"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

shabba that is the bravest admission I have ever seen written. xx

I dont even believe in God - it was just my first thought when I knew Gareth was dead.

Everlong....I appreciate that. xx

Thank you all. I had the doctors today, then took DD1 out & treated her, so was a bit nervous about checking back in.

Shabs I am so sorry (((hugs))). Reading what you've written, it's obvious that it was normal tiredness that you were suffering. I'm guessing everyone has those moments, and in the mist of times they are forgotten. When something awful happens afterwards, it must get ingrained. Not only were you a bereaved mum, but you were also a normal mum, and I guess us bereaved parents must be (or at least feel) the need to be superhero like, to not have normal emotions, as we know what's at stake.

Thank you for sharing, I am so sorry that you went through that - in fact it's brought tears to my eyes (((hugs))) xxxx

I agree miasmummy xx

xx

I had a very bad day yesterday.

My Grancha died on Sunday, and I'm ashamed to say that although I feel sad, I'm not distraught about it. Instead his death has reopened the week Belle died and it all feels so raw again. I'm reliving the visit to the chapel of rest, planning her funeral, her funeral. I felt suffocated with grief, my chest hurt. I felt like I was right back there at the beginning.

Today has been a better day, I've had a great boost at work and it really helped after the rawness of yesterday.

Hello all , tw here with a stupid.namechange .

I am sorry I dont pop in as much as I used to but I just am so tired . I still think if you all and hearing about the gorgeous Beatrice has prompted me to come and say hi and I am thinking of everyone .

I have just spent the evening with people who I think have no idea about harry , it is so weird to sit their as half a person and join in .

Bugger , sorry , crappy night .

Oh Fi....Grancha - love that. I know how much it hurts to lose a grandparent but its the natural way of things IYKWIM....I dont mean it hurts less its just the natural way. It does send you backwards though doesn't it? Aww your Grancha will be with Belle. Can you imagine them discussing everything? He will take your love to her. xxxxxx

hiya love. xxx

Hiya shabs and a big hug to you too x

I am I'm just very tired if being two people , the me that went out tonight is sociable and funny and good fun but a lying sod !

The other me gets tired and fed up and can sob at the drop of a hat ....alone obviously .

We should all have t-shirts made with that written right across them......if anyone makes them can they make me an XXL one in lime green? Thank you xxxx

I would love to spend a day being honest .

Them .. morning how are you ?
Me.. shit actually , did you know my son died ?
Them ... Fuck the right answer is " fine thanks how's you ? "
Me ... No not today , today is the truth , so ! Did you know that children die ? Well yes they do , and it is forever and if is shit and it hurts .

Do you think the world would implode ?

ROFL - would love to join in that conversation and cause trouble. You are so right TW - so very bloody right xxxx

I'm in for a tshirt! :)

'You'll carry her in your heart.'

No, no I won't. I won't carry her at all anymore because she'd dead.

'As long as people are thinking about her, she's not really gone.'

What are you, JK Rowling? That's a paraphrase from a Harry Potter book. A work of fiction. Guess what, dead people are gone.

'God . . . blah blah blah.'

I don't believe in 'God'. I don't believe there's any deity in the world worth worshipping who'd visit this pain on himself, his child or anyone he purported to love.

Yes Expat , the platitudes of pointlessness that we are supposed to be sodding thankful for because after all they are being so brave a are being so kind and nice to even speak to us , so any crumb that comes our way should be welcomed no matter how crass or hurtful .

Tossers !

shabs and you know, if he'd not died just then, if he'd died a few days later, for example, you would have probably forgotten that you were cross with him. I think the things that happen in those last few hours end up imprinted on our brains.

My tee-shirt?
"Time doesn't heal. I am broken and I'll never be fixed. Get over it!"

to you all for your support yesterday xx

I am shocked just how crap I felt. I knew I wouldn't be singing "It's a Wonderful Life" from the rafters, but I wasn't prepared for how much I was floored. Like running into a brick wall, as if it happened last week. I was forced to think about it, the moment the Dr said there was no heart-beat.

I'm glad it's over now. Yes, it's Tamsin's birthday on Tuesday, but somehow it doesn't fill with me with dread so much now. I think finding out she'd died, was far worse than giving birth to her - even though that went wrong. I was a bit excited seeing her, even when I knew I'd never get to take her home. I'd carried her, felt her move, feel her try to kick her insomniacal sister off my lap. I knew her, I wanted to hold her.

I went to Hobby Craft yesterday, and bought a plain glass votive, a plain glass star, some rainbow paints for glass. I am planning to decorate them for Tamsin. I must also get on with her stones for her grave. I've also bought a load of new things for her grave.

I hope it's OK to tell you all this now.

I also found my rainbow scarf yesterday. I've wanted one since she was born, but didn't want a 'Dr Who' primary coloured one. I found the most gorgeous velvet one, with shimmering rainbow colours. It is so perfect, so, so perfect :) xxxxx

morning all.

shabbs, you are an incredibly brave woman posting that iagree its the bravest post ive seen on here ever

tami, thinking of you, are you going light your candle on tue

just reading things on the sands website, youve probably seen it before

A woman who loses her husband is called a widow

        A man who loses his wife is called a widower 




        A child who loses its parents is called an orphan

      There is no word to describe a parent who loses a child, for there is no word  


       to describe the pain

me, ive just been in tears again this morning, seems normal to me now to be crying, or on the verge

my tee would say something like,
oh you expect me to wear are mask do you, pretend i'm ok all the time do you
expect me to suck up any crass comments that are well inteneded all the time do you
well fuck you
i'm a person not a robot
my son died
i will always always feel sad about that
everyday is a struggle for me
you just dont get it
lucky you

expat, anynews on the cat?

thinking of everyone on this thread.
hoping for strength for you all

I decorated the house today for Halloween.

This time last year, Aillidh was with us. She dressed as a princess.

A few days later, she took the bruise that became cellulitis, because she had leukaemia.

She had leukaemia last Halloween, we just didn't know it.

25 November will be 1 year since our nightmare began. And now it's over.

I'm so sad I can't even cry.

She's just . . . gone.

I like your tee-shit, chip. I want one!

shabba, you inspire me. You have no idea how much of a comfort you are. :)

white, we don't go back to the vet for another two weeks, but that cat seems normal. Our old Persian died of cancer years ago and he was way sicker than this cat.

Also I remembered, after we got home, of course, that I'd tripped over him at the bottom of the stairs about a month ago, when I was wearing my house Crocs, and kicked him quite hard on that side as I fell (well, not really kicked, I tripped over him so hard I went flying into a wall) and he limped on that leg for a few days.

He's his old fiesty self for sure, and eating and drinking fine.

expat, fingers cross for the cat.
how long have you had him for.

we have a cat, we had him for 11 years, and hes always been with us.
through all ups and downs

do you mind me asking how you discovered Aillidh was poorly?
i've followed alot of your threads, but i only knew your story as such from when aillidh was poorly, i think the first threads i saw where when she was poorly in hospital

hope you don't mind me asking and if you'd rather not say please don't
xx

I have to stop going through Gareth & Matts 'treasure box', this time it is not helping me. Seeing Gareths little tiny clothes and reading Matts hillarious school reports. Before I close the lid I wanted to share this poem that I found in there....yellowing with age now.

TOGETHER WE'LL WALK THE STEPPING STONES

Come take my hand, the road is long.
We must travel by stepping stones.
No, you're not alone. I'll go with you.
I know the road well, I've been there.
Dont fear the darkness, I'll be with you.
We must take one step at a time.
But remember we may have to stop awhile,
It is a long way to the other side.
And there are many obstacles.

We have many stones to cross, some are bigger than others.
Shock, denial and anger to start.
Then comes guilt, despair and loneliness.
It's a hard road to travel, but it must be done.
It's the only way to reach the other side.

Come, slip your hand in mine.
What? Oh yes, it's strong. I've held many hands like yours.
Yes, mine was once small and weak like yours
Once, you see, I had to take someones hand in order to take the first step.
Oops!! You've stumbled; go ahead and cry
Dont be ashamed...I understand.
Let's wait here awhile and get your breath,
When you're stronger, we'll go on, one step at a time.
There's no need to hurry.

Say, its nice to hear you laugh, Yes I agree,
The memories you shared are good.
Look, we're halfway there now; I can see the other side
It looks so warm and sunny
Oh, have you noticed, we're nearing the last stone and you're standing alone?
And look, your hand, you've let go of mine
We've reached the other side.

But wait, look back. Someone is standing there
They are alone and want to cross the stepping stones
I better go; they need my help.
What? Are you sure?
Why yes, go ahead...I'll wait - you know the way, you've been there
Yes, I agree, it's your turn my friend.
To help someone else cross the stepping stones.

BARB WILLIAMS. COMPASSIONATE FRIENDS NEWSLETTER.

That was in an envelope from my dear friend in America. She had (and lost) co-joined twin boys who lived a few hours. That was about 40 years ago but she still signs their names in Xmas cards. Thinking of Jason & Jared and their family.

That is beautiful, shabba.

white, Aillidh appeared to be fine. Around 10 November, she tripped at the play park down the road, and took a bruise to her right shin. This was nothing unusual, she was dyspraxic and prone to tripping.

But this bruise didn't go away. It got bigger and bigger.

The kids got a cold, the weekend before she was diagnosed, she took ill with it (her last day at school was 18 November). Again, she was always the one who took any cold or illness the hardest of all of us. Everything always knocked her for six. She was also a horrendous patient who refused to take medicines or eat or drink when ill.

I took her to the GP on Tuesday morning. The bruise started to get purple spots under it (that's petichae, it's from low platelets, but I didn't know it at the time). GP gave her oral antibiotics and told us to come back on Thursday morning.

Went back, no change to the bruise so he gave her another, stronger AB and told us to come back Friday morning.

We went back. No change in the leg, so he rang an ambulance to collect us at home and take us to Yorkhill. The second we left his office, he got hold of someone in haemotology and told them he'd sent Aillidh, explaining what he suspected (a serious blood disorder).

Got to A&E and the registrar came out to teh waiting room and said 'they' were discussing who best to treat her. Erm, okay. She had a canula inserted and a full blood culture.

Registrar came in and examined her - 'She has a lot of bruising and she's very pale'.

We were allotted a bed in a general ward, started getting her settled and playing with her when teh registrar from A&E came back, made a beeline straight for her bed, and asked me if there was someone who could be with me, as haemotology was very concerned about A's blood test results and a consultant had been sent up to speak to me.

At 8.30 on a Friday night. There was no one to be with me, we live out in the sticks and DH was with our other two in a howling gale.

So the registrar sat as well whilst A's consultant introduced herself and said, 'Aillidh is very anaemic.' I told her, 'You are not here for that. Why are you here then?'

And she said, 'Aillidh has leukaemia.'

The infection in her leg was very bad over the weekend. They began treating it immediately as they could not give her chemo until it was under control.

She was pyrexial when she went under GA on Monday for a bone marrow aspiration, but it had to be done for her consultant to adequately diagnose her cancer.

We saw her again on Monday around 7 when she told us Aillidh had AML and it was 60% of her bone marrow, that she'd have tests all day the next day and then a GA to have a central line inserted so her chemo could begin on Wednesday.

About a week later, she caught me in the corridor and took me to her room, where she told me the cytogenetics were back from that bone marrow sample, and she had 'two genetic markers' associated with poor prognosis from chemo and would need a bone marrow transplant to have any chance of survival.

She was right, of course.

oh expat, i feel so so much for you.i am so sorry you and Aillidh and your family went through all that.
its so terrifying how life can change so suddenly.

you write so clearly, with so much love
you lovely Aillidh is loved so much in life and in death that is so clear

so so unfair