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

(1000 Posts)
fioled Sat 25-Aug-12 11:45:08

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

SaintVera Sun 11-Nov-12 23:51:30

Hello lovely people. Can I come in?

My beautiful, complicated, funny, crazy, utterly lovely, severely disabled son died four months ago, aged 16. His inquest is tomorrow.

He was not expected to die. He was always healthy, but had a brief virus and we found him dead - blue and stiff and cold - in his bed in the morning.

His disability was all-encompassing. He took up 90% of my time and energies and the other kids had the remaining 10%. We have lost our beautiful boy and we have lost our role and meaning.

I live with terrible guilt too. I found him incredibly hard to look after. Life seemed a battle, dealiing with his challenging behaviour and with sleep deprivation. I found it hard to enjoy being a special needs mum at times, and the older he got, the less I coped. Yet he taught me everything about difference and acceptance and real humanity.

We miss him endlessly. Grief is so physical. My throat feels as if it is being held in a vice, my legs are jelly, my innards are liquid, my eyes constantly burn and my head throbs. Some days are ok. Some days my grief feels incompatible with life.

I have two other children I must try to stay strong for.

I have read some of your stories. cup I silently read about Bea on the SN board. So sorry you and I are no longer there where we belonged. Sorry for everyone else on here - I have cried over so many of your stories.

I need to go to my bed and try to sleep for tomorrow's inquest. Thank you for being brave enough to start this thread.

giraffesCantLightFireworks Sun 11-Nov-12 23:53:05

saintvera So sorry to hear about your lovely son, wishing you strength for tomorrow x

MrsDeVere Mon 12-Nov-12 07:27:53

Saint I am so , so sorry to hear about the sudden loss of your boy.

I only had to be a Carer for my Billie for two years as she had been well all her life up till then.
But the gap when she went! On top of the grief this feeling of 'who am I now' as my 'job' seemed to have disappeared overnight.

Wishing you strength for today and I hope you get somewhere near some answers x

expatinscotland Mon 12-Nov-12 08:57:39

Welcome, StVera.

I, too, cared for my severely-ill child non-stop for nearly 8 months before she died and it's still a void.

I'm very sorry for your loss.

It's been 4 months since our 9-year-old daughter died, too, and some days are sort of okay and others really bad. On the one hand, I'm very grateful to have had her, on the other, I ache for her.

Morning girls xx

Glad the 'new ladies' found us but so sorry you have had to xx

chipmonkey Mon 12-Nov-12 10:07:06

Hi Sparky and StVera. I am so sorry you find yourselves here.

Sparky, it is lovely that you have your other little boy but you will always, always know that there should be two. NICU is a tough enough place to be without losing one of your precious twins.

StVera, Sylvie-Rose, who we thought was healthy but tiny, took up all my time. I was expressing milk eight times a day, then feeding her because she wouldn't latch on, changing her etc. I literally never got a minute.I have four boys as well, but my Mum had mainly taken over looking after them as Sylvie-Rose had been in NICU/SCBU for so long.

When she died, my Mum stayed for a while and I really felt as if I had all the time in the world but I didn't want it. I wanted to be back there, doing the drudgework, just to have her. I coped by sleeping mainly, waking up was unbearable.

My5boysandme Mon 12-Nov-12 10:41:34

Sparky and Saint so very sorry for your losses.

Today is 7 weeks since my darling Dexter died. To the outside I look like I'm coping and that I'm probably a cold hearted bitch, but I can't let others see just how much my world has collapsed. I have to keep things going for the boys, I have to keep things normal for them, I feel I'm trapped in this nightmare and I'm just going through the motions.

My husbands best friend proposed to his gf after 9 years, I count her as a close friend. She came up to visit me and said it took 9 years for them to get engaged and in the same time we had been married for 6 years and had 4 boys, I quickly said 5 boys, she never said anything, I know she didn't mean it, but it was like a knife to my heart, after only 7 weeks have people already forgotten I've had 5 boys and always will. 

I wish I could just wake up and this having just been a nightmare, I can't get my head round the fact I will never get to hold my boy again.

chipmonkey Mon 12-Nov-12 21:25:57

oh myfive I hate it when people talk as though Sylvie-Rose never existed. I'm sorry your friend was so incredibly insensitive. And you will always be Dexter's Mum.

I went to choose her headstone today. It will be a teddy holding a heart in the centre and two larger stones on either side for dh and me when our time comes. The only thing causing difficulty is the colour of the headstone, rose white granite. I showed him B's fioled. Apparently pink writing on Rose white granite is Not Done normally in Ireland but it will be done now! It will be expensive but MIL and Mum will help.

Then later in the barbers ds4 almost choked on a sweet! He was red and gagging. I did the Heimlich manoeuvre but think that it probably was just stuck in his throat not in his airway. But I totally freaked out. Luckily there was a lovely Grandad in the barbers who helped out and calmed me down.

aargh these children will be the death of me!

MrsDeVere Mon 12-Nov-12 21:35:04

My5boys DEXTER DEXTER DEXTER DEXTER!!!! He is and will always be your darling boy and he DOES exist and he DOES matter and he IS loved.

MrsDeVere Mon 12-Nov-12 21:37:09

Chip
Sylvie-Rose's stone sounds beautiful.
I will be going in with Billie when I go. She is at home, she does not have a grave. So i will go in her urn with her and we will be together for ever.

My5boysandme Mon 12-Nov-12 21:37:28

The headstone sounds lovely Chip.

Dexters is black granite with a shooting star at the top, only another 6-8 weeks before it is here.

We've had that horrible stomach bug, and last night we went to check on the boys before bed and ds2 had vomited everywhere and was just laying in it and not moving. It really scared us, dh said am I always going to think our boy is dead, when we see them like this.

I'm struggling seeing babies everywhere I turn, I'm okish when they are awake, but I can't look at a sleeping baby without thinking they look dead, and I'm finding that very distressing sad

fioled Mon 12-Nov-12 21:39:13

Sylvie-Rose's headstone sounds like it willl be perfect. Glad B's headstone has helped! It was only going to be pink writing here too! Glad DS4 is ok too chip

A sad hello to new faces sad

expatinscotland Mon 12-Nov-12 21:42:48

I need to make a confession here. Even though I know some of you only online, I say your childrens' names if I know them. I light Aillidh's candle and I just say, 'Aillidh. Billie. Rosie. Dexter. (*white*'s son's name). Bea. Cole' and on and on. And other peoples' children I know who they've lost in real life. 'Rennie. Aila. Naomi. Skye (age 14, killed by her boyfriend in an accidental shooting 10 years ago. Her parents are good friends of my parents). Brent (drowned in 1979). Dave (43, just married for the first time and looking forward to having children of his own, killed by a drunk driver 2 years ago, his parents' only child, again, good friends of my folks).'

It's the only litany I have now.

MrsDeVere Mon 12-Nov-12 21:56:11

I understand expat
I really do

expatinscotland Mon 12-Nov-12 22:12:34

Because from everyone I know and have met, they miss saying their child's name.

MrsDeVere Mon 12-Nov-12 22:13:51

And hearing other people say their names.

sparky and saint I hope you find this thread some solace. There are always people here who will understand you. But I, like the others here before me, are so sad that you are here. Do tell us more about your boys when you feel ready to do so.

myfive you are doing your best, in the only way you know how. And that is enough. You might be crying on the inside for Dexter, but sometimes it isn't that easy to show your tears to the outside world. Sometimes, sympathy and a kind word can be more than you can bear.

chip DS4 does like to test you in all kinds of ways, doesn't he?!

expat that is not a confession, that is a beautiful statement of which to be proud. It is so lovely, saying the names of our children, especially because you know that many are not mentioned and you know how much it means to us all...

matildawormwood Mon 12-Nov-12 22:27:21

My mate came round for a cup of tea the other day and she just mentioned Daniel's name so casually, she called him "Danny", like you would if he had lived, and my heart just leapt with gratitude. I wanted to hug her. She's the first person to call him that, though of course that would have been his nickname and it's what I call him when I talk to him. And it made me realise that I haven't heard his name mentioned for soooo long....and yet it's only been six months since he died. I never ever wanted a tattoo in my life but I feel like getting it tattooed in bloody great big letters on my forearm for everyone to see (though I won't because I'm far too square!!).

Hello to saintvera, sparky and youwillobey, I'm so terribly sorry you find yourselves here. I won't say welcome because I'm sure there's nowhere else you'd less rather be, but you will find plenty of support and understanding here, if you need it. My baby boy was stillborn at 38 weeks, so I never got to meet him alive. It feels odd to say I miss him when I don't actually know who or what I am missing and never got to take care of him, but I do.

giraffesCantLightFireworks Mon 12-Nov-12 22:29:29

Expat I did something tonight - and I did it because of Aillidh smile You will remember a friend of mine helped us out when in PICU with A, she brought up meals, snacks etc and her and her husband (whose brother died a few years ago) helped with a few other things that you know what I mean but I won't write on here. Anyway today her bag was stolen while she was strapping her 2 small children in to the car, she put it on FB about 90min ago and I decided to repay her kindness in someway. And got dressed - was in my PJs! Went to sainsbos, got her a card, lipbalm, gum, pens, sweets and pocket tissues - wee essential handbag replacements. I thought - I am doing this because she was there for us, and also it is what Aillidh would think was a nice thing to do.

expatinscotland Mon 12-Nov-12 22:31:56

chip, that headstone sounds fab! Hope to see it one day.

Aillidh's will be up around February. Here it is. This is a gallery, but it's on Page 4, first one on the left in the second row, but this one will be 'red basalt'/pink.

Gold lettering. To read, 'Here Rests All That Was Mortal of/Aillidh . . . /19 June 2003 - 7 July 2012/Beloved Daughter of ExpatDH and Expat/Elder Sister To DD2 and DS/Taken by Acute Myeloid Leukaemia.' And the bottom part will read, 'RESURGAM'. There'll be a photo of her in the left corner, and a 20-inch matching kerb set (our cemetary only allows sets to 2 feet). Dh and I will have matching tablets and go in with her.

Asstone

expatinscotland Mon 12-Nov-12 22:37:48

Thank you, Giraffes! Yep, I know who you mean smile. To all who don't know, Giraffes was there for A, all the way. From the get go. She was our rock, she was A's mum in every way, she was there when A died, and the horrible 12 days in ICU. Giraffes gave up her holiday to support us and our dying child. Despite her own grief, she's a big enough person to have been there for our child.

And I say Mia's name, too, Miasmum.

Okay, I made a list on MS Word with every child's name. Sometimes I even say them all twice.

Just because they are not here with us, doesn't mean they don't exist.

expatinscotland Mon 12-Nov-12 22:38:23

Asstone! Exactly! F*&^ you, leukaemia!

thanks to expat and thanks to giraffes, you are amazingly generous people. So grateful that there are people like you in the world.

chipmonkey Mon 12-Nov-12 23:03:43

Giraffes is a shining light. I really mean that.

expat, I did PMSL at AssStone! I was thinking, expat is posting on the wrong thread and it's not even Friday!

But Aillidh's stone will be so beautiful. A perfect tribute to your beautiful green-eyed girl.

expatinscotland Mon 12-Nov-12 23:23:41

grin. Well, it's not for nothing we have MrsDeVeres 'Fuck Cancer' cross-stitch hanging over the sofa (really need to get a photo of that up on FB when my phone's charged).

Oh, and I'll have her know, 'leu-fucking-kaemia' is now in common parlance in Schehallion. And her consultant, now a friend, knows its origins (give credit where credit is due smile).

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