"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

Makes perfect sense to me, MrsDeVere. Yy, the chemo she had was 7-10 days of 3 different drugs - all via Hickman line. She'd be sick during it and then really sick the weeks after, as the counts crashed and slowly rose again. She only got home 3 times in 7 months, and 2 of those were long weekends. And you tried to pack as much in as possible while avoiding infection and again, more drugs. Over a hundred days in strict isolation. Just her and me.

The last 11 days of her life, in ICU, I truly wished to die. So exhausted, so drained, as after her transplant she took infection after infection. I wanted to go to sleep and never wake up.

I lost over 2 stone in weeks. Still haven't put it back on, either.

I had no fear of death even then.

I would love to be able to give you two stone of my weight, expat. I have put lots of weight on since she died. Comfort eating that brings no comfort.

We went to the beach today. It was 25 degrees so we went to the beach only to get frozen!
The walk down from the top of the cliff would have been very difficult to negotiate, had we had the buggy we should have had.
The boys had a lovely time though and we found one of her signature white feathers amongst the dock leaves after ds4 managed to sting his legs with nettles on the walk back. Ds4 insisted on picnicking down on the beach instead of at the top of the dunes so now the picnic basket is full of sand.

That sounds lovely, chip! Glad you got a good day out. Wow, a white feather! Definitely Spirit sending a message, IME.

We went to visit her lair, taking along the balloons for the girls. It was soooo windy. The balloons, we really had to hang onto them and they shot, I mean, shot, up into the sky! Aila's was absolutely pegging it!

Then, the wind stopped.

It was raining as we drove through. That stopped as well.

For those of you who have permanent memorials, what is your experience of colour of lettering?

I had a wander around the cemetary, it's very large, and particularly, the pinky granite stones. White lettering we will definitely not go for! Am thinking gold or black.

Any experiences?

As the kids were playing near her lair, a family of a man, woman and little girl about A's age came in through a gate. The woman stopped and offered her condolenscences. Said she'd seen the wee cross at A's site and read it (It reads her name, dates of birth and death, Beloved Daughter and Sister to Roisin and Struan, Taken by Acute Myeloid Leukaemia) and pointed to where her 5-year-old daughter lay, just up the hill, died of bacterial meningitis last year.

So, so many children in that cemetary, and young people with 'Brother, Nephew, Son' no issue of their own.

hi, i lost my beautiful boy back i feb, he died shortly after he was born, due to massive heart problems.
he was beautiful had his dads feet and ears.
my face shape, and i could a resemblence of my dad
for some reason i don't feel comfortable saying his name on a public forum,even though i reaslise my details will probably make me quite outtable in rl.
so i will call my son baby orchid on here.

we have a beautiful lovely funny kind dd aged five, shes been through the mill and really felt the loss.
feel guilty that shes had to have experience with death at her tender age
i know shes knows i'm sad and that kinda kills me tbh

the world seems to have changed for me, good things just don't seem as good anymore.
the grass doesnt even seems as green anymore
like wearing sunglasses are something that just makes things seem different now

i think of my son every day
and i know i will until the day i die
and i will always always feel sad hes not here anymore

my pregnancy with my son started out as a twin pregnancy and i lost one of them around 8 and a half weeks, that twin did not leave the womb though, she, and i say she, only because i have a feeling she was a girl
mad i know
the drs said i would probably reabsorb the first twin we lost, and on future scans we had the twin had seem deemed to have dissapered
she ended up being engulfed into the placenta, and when my son had his post mortom, the patholagist found my sons twin.
so both my twins were actually buried together.
in my local churchyard, had a beautiful chirch service for my son

we should be getting my sons headstone anyday now, probably in the next two weeks

two weeks ago, i had a mc, thought i was 12 and a half weeks started bleeding, went to hospital and was told baby had died about a week ago, that teeny tiny baby from the mc actually came out complete, so we buried him or her in a large planter in out garden
still bleeding a tiny bit from that, so all in all its been a terrible 12 months

we keep trying to carry on, but its so so hard, we have actually just tonight been out for a meal and mariah careys song, give my all, came on.
and it was the best i could do to not burst into tears then and there
and all i can think about is my son, and how i would give my all to have just one more night with him.

just feel so so lost

i am so so sorry that all you others have lost a child too, sure fucking sucks

Hello, whiteandyellow, you and your son are always welcome here, no matter what, you don't need to name names if you don't want to. Sorry for your loss.

Thank you for sharing your story of him and of your family.

xx

FWIW, I am mother to beautiful Aillidh. She died, age 9, following stem cell transplant for treatment of acute myeloid leukaemia, of respiratory failure from two lung infections and 11 days in ICU, in hospital from 1 May 2012.

thankyou for the welcome.
i'm hopeless at keeping up with threads with lots of people pn at the best of times
let alone how i am at the moment unable to concentrate, i repeat myself alot, and i'm not anywhere near as articulate as most people on here.
just feel woefully inadequate, after all my son grew in my body, and he didnt grow properly
one thing ive always felt good at since having dd is being a good mum, one thing i though i could do really well.

the other day we were playign bettle, dd and myself, she was actually trying to let me win, as she knows im sad even though i try to protect her as much as i can.
that really breaks my heart
i worry how it all will effect her

thanks for listening to my story

i know your story expat, i prayed for your aillidh many many times times. i'm sorry they didn't work, i'm just in awe of you really, must have been terrible to see your beloved dd suffer like that for so long.
my heart truely and deeply goes out to you
i am so very very sorry for your loss.

the overriding i feeling i feel is simply lost.
completey lost

You are not alone, whitendyellow. We are here to support you.xx

I have no words for anyone today. I am consumed in the depths of my own grief and i am wallowing. I feel so so sad.

I can't believe that eight years ago, Ciaran had been born and was already dead. Gone forever. I want him here. I want him to be fighting with his twin over who plays the new x-box first. I want to see him laughing and joking with his siblings. I want him. The ache is so great and it hurts so much.

The time we had with him was far too short. I miss my baby.

Dee wish I could say the right words that would help....there are no right words. Just to say I am thinking about you today and sending my love xxx

Dee (()) No words, just love x

Welcome whiteandyellow. so very sorry for your loss. I understand why you don't want to put your children's names on here. You may not feel like it, but you are articulate. You have been through so much with your son and your miscarriage, I should imagine it feels like the world is against you at the moment. Your daughter sounds very intuative and compassionate, you are clearly an amazing mummy. Keep posting here, come and say whatever you want or feel. Probably more than one of us has felt that way at some point.

{{Dee}}

Such a hard day for you today. I'm sending love and strength your way and I will be lighting a candle for Ciaran.

((dee))
wish i could offer some words to comfort you.
but i know there are none

thanks for the wolcome and telling me i'm not alone.
its very isolating in rl.
even when i get invited to things i wonder if people are asking me as they feel obliged but they dont actuaclly really want me to come

suppose i just can't really believe this is my life
this has actually happened

aww dee .... I have lit a candle here for your darling ciaran

days like this take you right back to that fateful day dont you

we are all here for you

Love to you dee, remembering Ciaran. We saw lots of cloud kisses in the sky today, I'm sure some of them were being sent to you.

whiteandyellow keep writing here, remembering your beautuful baby orchid. That feeling of disbelief and unreality is so very common. How can our lives change like this?

Just sending love for you dee xx

I had a very odd experience last night. Yes, I think it could be easily explained away, but at the same time, I wonder... I woke up in the darkness because my touch-sensitive bedside light was on. Thinking I had fallen asleep with it on, I turned it off. However, this kept on happening throughout the night. Finally, I decided blearily that perhaps it was Mia wanting me to look at her photo on the bedside table, and so I left it on. This morning, I told DH about it, and he looked over and said practically "Well, the photo frame is touching the light base." Yes, that makes sense - until I realised that normally, there is normally a book which also touches the light base, which doesn't cause the light to turn on.

My emotional, non-logical side of me wants to think it is Mia helping me prepare for her birthday on Saturday, telling me that she is also sending us light and love...

Mias, that was Mia! She does that, do you remember her "talking" to her little friend through that photo and telling her about your new baby?

Today I returned to work after a two year gap during which time I supported my ill husband, then my lovely Flora who died 10 weeks ago today today after battling a brain tumour for a year. Thought it would feel like a massive step, but it felt ok really - I did not cry once though I talked about Flora a little, that usually does it! I am amongst friends there which is very important at the moment, so see how it goes, hours to suit me which is something. It meant that I did not think about Flora for every moment of the day too which is what I would do if I was at home. Glad to have made the step. Missing Flora so desperately otherwise. Love to you all on here. X.

3girlies, I'm glad you have support at work. My workmates have been wonderful as have most of my clients. I don't know that working fully takes my mind off her but it does keep my mind occupied, at least.
expat, we haven't organised Sylvie-Rose's headstone yet but it will be like fioled's for B. in terms of colours, raspberry pink engraving on white granite. I hope to visit a memorial artist some time this week.

I'm with chip here, MAM :). Mia was there.

3girlies, well done! 10 weeks already? Thinking of Flora, we're not far behind you.

Keep up the good work.

Dee how are you doing?

We got a letter today from the hospital where Sylvie-Rose was born, inviting us to a service for all the babies who were miscarried, stillborn or died shortly after birth. I don't want to go. I am going to go to the one in the hospital where they tried to save her which is a different hospital.
I am probably being unreasonable. But I think if they could have waited a couple more weeks before discharging her, maybe she'd still be here. And I wouldn't have a section in my wardrobe full of tiny pink dresses and outfits that she never grew into.
The second hospital, they did their best to save her. They re-started her heart. It was too late. But they tried.
I wonder if the first hospital tried hard enough. Or did they just look at a baby who had given them little trouble and just assume she would be OK?

DON'T go if you don't feel it in your heart, chip! We went to the one, for all those in the unit where Aillidh was treated who have died in the past 5 years. They don't go past that, although they invite speakers and readers, because, being an onco unit, they'd be there all day.

Go with your heart and don't feel bad about it.

We felt comfortable going because we knew our cons did anything and everything, she's amazing and brilliant, a professor who goes over and beyond the call of duty for her patients, as does her close colleague, I am privileged those two are in touch and shared details to remain so with me, and many of the nurses there, who came, always, on their breaks, up to PICU once she went, day after day. Two by two. And anytime I asked, they'd call up. They could not be turned away. The ward sisters and senior nurses as well. The kinder nurses in PICU would well rope them in, which they were more than happy to do, to change the syringe drivers, participate in care for her, and answer questions.

Even at her funeral, her very busy consultant and so many of the nurses who were off came, some of them having been there for over 30 years.

This first hospital didn't offer that to Sylvie-Rose, chip (I keep thinking, 'What a BEAUTIFUL name!). So don't feel you're being unreasonable and go with your heart and don't go.

There is no wrong in this, chip. You lost your Sylvie-Rose, and will be thinking about what might have been if that first hopsital had behaved differently.

You are well within your rights to just not go.

Be kind to yourself and your family. You don't need added stress. You don't want to go, so don't.

((()))