"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

Thank you for the new thread, Fioled. Remembering you Charlie, I miss you my Angel x

expatinscotland Mon 27-Aug-12 20:45:58

Same here, twinkle. People see us with a girl and a boy. The perfect family.

Will always miss her so much.

zeno Mon 27-Aug-12 21:14:59

Hi twinkle. Our dd died suddenly aged 4 and was thought to be sudc. Eventually after many months the cause was given as acute viral myocarditis.

The results took a very long time because of a shortage of expert pathologists for children to analyse the pm evidence.

I still ask for reassurance that there wasn't anything we could have done. I still feel terrible that we didn't save her. I still struggle to believe that a perfectly healthy child can die like that, even though we were there and I saw it happen.

There is an organisation in the us called sudc who are brilliantly supportive and can put you in touch with other families in the same boat. They fund-raise for research and awareness.

I haven't been on here for a while - sometimes I need to step away. Sorry to all for being a bit pants at being supportive and keeping company with you all.

Hi there all. Blubbed in a lovely gastropub today while having lunch with a friend. Oh well. She cried too. In fact, had a fairly emotional time, as DH and I have been arguing about stupid DIY projects. He thought it was me nesting big time, but was only when I was sobbing that this is the only thing I can control in my life at the moment, that he understood my unnatural focus on having it all sorted out - I am waiting for Mia's birthday, waiting for her inquest, waiting for this baby to arrive. As someone normally independent and who likes to be able to determine my own choices, it is very difficult in all kinds of ways. Trying to think of it merely as a 90-day ordeal.

zeno in the initial PM results, Mia was thought to have acute viral myocarditis as well, but that was formally revised by a child pathologist to a bacterial infection of her mitral valve. All words I never knew a year ago. We were "fortunate" in that we had the results quite quickly. Our cardiologist friend now has told us that perhaps it was caused by a possible non-sterile blood transfusion she had at birth, as I had a EMCS. Essentially, Mia had a little time bomb within her, just waiting to happen, and there is nothing we could have done to find out, except that last time we took her to hospital, and they failed us in the worst way.

I try not to dwell on what-ifs. Mia was just so, so unlucky. But my DH does blame himself. He keeps dwelling on an episode where he wasn't feeling well, and became worried he was having a heart attack, and feels that he was 'visited' by a presence and given a choice... he feels that the price of his promise to 'do anything' to stay alive was Mia's life. Now DH is not remotely religious, but now thinks there is a spiritual check and balance, and feels so bad. We have talked about it several times, but he is quite adamant.

MrsY Mon 27-Aug-12 23:56:07

I think it's totally understandable that we blame ourselves, because on a basic level, our job is to protect our children, and if they aren't here, we obviously didn't do that. But of course, life just isn't like that.

For us, one of the hard things is that we went into the birth centre when my contractions started and were sent away as I wasn't in established labour. At the time, they were debating sending me straight to the main hospital as my blood test results were iffy and I had a history of very quick labours (as it turned out, the blood test results were actually someone elses). Less then 24 hours later I was back at the BC and they couldn't find his heart beat. I will always wonder if things wold have been different - if I'd gone straight to Pembury and been monitored, he might not have died.

I'm in a bit of a state. We have very close friends, our best friends, due to visit on Wednesday. They live in Paris and we haven't seen them for ages. Won't catch up until at least this time next year. Their daughter was born two days before B, and I just don't think I can see her. But obviously I can't see them and not her. Really don't know what to do. I know a few of you have had this dilema (or something similar) in the past - was meeting a baby as bad as you thought, or better than the anticipation?

fioled Tue 28-Aug-12 00:10:00

mrsy I find babies 'ok' (girls not so much, but ok) as long as I don't have to touch them. In the earlier weeks I couldn't manage it at all, after a few months I could just about manage the same room, but to this day I will not hold a newborn (that wasn't mine, obviously I managed my rainbow!) Those first few times, and even now, I seem to find a steely exterior and be smiley and nice around the babies and then let the hurt come later when they have gone. Somehow you get through it, like we get through everything else.

Decide whether or not you are going to hold this baby before they arrive, so you know how to plan to say 'no thankyou' if that is your wish.

Funnily enough I cope much better with toddler girls now, those who would be the same age as Belle don't always have me in pieces like they used to, of course sometimes I feel really upset when I let myself imagine, but day to day I can walk past a 2 year old without wanting to run away. Same with older babies once they get past about 6 months, but newborns I still cannot cope with at all, even pictures sometimes. I think its because my baby girl was a tiny 4lb 5oz, so I just can't do it. I can't hold someone elses tiny girl when I ache so much to hold my own.

Our friends are having a girl in Dec, and I'm already anxious about what will be expected of me. I know I still won't want to hold her. I will be 2 1/2 years down the road, and I know I still cannot do it. I know I need to get over this fear of girls at some point, I can't go through life avoiding them, especially if we have nieces one day (or indeed another daughter, but that would be very different wouldn't it), but not yet, I know its not going to be this baby that I let this fear go with.

fioled Tue 28-Aug-12 00:11:20

and mrsy if they are your best friends, they will totally understand if you cannot hold or interact much with their baby.

having her around you is big enough hurdle for now.

zeno Tue 28-Aug-12 10:41:04

MrsY I found it excrutiating to see other children of the same age for a very long time. I think it's hard to guess at how you may feel and you will just need to be very gentle with yourselves and protective.

Personally, I have a strong urge to stare at my dd's peer group as long and hard as I can get away with, then often go and have a big cry. Your friends will of course be aware that it will be rough, and are likely to be feeling very anxious about not upsetting you. We often had to let people know that it was OK for it to be wierd and awkward and that it wasn't their fault.

mrsY your friends will understand about your apprehension, but I would say something openly to acknowledge it. It sounds like you will probably have to see them, especially if they are good friends with whom you don't want to lose contact. Can you perhaps visit them during the baby's nap time?

For us, we deliberately made the choice to keep contact with our friends whose children are the same age as Mia, and they have been wonderful - generous and supportive - perhaps even more than others, because they feel our pain, and can imagine the immediacy of our loss. Your friends might be the same. Yes, sometimes it hurts to see Mia's little friends growing up, but it also helps us to imagine what she might be doing at the same stages. However, these children are not Mia, and in a funny way, that helps. They can never be as amazing as our beautiful girl!! And I could never deny my friends the happiness they experience from their children.

chipmonkey Tue 28-Aug-12 11:53:41

I'm a bit dogdy around little girls still but did manage to hold dhs niece who was born around the time Sylvie-Rose died. Since then my cousin and a couple of FB friends have had little girls and I find it hard when the photos just pop up on my timeline.

I had an awful dream. I dreamt I was asking the lead singer of Ash to sing at ds4s funeral. Please let that never happen!

expatinscotland Tue 28-Aug-12 11:57:49

What I find hard is watching A's younger sister, now in the same class A was in, reading the same books. sad It will get hard when she surpasses the age A was before she fell ill.

A will forever be 9 years old and truly, 8, as she was dying by her birthday and didn't even manage a bite of cake.

Can I just add James to the list? He was 22 and we miss him so so much.
I love you James, always will. I hope the sun is shining on you and that you are happy. Keep an eye on Sam, he misses you all the time xxx

ILikeToMoveItMoveIt Tue 28-Aug-12 13:53:55

Of course you can add James to the list mum, the list doesn't belong to anyone.

Be honest with your friends MrsY and do what you feel comfortable with. If you want to push yourself the do, but if it's too much then stop - it's ok to change your mind.

After C died I didn't mind seeing his little friends, they helped to remind me that life goes on and that the world was still revolving. However I couldn't bare to see children of C's age who I didn't know - especially if they were crying and upset.

Ds3 has just turned 16mo and is now older than Cole will ever have been. I think that's why C has been on my mind so much recently. That and the fact that last week I saw some families that I met in hospital when I was there with C.

Both of their children survived, and I in no way begrudge them that. Infact seeing their dc thriving reinforces that everything we put C through (the treatment etc) was the right decision - with the information we were given at the time. Of course in the end it didn't work out and we were right to say enough.

But it doesn't stop the if only's though.

zeno Tue 28-Aug-12 14:45:34

Expat, our dd2 is coming up to the age dd1 was when she died. It is unbearable at times. We keep hoping things will get easier when she overtakes, but I'm not convinced! She is now wearing the same clothes and will soon outgrow them. Wierd and unsettling, and very hard to talk about in any meaningful way with those who haven't had the misfortune to go there.

MrsY Tue 28-Aug-12 18:07:56

I told J yesterday I didn't think I could go through with it, and we have settled on meeting somewhere other than there house, and with lots of things for the Mouse to do, so I can spend the time playing with her. And we'll take both cars, so I can bid a hasty retreat if it really gets too much.

Had a massive cry and we sat and talked about B for a while. Then I couldn't sleep at all last night, so today has been a bit of a challenge!

When they first said they were coming over, I told her I had no idea how we'd feel on the day, but chances are it would be one of the toughest things to deal with since we lost B, and I think she understands, as much as she can.

Helyantha Tue 28-Aug-12 18:18:13

Thank you for the new thread, Fioled.

Remembering and celebrating our darling third son. As your brothers grow, ready to fly, you are always with us, safe in our hearts.

MrsKwazii Tue 28-Aug-12 18:32:33

Just wanted to say hello and that I'm going to have a bit of an MN break for a few weeks. There have been some really horrid threads recently after the tragic accidents in Burnham and now Scotland, and while this thread is a safe haven as always, I'm finding the site as a whole a bit hard going. Love to you all and see you soon xx

chipmonkey Tue 28-Aug-12 19:20:58

MrsY, I totally get it. You need to take care of yourself first and foremost and any true friend will understand.

MrsK, I'll miss you but you know where I am!

expatinscotland Tue 28-Aug-12 21:32:37

MrsK, thinking of you ((())).

mrsK and mrsY glad you are putting yourselves first and doing what feels best for you. xx

expatinscotland Tue 28-Aug-12 22:02:35

Things I Can No Longer Abide:
That Cussons advert with the woman going from scan to child walking
Midwives or any show like it
24 Hours in A&E or any medical show at all
The B&Q advert with 'Our House' playing in the background
Catalogues featuring models with the build and colouring Aillidh had
Certain people on FB whose updates I can no longer read or pictures I can't bear to look at
The sight of Yorkhill Hospital on TV
Certain songs

expatinscotland Tue 28-Aug-12 22:05:59

Because we have a daughter who is 2.5 years younger than Aillidh, I have to suck up a lot.

Aillidh was only a class higher than her sister because of her dyspraxia.

So DD2 is in the same class now that Aillidh was in. She's reading the same book, and will soon pass where she was.

I got so upset I went into A's school bag and found her last book. 'Twigga and the Moon' and her jotter. Her last day at school was 18 November 2011.

She was diagnosed 25 November 2011.

She died 227 days later.

I have a similar list.
That same advert
Definitely no hospital / midwife / A&E reality shows
No music in the car, in case the words catch me unawares
Any sort of unnecessary violence to anyone on tv, in fact very little on tv
Driving past the hospital
Watching other mums at the gym taking their kids into the pool
The children's clothes section in Boots
News about the the medical mistakes or bureaucracy hiding the truth

Only last week, I too picked up Mia's nursery report book. It only had three entries. sad She was eating well, slept when she should, was interested in the sandpit and sensory room, and loved playing on the slide, going up backwards...

chipmonkey Tue 28-Aug-12 22:26:32

Does anyone else find that people casually ask if you watched One Born Every Minute as if they expect you'll be fine with it? I get that a lot.

And do you know how ridiculous I am? I worry that if the boys grow up and have a dp or a dw and she gets pregnant, that maybe she might go to the hospital where Sylvie-Rose was born and that I'll find it unbearable. Talk about overthinking things! For all I know they could all be gay or go to live in Australia or both!

expatinscotland Tue 28-Aug-12 22:30:06

Aillidh loved OBEM and wanted to have lots of kids.

I will never, ever watch that show again in my entire life.

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