her belief, soon to be reunited with her son. but her last words were, 'It was too short.'

Our other children give us focus. It's simply not a possibility to become catatonic with grief because they are so young they have many needs.

The hospital memories should become less consuming expat. after Cole died I had flashbacks numerous times a day and always when I was trying to get to sleep. I would say after 6 months they started to lessen in number and even more by about a year. I still get them most days, but mostly they don't have the power or intensity anymore.

We always tried to come up with a reason why Cole got sick and then why the transplants and treatment didn't work. I think the only conclusion we could come up with was, bad luck. Seemingly simple, but no other explanation made sense.

very interesting comments here ladies. I've not posted for ages but I'm always checking in on you all.
I'm grateful for Shabba's reassurances too. I know it would be impossible to carry on the way you feel in the earliest stages of grief.
I too, hope that the hospital memories fade. It's been 8 months since my wee 5 year old angel died in hospital and it haunts me every time I close my eyes. I long for the days when I can just think about his life instead of his death.

That's why I think fioled and Mias are amazing as are all the ladies who lost their first or only child. I think if I didn't have to get up for the boys and get them to school, get their meals, what would I have done? I might very well have been a total basket-case.
Going on, when you don't have to and wouldn't be expected to, is truly amazing.

'The hospital memories should become less consuming expat.'

They already are. And it was a small part of her life, but what I posted was in the context of 'Better to have loved and lost . . . ' and, in her case, assuming hypothetical time travel, I would say no, just because she did suffer greatly. But there isn't.

Sort of on the lines with MrsDeVere, who would have let her child go had she known what the 2 years of hell would be like and then her child died.

But of course, none of us knew. We did what we did to try to save them.

And I don't think there's a big lesson in it all or that peoples' children die to teach them something and I hope lovely people liek Mia's mum don't trouble themselves trying to find one.

It just happens.

It is amazing, chip. When my gran's daughter died, she also lost her young husband. She had to walk to another country because the disease that claimed them took most of the villagers where she lived and there was no one to work, no work and scarce food. I'm staggered she found the strength to do that.

She sounds like an amazing woman, expat.

Amazing as the mothers here.

Tomorrow, the third girl to die of AML this year from A's unit will be laid to rest.

She was born 22 April 2011 and diagnosed in March, 2012.

We're going to visit A's lair and set off balloons for each girl. And have a picnic, of course.

If the stonemason's office is open we'll stop in, too, and start creating her headstone.

So bloody cruel.

At Sylvie-Rose's funeral, the priest said "Sylvie-Rose didn't get a fair shot"
So many little people who didn't get a fair shot.

I still can't think of Billie well.
I only ever dream of her ill
Her death was not traumatic in the way that many of you have had to endure.
But her illness was and I am forever stuck with the image of my child , beautiful but frail and being broken by the treatment supposed to save her.

It's cruel isn't is MrsDV.

Cole died when he was 15mo and was ill and having operations and undergoing treatment for half of his short life, so my memories are mostly of him when he was ill. I have to really think about his early months as the memories that spring to mind are pretty much from when he was ill.

My guess is it's some type of PTSD. I lived the last 7 months of his life mostly on adrenaline, fear and sadness.

What MrsDeVere and ILike said. Especially this: 'I lived the last 7 months of his life mostly on adrenaline, fear and sadness.' Yy. Her last two months. She cried at a vid clip of a flashmob. She was leaving the world. She'd cry sometimes and say she was afraid to die. All I could do was slip into bed with her and hold her and tell her everything would be allright.

So ill, broken and frail.

A child should never have to fear death.

She did. Until the day she was made unconscious via sedation after being put on a vent. She woke once, after it was in. Her eyes were wild with fear. DH and I were there, we held her and stroked her and told her it would all be allright until more sedation kicked in. She never woke again and died 8 days later.

It is PTSD.
I have it.
And it's like being at war. Having a child so sick. Long periods of boredom interspersed with intense periods of extreme stress and terror. Back to the boredom of sitting around with no time to debrief from the last 'battle' because you have to try and live a normal life while you can.
The boredom itself is not peaceful because yor stress levels are so abnormally high you learn not to recognise how stressed you are, even at 'rest'

Men who were in WW1 may 'only' have been at the front for 18mths or 2 years. But that time defined them for the rest of their lives.

I believe my cortisol levels have been forever altered. My physiology is different.
The way that children who have experienced early trauma become flat and hard to arouse but actually remain hyper vigilant. Our standards have changed. It takes a lot to wake us but when the button is pushed its like being back at the front.

If that makes any sense.