Misty breeze wraps about my shoulders, thinly clad. I shiver not, despite the coolness on my skin. Comfort, I now feel. Is it you my precious Angel?

[chipmonkey]

Starting a new thread for our angel babies
Sylvie-Rose 16/8/11 to 4/10/11 too short my love, too short.

I think I 'knew' you when I was on here before expat, but it's a long time ago. I think you mainly were in chat? My name has changed. It isn't fair that Aillidh has gone :( it's just not right. My counsellor accused me of having a 'god complex' because I do all the trauma and emergency medicine on top of my course to save lives, but I have lost one, he was young and it brought up all the guilt about DD again. It's just so wrong. I tell myself one day I will see DD again, and she's not really gone. (I sound mental now..) but I really believe she is still around, somehow.

It was important to her sister to have a photo. So we selected one taken shortly before she was diagnosed.

I've been here awhile :o.

I feel guilt over not doing some things that I know are irrational, she had a brilliant consultant, very well-respected all over the world in her field for good reason, she is beyond dedicated to her patients and will continue to work, as she is professor, long past the age when most retire, and I feel guilt over other things, like not recognising that she was dying.

And then I know, no matter what I feel, it doesn't change a thing.

If I were young enough to study to be a medic, I'd do it in a second. I think it's very well of you, tbh.

I have my face I show to the world now, and the real me, that I show in places like this or forums for bereaved parents or around people whom I know have lost children.

same! I'm always the funny buzzy upbeat one.. then I'm a miserable git when I'm here, sorry :D I've been told doing medicine is selfish with DS because of hours and leaving my decent job and basically throwing my life and career into a shredder and starting from nothing. But I just had to do it, I was working with cases of dead children all the time and it was immensely difficult to carry on in the field when I wanted to be a medic since before DD, and even more so after. Not that I will make the blindest bit of difference as a doctor (disillusioned, miserable git that I am :) )

matilda FWIW, I think your Mum is being unfair but she doesn't know she's being unfair. If someone's only experience of bereavement is the loss of a parent, for example, their idea of grieving is that it goes on for a certain amount of time, then you move on. That's simply not true with a child.

The other thing people don't realise is that your child who has died takes up the same amount of mental space as your living child, possibly more, because at least you can see where your living children are. I think that ds4 suffers because of the amount of time I spend thinking about Sylvie-Rose. But that if she had lived, then he would still have suffered from a lack of attention because I would have been looking after a very small baby.

cafe I think you will make a brilliant doctor! And your ds will be fine. They don't need expensive things and they don't need you there 24/7.

I think people in work think I'm fine. I'm cheerful, I get on with things. And then they say things and don't realise they hurt me.
One colleague talks about herself and her dd having "girl-time" just the two of them without her dh and ds.
You know, I don't think I would have had "girl-time" as such. I don't think I would have gone anywhere with just Sylvie-Rose and left the boys out. But it does hurt that I can't do it or not do it, that I don't have the choice.

hi everyone.
been reasonably okish today, dh has got the day off and been to a differnt town for a look round for an hour or so, then just resting at home, thinkwe will go for a walk down to the churchyard soon, and check on ds flowers at his grave.

matilda, i think its really important you get sometime, you really need it, you need that bit of headspace where do don't have to put on an act for so long.
i really struggle with putting on the act longer than half a day, half a day is kind of my limit at the moment, i think your mum is being really really unhelpful, i'm sure we all are not always there for our living children, as the child we have lost take up so much headspace, i totally agree with chip, that the child we lost takes up just as much if not more headspace, do you think it would help if you said somehtign to your mum like, look mum, i know your tryign to be helpful, but really, your actually making me feel worse.
i know its not that easy to say
i know so many times i let hurtful things people say to me go, as i don't have the strength to assert myself more
but these types of comments are so damaging, and they set us back and don't help
but please try and get sometime to yourself if you can

about antidepressants personally i would only ever consider them, if i felt i couldn't function, say i couldnt get out of bed, couldnt wash could eat, couldnt sleep[still not doing well on that one]

i know i don't work, but i do look after dd and dh and do all the shopping an dmake the house nice etc, do all the running of the house.
so i feel for me this is a good achievment
even thpugh i'm sure others see my as a lazy git
i know i'm doing my best and for me this is good

im so glad we have each other to just talk honestly to, and theres a place we can go to anytime where we dont have to wear the mask

cafe, i think you are doing your very best you will make a great dr with great understanding, i wish you every luck in your studies it must be incredably hard
i'm sure when your ds is olderhe will understand why you have dont the things you have, and he will be lucky to have you to look upto
your doing your best and thats really all you can do, so try not to feel guilty as its such a evil emotion
i know its easier said than done.

expat nice to see you aound, i'm not suprised you feel you have ptsd.
i hope you get a chance to recharge a bit when you go to the usa at xmas

chip lovely to see you on here supporting everyone
xxxxi think you =r colleague is incredably crass to say that about girl time in front of you.
some people are so inconsiderate
i often wonder do they do this on purpose? or ha they just forgotten already

i'm trying to decide if we should go to a friends xmas buffet or make an excuse, there is a groupl of people i made friends with when dd went to preschool,a nd we all still do things together now.
and shes having a party at her house in a couple of weeks, i think dd would enjoy it as lots of her friends would be there, dh says he doesn't mind.
but i really really really find these social events hard and i'm not sure if we agree to go , will we be dreading it, or will i be dreading it?, will my head and chest start pounding?will someone say something to upset me? will i feel worse after goign?

just don't knwo whever to go or not

Hi white!

Thing is, my colleague has generally been really supportive, she remembered when it it was Sylvie-Rose's birthday and is usually very nice. Besides which, she had an older sister who died as a baby, so she has seen for example that her mother will always remember her first baby....
I don't think she would be deliberately insensitive, I really think she thought she was just making normal conversation, and tbf, if Sylvie-Rose had lived, it probably would be just normal conversation.

hi chip, oh she sounds nice, remembering sylvie-rose's birthday, i s=would be so touched if anyone remembers ds' birthday.
oh she sounds nice enought then

im sure majority of insentive thigs are not said to hurt, its often to oddest things that sting, like when someone said to me other day, when we were talking about harry potter world
and said to me lucky i only have dd to pay for....

oh yeah so lucky my son is dead arent i
i felt like replying

its hard not to be hyper sensitive for me

Oh God, only having to pay for dd! And of course you would love having to pay for another child if that child was babyorchid!

It reminds me of another lovely Mumsnetter who was told in a shopping queue that she was "lucky" to have a blue badge on her car so she could use the disabled parking spaces. As if her dd having severe SN's was lucky!
Some people really do not engage their brains before opening their mouths!

Thanks all for your understanding. I didn't sleep a wink last night after my "mini meltdown" yesterday so feel like hell today, but thankfully a bit calmer. It really shook me, it was a horrible reminder that it wouldn't take an awful lot to just tip me over the edge.

I do get what my my mum's saying about not missing out on my DD and engaging with her. She's my world but I am not the carefree and fun mum she had and she knows it. I wonder if in time I can be like that again? I hope so. She deserves so much better than a mum who's faking it.

I got upset in front of her the other day. I very rarely do but she asked why and I told her I was sad that D wasn't with us. She said "But he's still here mummy". It was exactly what I needed to hear, bless her.

Cafecito I think you're incredibly honest and brave and it sounds like you've been through so much. Very little in this life is irreparable you know. He's still young and there's still so much time for that bond to grow and change as he grows older. And I think it's very inspiring that you've chosen to follow a path in medicine after your experiences.

matilda, I do find it's getting easier. Last year, I couldn't have given a toss about Christmas. This year it's easier. Last year, ds3 was in a Tae Kwon Do Class, I was surrounded by mums with babies and I didn't want to talk to anyone, this evening I chatted happily to one of the other mums. I'm looking forward to ds4's nativity play.
It takes such a long time and the changes are very slow but it does get better.

You are right Chip - time changes our horrible situations, it heals a little, it makes things 'softer around the edges.' BUT it does take time. xxxxx

Cafe what did your MN nickname used to be - I know your story but I cant remember your name!!

I think I may have finally lost my marbles x

Thank you chip for saying that it gets easier. I will never tire of hearing those words (only from people who've been there of course!!).

Yes it is really good to hear it does get easier.
Esp from people who know

I'd like to think one day I won't find the social aspects of life so difficult, and I won't be avoiding partiesand stuff for the rest of my life

matilda I do so agree. I do need to hear that people start to live again after this horror.

I didn't properly bond with my darling boy who died. He was disabled and I struggled with acceptance of his disabilities. I wish to God I had had the strength at the time to value him fully and enjoy him. Such regrets. He taught me everything in life.

"There is a crack in everything. That's how the light gets in" - Leonard Cohen

SaintVera, I remember a lovely lady on the tv once saying of her son, "You love the child but you hate the disability"
You did bond with him. All bonding is, is love. And we can tell how much you love him.

Chip you have a wonderful way with words, you are very talented.
It's the simple way you put things across that make me think, wow it actually really is that simple
I think your right all bonding is, is love
We tangle ourselves into knots over bonding but actually its just love

Oh, I'm very simple, white!

no your not, your brilliant

all bondiing is, is love. And we can tell how much you loved him Thank you chip. You are right xxx

hi everyone, don't suppose any of you live near ikea, in birmingham, tottenham or lakeside do you?

hows everyone today, i'm ok, starting ot get a bit stressed about xmas shopping can seem to concentrate for long enough to focus

still have that oxi uni thing to do, and i really want to get it done before christmas, might try and have a go tonight as dh is out

white, I am barely bothering with Christmas shopping. Pressies for the kids, and photos of Sean for grandparents etc., in lovely frames. I think a year off a big Christmas present shop is ok. No money either - a big chunk of our income came from Sean's Disability Living Allowance and Carer's Allowance. All gone overnight. We are struggling badly financially.

Not near IKEA - are you going? I'd join you for meatballs and a hug if it were possible x

here

well i went to the milkton keynes ikea today, and couldn't get the quilt i wanted for dd.
i'm trying to brighten her room up a bit, its still peppa pig wall stickers and shes five and a half now and gone off it, so im doing a woodland theme

luckily shes only got a few peppa pig wall stickers and they peel off easaily

i know quits etc are not really christmas presents as such but thought it would do for a present a few things to revamp her room

its stressful the money side of things isn't it.
i didnt even have a job, so of course i cant get maternity allowance, or anything, and we have had alot to pay for esp big things like ds headstone and what with dh losing time from work, we are very tight too
although must admit im inclinded to spend more lately, just in a desperate bid to feel better even for a short time
i can see how people become spendaholics

its awful how they just cut off your dla and ca, when you really need that money, i would have thought paying it for say another 6-12 months, would really help peope adjust as if we dont have enough to adjust to without the financial stress

i'd love to meet you for meatballs and a hug, it would be wonderful if we could all have a meet up sometime

white, wouldn't that be lovely to meet :) One day..

The instant and catastrophic loss of income is a rarely mentioned fall out from the death of a disabled child. The Joseph Rowntree Foundation did a study into it. We are just about ok as DH works for the blessed NHS which has a good sickness policy (for now). Others are forced into looking for work within days of the funeral, after years of being the carer of their child. People lose mobility cars overnight. David and Samantha Cameron would have been at least spared instant poverty when their darling little Ivan died.

I totally understand how much you want to spend money and jolly up your dd's room. It's a brilliant thing to do, to give her enjoyment.

yes it would be lovely

when i crack open that oxford uni study tonight, i shall try and get across, that some financial support would be really really helpful
so does it literally stop the day after a loved one dies?
doesnt it even continue for 8 weeks or anything

yes the financial struggle is another thing often not talked about

thanks, i just want to make it really nice for her, she seems so quiet today
i hate the fact shes been through this, and going through all this
i feel really guilty but i know its not my fault
but it hurts alot.
shes a sensitive soul

My DS is very quiet at home too white. We all blob a lot and watch too much tv, which makes me feel guilty, but at least it's easy.

Actually, I've just asked DH and he's put me straight. He tells me that Carer's Allowance gets paid for 7 or 8 weeks, Child Benefit for about 8 weeks, Tax Credits for 8 weeks (but the people who work there don't know that, so they try to take it away instantly. DH still arguing with them six months on..)

Disability Living Allowance - which was by far the biggest benefit for us, disappeared the day Sean died. So that still means people lose their cars and their main source of income overnight. The reason many carers of severely disabled children don't work outside the home is that the children require 24-hour care, constant supervision, and there is very little formal or informal childcare for them.