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?

(971 Posts)
chipmonkey Tue 13-Nov-12 20:36:33

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

Thank you Chip xx

Remembering my two boys - so many years since I last held you. You are both forever in our thoughts xxxx

Tamisara Tue 13-Nov-12 20:41:47

Thanks chip and also to Fioled for the last thread xx

Tamsin Rainbow, born sleeping at 37 weeks 30/10/11, loved forever, missed always xxxxx

chipmonkey Tue 13-Nov-12 20:45:22

Just reported the last thread to see if we can put one more post on it to link to this one.

giraffesCantLightFireworks Tue 13-Nov-12 21:40:40

Good idea chip. Lovely title. x

I had an absolutely overwhelming experience today. I still feel very shakey and emotional from it. Toying with myself whether I feel silly or not saying it on here.

My5boysandme Tue 13-Nov-12 22:14:29

So glad I found the new thread x

Remembering Beatrice Primrose, who lived for 1 year, 1 month, 1 week and 1 day.

16/09/11 - 24/10/12

Missing your smell and your weight in my arms. Missing your beautiful, loving eyes. Missing your serenity and comfort. Missing you more and more x

expatinscotland Tue 13-Nov-12 22:26:54

Aillidh 19/6/03-7/7/12.

Love you so, so much, little girl.

missymoomoomee Tue 13-Nov-12 22:30:50

Scott Dot 13-08-98 - 01-11-98

Emma-Lou bug 27-02-07 - 09-03-07

Missing both my angels every minute of every day. Never forgotton, always loved xx

fioled Tue 13-Nov-12 22:44:28

Anabelle Violet, my beautiful precious baby girl. Born asleep 21st June 2010.

Loved always, to the moon and back. xXx

chipmonkey Tue 13-Nov-12 22:45:53

giraffes do tell!

giraffesCantLightFireworks Tue 13-Nov-12 23:00:33

I truley believe Aillidh was with me at one point today. If I allow myself to think about it too much then I start to feel daft for saying this but that was how I felt and I felt so overwhelmed at the time.

I left work just after 6 and was driving in to the centre of Glasgow to go and study at uni. Was driving on express way and had such strong memories and feelings of when I would go up that way to hosp after work to see her and expat. I ached that I couldnt just take a left exit and go up to see them. It really hurt and tears were running down my face and I said outloud "I miss you Aillidh".

It was pouring with heavy rain, dark, horrible and I was so very sad. As I finished the words I miss you Aillidh, Call me maybe came on the radio right as I passed yorkhill.

I was sobbing in the car but smiling. And I said....thank you. Have been crying on and off since.

Had something taht felt similar 3yrs ago on dds birthday, I was really struggling and a white bird came and sat on my window ledge and stared in for ages.

giraffesCantLightFireworks Tue 13-Nov-12 23:03:11

pic of white bird on my profile actually, candles were my special rose scented ones

chipmonkey Tue 13-Nov-12 23:18:01

Giraffe's that is amazing. Somewhere, Aillidh whispered in some DJ's brain and made him play that!
And the white bird is amazing! It looks sort of angelic!

expatinscotland Tue 13-Nov-12 23:22:26

Been crying on and off all day, too.

giraffesCantLightFireworks Tue 13-Nov-12 23:28:31

Christmas adverts and songs etc are starting. This time of year until 3rd Jan are my worst times.

expatinscotland Tue 13-Nov-12 23:31:57

My poor little son, he's so excited about Christmas sad.

chipmonkey Tue 13-Nov-12 23:57:07

Oh yes, ds4 was so excited last year and the rest of us were dreading it! We did get through it though, it really wasn't as bad as I was expecting it to be.

Remembering my precious Sterre, born sleeping on 20th June 2011. Love, like starlight, never dies! She's doing a fabulous job keeping her rainbow sibling safe! Not long now before we can tell her all about her angel big sister!

My5boysandme Wed 14-Nov-12 09:36:48

Dexter 21/06/12-24/09/12

Missing you so much, my arms ache for you darling boy. Love you forever xx

For my beautiful Mia Alexandra, 400 days of complete, absolute and utter joy. But never enough. I love you so, my Sweet Pea.

SaintVera Wed 14-Nov-12 17:38:37

Beautiful, complex, funny, bonkers, utterly unique and severely disabled Sean Mack. Died aged 16 on 9th July 2012.

You taught me everything. I will carry you forever, precious wee man

whiteandyelloworchid Wed 14-Nov-12 17:53:05

remembering my beautiful son baby orchid, i love and miss you with all my heart, wish i coould hold you in my arms again and kiss your beautiful perfect face, and smell your lovely baby smell.
really really wish you were here with me now
keep watching over us and send us a feather when you get a chance, i love you so so much and so does your daddy and your big sister
we will be decoratig your tree soon for christmas, i wonder will you be watching us?
i hope so

i will love you forever and ever xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

expatinscotland Wed 14-Nov-12 20:08:30

Christmas ads. Have to turn some of them over. The one with the Gene Wilder song.

Also had to hide some folks I knew from the unit talking about 'wee fighters'.

My daughter fought hard for her life. She still died.

chipmonkey Wed 14-Nov-12 23:58:29

expat, there was one ad, can't even remember what store it was for where the big brother comes home from uni for Christmas and the little sister runs out it her jammies and gives him a big hug.
That should have been ds1 and Sylvie-Rose.

chipmonkey Wed 14-Nov-12 23:59:19

Not now, ds1 is only 16 but in a couple of years time. And how he adored his little sister!

expatinscotland Thu 15-Nov-12 00:10:23

I can't watch that one with the song, chip. It just reminds me, that Aillidh will be 9 forever. I can't watch that Coulson's or Colson's or whatever one with the lady first finding out she's pregnant and going through it all till her baby walks. I think it's the music, but even DD2 knows to switch that one off.

I will also, never in my life, watch 'One Born Every Minute' again. Aillidh loved it and wanted desperately to be a mother. But instead she got a burial.

whiteandyelloworchid Thu 15-Nov-12 00:21:50

Do you think children grow up in heven or.stay the same age

chipmonkey Thu 15-Nov-12 00:33:27

white, a lovely friend said once that she had heard that children do grow up but that a year in heaven is like 20 years here so that they don't grow up that much.
I have heard that everyone grows up in heaven till they are 21 and then they stay 21 forever.
So I take it to mean that Sylvie-Rose will be around 2 when I see her and my Dad and I will both be 21.

expatinscotland Thu 15-Nov-12 00:51:10

I guess what chip said. I'm quite unsure of it all now.

expatinscotland Thu 15-Nov-12 01:06:45

chip's words really stand out to me, thank you so much. I am speaking now with a woman whose daughter died of the same cancer as Aillidh 40 years ago. She is 71 now, and says it is great comfort that she will most likely not see out another 40 years without her child (she has health problems now). She has crossed, in a sense, to a side closer to death than life, where she is now closer to her child, and her husband who died of a brain tumour 10 years ago.

She was an atheist when her daughter died, and though she does not consider herself a classic Christian now, her experiences of near-death experiences, via her husband particularly, have convinced her that she will be reunited with her child after death.

I think about ages too. I do think Mia is growing up as her friends do, which is why I love to see what they are doing and learning. But at the same time, I worry that she and I won't recognise each other when I eventually see her, because we both will look so different. So paradoxically, I also believe that we all somehow change our physical form and become something like beautiful balls of light, powered by love, and it is that love which never changes and how we recognise the people we love... probably quite an unusual point of view!

I have no idea about growing up in Heaven... Beatrice was severely disabled, and lots of people have suggested she will be free from her disabilities in Heaven. But I never knew her as a 'normal' baby, so would she be the same Beatrice? Will she and I know each other when we meet again? It's too early in the day for these ponderings!

Talking of Christmas, I just asked dd2 what she would like, and she simply replied, 'Beatrice' How I wish I could give her her heart's desire.

Morning girls xx

Tom is not well at all. Took him to Emergency doctors last night. He has an middle ear infection and a throat infection which is causing a spectacular rash all over his body. The night before (around 3am) I was knelt on his bed with a glass pressing it on the spots!! There are measles going around his school as well.

About 1am I rang the NHS helpline......I talked to her at first and gave her all the details. She asked how could she help. My words blush 'Are you sure my son is not going to die' I now feel so stupid. Talking to a total stranger and asking ridiculous questions. I started crying and told her my entire life story blush I dont 'do crying' I pride myself (stupidly) on being the one who comforts others and is strong. <<sigh>> xxxxx

Ah shabs. <hugs> How is Tom this morning? And you? Hope you can see someone today and find out what is going on. But your question to the NHS Direct lady is totally understandable, I would also be thinking the same thing. You know the 'dark side' of fear and statistics, so of course you are scared. No shame in showing it.

The antibiotics have 'kicked in' and he has managed a piece of toast this morning....he is drinking gallons of water and is just having a hot chocolate - thank God.

Have rung school and they say the outbreak of measles seems to be confined to year 7.

His temp has dropped as well. The cough now sounds like an old dog and not like a car engine starting on a frosty morning!!

I cant believe that I said what I did last night but I was panic stricken....even my 'pin on smile' had gone.

lavandes Thu 15-Nov-12 09:01:48

Precious memories of our beloved Richard loved and missed so much, but he lives on forever in our hearts.

This must be so distressing for you Shabs of course you will panic. I am so glad Tom is a bit better today. xx

chipmonkey Thu 15-Nov-12 09:08:51

Oh, Shabs, I told the nice Grandad in the barber's all about Sylvie-Rose because I was afraid he would think I was unhinged otherwise! And now ds4 has a cough and I brought him again to the Swiftcare Clinic to make sure there was nothing left in his airways! The doctors in there will soon know us by our nicknames!
I have read a lot about near death experiences and I am sure that we will recognise our children and they will recognise us.

MrsCantSayAnything Thu 15-Nov-12 09:28:44

I just wanted to share something on this thread.....though I'm not someone who has lost a baby in the same way as you have.

A younger me was forced into a termination when I was in an abusive relationship and I always regretted it...that I didn't have the strength to get away from him and mourned the loss..

About ten years later, I got an amazing job...a real fairy tale of a job and I felt so proud. I thought about my relatives...my Great Grandmother who couldn't even write when she arrived from Ireland at the turn of the century and other female relatives who didnt have the chances I got to get an education....but who influenced me so much when I was growing up.

I wanted them to know about my job....that night I dreamed that I was at home and the door knocked...I answered it and there was a crowd of my relatives...ones who have passed away a long time ago...all women....the crowd went back and back so that I couldn't see all the faces.

I recognised some and others not....but they were all related to me, I knew that....I saw my Grans sister who had been born in the 1920s....they were all nodding and smiling at me and two of them at the front, had prams.

In the prams were two babies. I knew that they were mine.

These relatives had come from the other life, to congratulate me and they brought my babies to show me that they were looking after them.

It was the strongest feeling...I KNEW...I didn't just suspect that this was the case. I now know that babies are cared for in Heaven by relatives. It's a lovely thing to know and I just wanted to share. I hope I haven't offended anyone because my babies were taken from me in very, very different circumstances to the terrible losses people on here have had.a

Tamisara Thu 15-Nov-12 10:17:50

shabs I'm so glad that Tom is a bit better smile As the others have said, it is understandable (probably normal) to worry like you did. Hope Tom makes a full recovery soon xx

Mrs what a lovely dream, I'm glad it gave you some comfort x

Exactly one year ago I was standing in the little chapel at the cemetery, readin poems for Tamsin... in an hour she will have been buried for one year

chipmonkey Thu 15-Nov-12 10:23:57

Can't how lovely! I find that so comforting. One of my cousins had a dream that my Nana was looking after Sylvie-Rose and that my Nana was very young and beautiful.

Oh, Tami! <<<<HUGS>>>> I so admire the way you read out those poems for Tamsin. I couldn't do anything in the church at all. Dh did but I couldn't.

twinklesunshine Thu 15-Nov-12 10:51:18

Just to add my little sweetheart, who died in March aged 3, suddenly while asleep. We recently found to out that he had an overwhelming infection which caused his lungs to fill and cause cardiac arrest. It was very quick and there were no symptoms. I miss him.

I find other peoples views of heaven fascinating. My personal view is that he can see me, he is with my mum, and he is always going to be 3. When I die I will be 31 (the age I was when he died) and we will see each other as we were on that last lovely day together.

I am finding it really tough at the moment. Its always awful, but at the moment I just am constantly in tears and feel a really heavy sadness all the time that I just cant shift, even if I try and concentrate on something else, which normally helps.

Obviously I have always known that he has died and isnt coming back, but the more time that goes on the less that I am able to cope with it.


expatinscotland Thu 15-Nov-12 15:08:03

Tam, have lit Aillidh's candle for Tamsin.

shabs, you poor soul! How frightening. How is Tom now, hopefully well on the upswing now?

It was very scary. He still has the spectacular rash all over his face and torso. He is very sleepy and not hungry at all. Drinking gallons of water and the occasional hot chocolate. Tom is hardly ever ill - just colds now and then....and he has the appetite of a horse usually. I was so frightened. My head was shouting at me and telling me it wasn't serious but my heart was pounding and I felt like I couldn't breathe. I haven't felt so worried and so afraid for many years x

expatinscotland Thu 15-Nov-12 20:54:12

How is he now, shabba?

Sat at the side of me watching 'I'm a celebrity!!' Feeling sad he says.....feeling rubbish, tired and sad. xxx

expatinscotland Thu 15-Nov-12 21:21:23

Oh, poor lad! Is he sad because he is so ill? I'm glad he's perking up a wee bit, though.

He is reading over my shoulder and just nodded when he read the first bit of your message grin - going to take him and get him settled down for the night. xxxx

chipmonkey Thu 15-Nov-12 22:51:30

Oh, bless him! He just needs a bit of TLC, shabs and he'll be right as rain.

He will - Im sure of that Chips.

Im sorry Expat and any of you other ladies who have had a child with a serious terminal illness. I have gone on and on about Tom and he just has an infection. Have read my messages again and they now sound very selfish.


chipmonkey Thu 15-Nov-12 23:39:49

No they don't shabs. When you've lost a child already, if the others fall ill, you always think it could be a terminal illness. And it you've already lost two children, then you must think you've lucked out so badly that any kind of shite could happen to you.

expatinscotland Thu 15-Nov-12 23:44:31

What chip said. shabs you lost two children! When your surviving child takes ill, it's normal to panic - I think all of us do! Totally normal and that rash would have scared the hell out of any of us.

I feel like hell tonight. I miss her.

expat <hugs>

shabba are you seeing a bit of improvement in Tom and his spectacular rash today? How long is it expected to last?

Had a little blub at the gym this morning... heard a children's choir on the TV singing the Take That song for Children in Need with all the words about "the stars are shining bright tonight for you" that fioled used in the last thread. Maybe it's hormones, maybe not. I had headphones on, so no idea how much noise I made or I received funny looks... I miss my Mia so much.

MrMia and I went to our bereaved parents' group last night. So many people there, so many new faces sad. One very special lady there, whom I had invited along, who was just as eloquent, brave and lovely as I had expected her to be.

Coming out afterwards, I realised that while I definitely moderate my exposure to new people now, that actually, I have made a lot of new friends over this past year, all because of Mia. All of you here, and then in RL, other beautiful kind people as well. It doesn't take away the pain, but you all provide such a bolster of support with your compassion and acceptance. thanks

Some news to hopefully cheer you all up! Our little rainbow Lotta Beatrice arrived safely at home at 2.10 am today! smile our precious Sterre has done a good job as guardian angel!

Oh My Word grin Welcome to the big wide World Lotta Beatrice - what a lovely post xxxx

Did you plan a home birth?

Oh My Word - cant get 'over that.'

chipmonkey Fri 16-Nov-12 14:49:55

Oh, Blue, that's wonderful news! And a lovely, lovely name too!grin

My5boysandme Fri 16-Nov-12 16:04:18

Lovely news congratulations Blue. What a beautiful name too

I have a lady from the Scottish cot death trust coming to see me on Tuesday. I don't know how I feel about it, but I think it would be good to talk to someone about cot death. Weirdly I'm looking forward to just saying his name out loud with someone who wants me to talk about Dexter.

Hope your boy is feeling better Shabba. My ds2 had meningitis at 6 months so I understand the fear the rash brings.

Hope everyone's day is being kind to them xx

expatinscotland Fri 16-Nov-12 16:12:45

Congratulations, Blue!

shabs, how is Tom today?

Tom seems better than he was. Actually had some soup today!! Rash is 50% better - thank God.

Congratulations Blue, and can I say, what a smashing middle name you've chosen there wink

Mia Thank you for inviting me to the bereavement group. It was lovely to meet you and I think it will be good for dh and I . It was 'good' to see him cry and talk about Beatrice so openly. I hope we didn't talk too much for newbies!

We're off for a weekend away this evening for our wedding anniversary. Don't know how I feel about it. We had originally booked into the hospice this weekend for some special time with Beatrice. I could never have guessed the next time we went there she would have passed away.

I went to meet SallyBear this morning and we mooched around the Christmas department in John Lewis. I felt so sad looking at all the beautiful twinkly lights that a certain little lady would have adored. I'm going to go back and buy some to hang on the cross at her grave. It all seems so wrong.

I asked her to visit me in my dreams last night, and there she was. My gorgeous girl.

triplets Fri 16-Nov-12 21:45:29

Just felt like popping in on here...................so so many lost beautiful children, so sad, so unfair............brave Mothers with broken hearts. Love and strength with you always xx

chipmonkey Sat 17-Nov-12 00:48:38

cup, I think you'll find that the break away will not exactly be a barrel of laughs but a change of scene can be a very good thing nevertheless. Dh and I went away a few months after Sylvie-Rose died and it was lovely. Of course we would rather have been knee-deep in nappies complaining of not being able to go away, but it was good to have some time just to ourselves.

Morning girls xx

Sorry I missed you Trips xx

chipmonkey Sat 17-Nov-12 13:42:21

Feck it. Have to buy outfit for dh's niece at some point today. She and Sylvie-Rose would be the same age if things were the way they should be. I managed to buy her an outfit when she was newborn so not sure why I feel so crap about it now, a year on.

missymoomoomee Sat 17-Nov-12 13:56:31

chip 14 years on from losing my son and nearly 6 years on from losing my daughter I still feel crap about things like that from time to time.

I went to check out some secondry schools recently DS is starting after the summer and started crying in the middle of the canteen just thinking about the fact that Scott would have been at that school now.

With Emma-Lou it was a bit different I suppose, because she was so ill right from birth so I never imagined a future where she wouldn't have a lot of problems, but I find myself sometimes staring if I see a little dark haired girl about her age in a wheelchair (I know I shouldn't be staring) and thinking about what should have been.

Even now its still a case of taking it a day at a time. sad Is there no one else that can nip out an buy the outfit for you?

lavandes Sat 17-Nov-12 14:29:07

Congratulations Blue wonderful news xx

chipmonkey Sat 17-Nov-12 17:37:22

One of my colleagues might go for me, I suppose but I don't know if I want to ask them. I could ask MIL but SIL is rarely very impressed at anything MIL buys and I can't say I blame her!

Firsttobed Sun 18-Nov-12 09:50:19

twinkle I just wanted you to know that you've been heard. I didn't want your heartfelt post to go unanswered and unacknowledged. You and the many other ladies on here are very brave just to be able to get through this awful time and keep going. We need to know that our cries for help have been seen.

I'm sorry that you're going through such a difficult time now. I am thinking of you if that helps. Keep going xx

whiteandyelloworchid Sun 18-Nov-12 19:32:25

congratulations blue xx enjoy every cuddle

personally been on a day out with 6 friends to a spa, just felt like a freak, the only person in my world whos baby has died.
they are all talking about there families, and there plans and their jobs etc
making plans
and i just feel myself becoming more and more withdrawn

came home sobbed to dh

i jut dont want to feel this sad all the time anymore

chipmonkey Sun 18-Nov-12 21:47:03

white I know.
It just seems like we're living in a post apocalytic world but our friends are all still in their normal world. So they're talking about the price of cake and we're going "Cake? We don't even have bread!"
I bought the outfit for Dh's niece. It's very cute but I deliberately looked for something I wouldn't have put on Sylvie-Rose. There was one outfit that was almost identical to the one we buried her in. I welled up when I saw it.
I am preparing for Christmas but although I'm not dreading it like I did last year, I'm not exactly looking forward to it either.

whiteandyelloworchid Sun 18-Nov-12 23:06:05

Thanks for the understanding chip, I just don't know if I should keep trying to do things or if I should just not. But guess I worry if I withdraw completely it will harm me more in the long run ?

Its just this never ending sadness, just really hoping it will get easier in time

Good idea about the outfit, good to get something you wouldn't have choosen x

chip well done on doing the outfit for your niece. I would have happily chosen something online for her if you thought you could trust my taste!!

white I think you just draw new parameters around your life. Some things you can do, some you realise are currently beyond you. It's not worth feeling bad or guilty - it just is. And then, maybe a little later on, you find that perhaps the harder things aren't quite so challenging any more - yet other challenges remain just as entrenched. All you can do is go with the flow, and do those little 'does this feel right?' checks every now and again.

I am looking forward to Christmas, or, perhaps more accurately - I would like to be feeling that way... whole family here, new baby, lots of excitement. But at the same time, I am not sure that I can allow myself the 'indulgence' of all these lovely things happening to me. sad

But I did find a beautiful little leaf stamp and an orange ink pad so I can add Mia into our Christmas cards. It was perfect. Love you, sweet girl.

chipmonkey Mon 19-Nov-12 00:09:41

Mias, I would totally trust your taste but I kind of feel bad about the little one. She has done nothing wrong, neither has SIL but through no fault of their own, dh and I find it very hard to socialise with them.
So I did want to choose the outfit. It is nice, designer-y. But not an outfit I would have chosen for our girl.

BTW, where did you get the leaf stamp and ink from? I want to get a pink rose stamp for Sylvie-Rose. I'm sure fioled linked to a place last year but I can't remember where.

expatinscotland Mon 19-Nov-12 00:49:05

I love you so much, Aillidh. chip is right, the dead don't come back.

You are so much missed.xx

Morning girls xx

Christmas is just another day.....just another day. I will be posting on here on Christmas morning just as I always have done over the years!

expatinscotland Mon 19-Nov-12 09:43:03

Just another day. I'll do my shopping in one shop once we get to my parents' home and that's that.

Don't know if to put up the tree as we won't be here and not returning till after Twelfth Night.

whiteandyelloworchid Mon 19-Nov-12 10:27:14

mias mummy, do you mean, if you don't fancy something just don't do it?

thats sort of what dh said to me last night, that i need to be more selective about what i do and who i spend time with
and only do thing i really want to do

shabbs, ive never looked at it that way before, just another day, i thnk i'll try telling myself that on, when i feel myself getting all upset about christmas

thats a great idea about the stamp, perhaps i could get a feather one or start or something ? yeah i'd like to know too where you got that from

i was awake at 5a unable to get back to sleep, i nearly went to the gym for a swim, as they open at 6am but i must have fallen back asleep

chipmonkey Mon 19-Nov-12 10:48:37

white only do what you feel able for and try to socialise with people who know how you're feeling or at least have enough imagination and empathy to support you.
My SIL ( BIL's wife) was brilliant after we lost Sylvie-Rose. She would arrive on a Saturday with Pizza and wine and listen to me whinge endlessly. She also didn't imply that I was a bit of a loon when it came to talking about white feathers and moving toys even though she may have thought it!

My other SIL on the other hand, can't open her mouth without putting her foot in it and worse, she doesn't even see that she's said or done anything wrong.

So I spend a lot more time with the former!

Expat, last year we did the tree, we did the dinner, Santa came, but to be honest, if it wasn't for the boys, we might not have bothered.
I am sort of looking forward to Christmas this year but not in the way I used to.

whiteandyelloworchid Mon 19-Nov-12 10:58:20

thanks chip, i do feel more comfortable in small numbers so with one friend at a time, or maybe two or three at the most, when its a group thing i find it harder
i think i also just found it a long day as it was a whole day, half a day may have been easier for me.
some people i just dont talk to about ds
as they don't understand and dont help
others i do talk to

i have 2 sil, one never talks about ds or mentions him
the other one is massive gossip and it just feels like shes trying to get a load of information to gossip about me with her friends, cant explain it very well, but neither of them are helpful

both my brothers one tries to pretend nothing has happened
the other one i can talk to but i only really see him when dd is there and his dc are there so i can't really be totally open and say whatever i want iyswim

i have got closer to my mum and dad
but i cant talk to my inlaws much either

and theres some friends i can talk to and some i cant

white I agree with your dh. Only do what you want to do for now. Doing stuff you need to do comes later - but that need should stem from you or your family, not because it is the right or polite thing or it would make others happy...

I bought the little leaf woodblock stamp at Hobbycraft. They seemed to have quite a range of different ones. Here's some which made me think of people here

a butterfly

a rose

a fairy

a daisy

There are lots of flowers, fairies and little statements, although I couldn't see a special orchid one for you white nor a rainbow for tami

chip if you have any problems about getting one, I would be only too happy to buy one and send it across to you. x

expatinscotland Mon 19-Nov-12 13:05:01

Exactly, white, what chip and Mia said.

chip, since we're off to my family the 17th, I don't think we'll bother with a tree. My folks will have one, my sister will have one, we'd just come and see it and it would all come back to us. It's not like they won't have a fab time, they'll be taken to see Santa, my daughter to the ballet, my sister baking loads with them, crafts, etc. My sister is having a huge Xmas dinner.

chipmonkey Mon 19-Nov-12 13:25:27

I see what you mean, and it would be miserable coming back and seeing it there. And then having to put everything away again....!

The headstone people haven't contacted me yet about the granite colour. This is going to drag out, I think.

whiteandyelloworchid Tue 20-Nov-12 09:27:13

thanks so much guys, i think i ned to knock off the socailing for a while and be choosey about what i do or do not want to do
and if i get pushy people saying come on white i think you should come with us to xyz i will have to say thanks but i don't feel upto that at the moment, but maybe i will next time
try and be polite yet firm

thats what i'm going to try anyway

just don't know what to do about this never ending sadness, i guess i just have to try to learn to live with it, while hoping it eases with time.
try not to think about the future too much and take it a day at a time
i cant really think of any other coping mechanisiums

its so nice to have you to chat to, as hardly anyone, apart from the rare few, in rl understand even 1% of all this
i feel like as ds was a baby when he died other people consider it less important
but of course it is not to me and dh
and dd

anyway i realise im just rambling on again gonna go to the gym for a swim and to try and read my book, see if that helps clear my mind a bit

fioled Tue 20-Nov-12 09:44:09

I believe this is where we got our stamp from. I uploaded Belle's angel that is on her headstone and they created it for me. Cost around £30 if I remember.

Reminds me I also need to email them, because the rubber is curling up off the block.

fioled Tue 20-Nov-12 09:44:19
whiteandyelloworchid Tue 20-Nov-12 09:46:08

oh thats a clever idea, fioled, could even get a footprint one or something
or perhaps other people might find that a bit too real in their cards etc,perhaps a feather or star would be good

chipmonkey Tue 20-Nov-12 22:21:57

Twas the Night Before Christmas"
~ For Bereaved Parents ~

'Twas the month before Christmas and I dreaded the days, That I knew I was facing - the holiday craze. The stores were all filled with holiday lights, In hopes of drawing customers by day and by night. As others were making their holiday plans, My heart was breaking - I couldn't understand. I had lost my dear child a few years before,
And I knew what my holiday had in store.

When out of nowhere, there arose such a sound, I sprang to my feet and was looking around, Away to the window I flew like a flash, Tore open the shutters and threw up the sash The sight that I saw took my breath away, And my tears turned to smiles in the light of the day. When what to my wondering eyes should appear, But a cluster of butterflies fluttering near. With beauty and grace they performed a dance, I knew in a moment this wasn't by chance. The hope that they gave me was a sign from above, That my child was still near me and that I was loved. The message they brought was my holiday gift, And I cried when I saw them in spite of myself. As I knelt closer to get a better view, One allowed me to pet it - as if it knew - That I needed the touch of its fragile wings, To help me get through the holiday scene. In the days that followed I carried the thought, Of the message the butterflies left in my heart - That no matter what happens or what days lie ahead, Our children are with us - they're not really dead. Yes, the message of the butterflies still rings in my ears, A message of hope - a message so dear. And I imagined they sang as they flew out of sight, "To all bereaved parents - We love you tonight!"

-By Faye McCord - TCF, Jackson, MS

chipmonkey Tue 20-Nov-12 22:31:07

And Happy birthday, Oliver xx

Ah chip you always have the most magical words. Read that piece last night, and had a little weep. And yep, read it again tonight, same thing...

chipmonkey Fri 23-Nov-12 00:11:04

<<<Passes Mias a hanky>>>>

whiteandyelloworchid Fri 23-Nov-12 00:25:30

Hey guys, had a better couple of days after Sunday, not hard to improve on that I guess

Ive ordered my Christmas decoration for ds.
It's a silver star that says ds name, his dateof birth, then simply always loved, always remembered

I wanted a star.

I sort of wanted it to say in our hearts at Christmas time and always but it wouldn't fit, but I'm sure ds knows that

I was very touched as my newphew has made a lego car with ds name on it for his grave and my nieces have asked if they can take a mini Christmas tree in a pot ans decorate it with my dd. To my sons grave.

Really touched by that. They asked first aswell which is really nice and thoughtful too

whiteandyelloworchid Fri 23-Nov-12 14:21:21

oh bloody heck, i was actually feeling ok this am, i was and am very touched my nieces and newphew

tonight we have two very good friends coming over, to get a chinese have a drink and play a board game we have got for christmas

so i was was feelign fairly good, fairly ok

i am actually sort of looking forward tonight

then today in the gym a friend comes over to me, she is a good friend but now she works almost fulltime i dont see her as much

anyway she started sayign all sorts to me, asked me how i am, i said well some days i have ok days and some days not ok days and said i found it difficult on the spa day i went on,as everyoone was sittign around chatting about all there plans and stuff and that i can feel myself feeling quiter and more withdrawn,and i find it isolating, but that some times i feel ok ish

so she told me im depressed, i said well i dont think i have clinical depression, i just think im greiving
[am now im wondering am i actually depressed?]

she said it depends on how i deal with it as to whever i will get over it or not, i said well its not really th sort of thing you ever get over, and she mumbled somehting about how you deal with it is how you cope with it

then she started saying she has a therory that i have a genetic problem, and that i cannot carry boys, and thats why my sons heart didnt form properly, plus i lost his twin in the firts trimemster and then the mc i had in aug
she said she thinks it s because they were all boys

i said well the hospital told me from the post mortom, the ds had no chromasone abnormailities, and i said surely if i have some sort of genetic problem, and my ds problmes where due to genetics wouldnt it have shown up on the post mortom and she replied i don't know

she said i should have another baby, and appreicate what i do have, it is so difficult when people tell you to do that, i replied thats what i say to myself everyday, but i still feel sad and losing ds

so know i'm wondering if i am actually depressed
and if my son died due to some sort of genetic problem

white OMG, ignore, ignore, ignore that 'friend'!! So angry at her for you. Totally aghast at the 'wisdom' shockshe has decided to impart. How dare she say such things to you, particularly coming from a total lack of knowledge!!

Depression is different from grieving - but no, I am not an expert either! However, I think you were very honest about how you were feeling, and it sounded totally reasonable to me.

Please don't let her stupid ideas pull you down. You are doing the best you can, and that is already a lot - and it is all you can do for the moment. <<<hugs>>>

expatinscotland Fri 23-Nov-12 14:58:48

Oh, white, that is horrid!

This is no friend. What an awful thing to say!

My mum does similar. Told me all about how the Bushes lost a child to leukaemia 60 years ago when the girl was only 4, but how she heard her son tell a friend he couldn't play that day because his mum was sad and that's when she decided to 'turn it around'. I told her to spare me the lectures and anecdotes, it's been only four f*cking months since our daughter died and I'm doing the best I can to spare her two siblings grief, and that if she can't refrain from doing that, then it's best we stay at my sister's because she doesn't see the need to f*cking preach to me.

I've learned to tell people who do stuff like this, 'Look, I know you're trying to help, but you aren't and you're being hurtful, so please stop right now.'

expatinscotland Fri 23-Nov-12 15:00:25

And the whole 'get over it'. The great author Victor Hugo's eldest daughter drowned shortly after she was married, age 19. Though he was only 40 when she died and he lived till he was 83, he was very vocal about never 'getting over' his death. How little attitudes have changed in the past 160 years!


whiteandyelloworchid Fri 23-Nov-12 16:08:24

so do you think i am depressed or just grieving.?

i seem able to function, such as make sure the hosue is tidy and theres food in and dds needs are met
i'm a sahm though so i don't have to go to work, although i do have to do the school run and mix with people there etc.
i 100% know that being able to do what i like when i like is the right thing for me at the moment,if i find a spa day a bit too much, i think i would certainly find a whole day at work toommuch, so sah is the right thing for me i think, even thpugh others have told me i need to get a job, as if thets going ot sort all my grief out

thanks for your advice, its upset me because i was actually feeling pretty ok today and shes really really pulled me right down

its so nice to have you to talk to as the first thing i thought, i must tell you guys on here and a few friends from sands that i know will understand

i think she genuinely thinks she was trying to help me, yet it just makes me feel more and more and more isolated

the isolation is one of the things i find the hardest.
and its a bit likethe whole you can feel more lonely in a crowed room than anywhere else
i feel more isolated when i'm around others, well some others

expat i get what you say the word you used preach lept off this page for me, as thats exactly what i feel it is people telling me that i nned to let ds go, to move on, get over it, etc
and then telling me to concentrate on what i do have, ffs dont these people realise we do this every single day

mias mummy, it was upsetting me the way she was acting as if she had fgured it all out as if its some sort of puzzle, when its my life, i was told by great ormond street the chance of this happening again is miniscule, yet if her theroy is right and i can't have boys, tehn that means its 50% likely not to work out of we ttc again

euurggh ive had all her comments whirling around and round my head all bloody day now.

oh she also said ive got a black hole in my heart now, and i should have another baby

shall i just never talk to her about my ds again.

what shall i do next time i see her and she asks me how i am
perhaps i should say the one thing i dont feel helps is being told what i should and shouldt do

perhaps i shold borrow that look i know your trying to help phrase,but your not

but i just dont seem to be able to stick up for myself anymore, i get trampled on, getting quieter and quieter everyday

sorry to go on about myself so much.
shes just made me all mixed up now
and now im thinking what if i can't have boys and if i get pg again and its a boy will he die

expatinscotland Fri 23-Nov-12 16:25:06

You are grieving, white, because you have suffered the worst thing that can ever, ever befall a person, the loss of their little child.

If she starts up again, and you aren't ready to say, 'I know you're trying to help, but you're not,' then can you stretch to, 'I'd prefer not to discuss this'?

In fact, I'd avoid her from now on. Her genetics theory and telling you this to your face when a) she's not a doctor b) she's not your doctor is way, way way beyond the pale and untrue or your doctor would have told you so!

That's just stepping beyond the preaching.

And yy, I think most people, even in our own families, want to see you 'move on' so they don't have to deal with seeing you in pain or unhappy. Well, fuck 'em. Seriously.

You don't ever 'get over' this. People say this to people who are widowed, too, even after decades together. 'Oh, you'll get over it' 'Have you started dating again', 'It's time to get back out there'.

It's their problem that they're afraid of grief and death because this is our life now.

They don't want to deal with it, want me to make believe my child didn't exist or it was a long time ago so that makes it okay, then we can't be friends anymore or have a family connection.

Because you do 'move forward' every day you wake up, get your child dressed, go to teh gym, etc etc.

chipmonkey Fri 23-Nov-12 16:26:11

Oh, white, a dhac! Just what you need!

Most people don't "get it". How could they? But most people know they don't "get it". The worst dhac's are the ones who don't get it but think they do. And impart those little nuggets of "wisdom" that have you reaching for the wine!

The thing about "not being able to carry a boy" or "not being able to carry a girl" is bolleaux! I remember one lady on another forum saying that this was true because she had friends who'd had miscarriages and that they all had all boys or all girls. At the time I had four boys and had never miscarried, my SIL had two of each and had miscarried once.

I think most of us who have lost a child would like to have another but we all know full well that one baby can't possibly replace another.

And being grateful for what you have is a nice little aphorism for people who've never lost anyone or anything. As is "dealing with it" and "getting over it". You won't get over it. You will deal with it because you have to but how and when you deal with it can only be determined by you.

white, there are some people I avoid because discussing Sylvie-Rose with them isn't an option and I don't want to not discuss her.

chipmonkey Fri 23-Nov-12 16:31:49

Oh and we're probably all depressed because we're grieving.
I think that if I felt like this for no reason, my GP would probably prescribe AD's. And even now, I'd say my GP would prescribe ADs if I asked.
I have this idea though, that my feelings are normal for the situation and I have an idea, possibly mistaken that I will heal better ( as much as I can heal) without drugs. A bit like your Mum saying that your cut would heal better without a Band-aid because "you're letting the air at it".
But that is a totally non-medical, non-scientific opinion!

expatinscotland Fri 23-Nov-12 16:36:14

I think the reason people are so quick to label bereaved parents as depressed and in need of ADs is because they don't want to see or deal with it, and because the reality is there is no timeline or timescale on grief. People don't like that nowadays. They like to see things tidy and neat. The death of young children doesn't fit into a box.

expatinscotland Fri 23-Nov-12 16:38:04

'And being grateful for what you have is a nice little aphorism for people who've never lost anyone or anything.'

YY. Now you be grateful, because it's obvious you're a magnet for tragedy. Such a belittling thing to say.

I don't want another baby, can't have one anyway, but that's due to my age more than anything.

missymoomoomee Fri 23-Nov-12 16:39:09

white I am furious on your behalf.

What an absolute dick that woman is.

If she has one ounce of compassion she will be sitting thinking about all the stupid things she said to you right now and kicking herself.

If she does say anything to you again just say 'I don't wish to discuss it after last time thank you'

I can tell you that my daughter died from an undiagnosed genetic disorder. Although they didn't know, and still don't know, what exactly it was, and they didn't find anything wrong with her chromosones (they said it was possibly in the 3% of dna they know nothing about yet) it still has was marked down on her death certificate as a genetic disorder (I can't remember the exact wording) so they would absolutely be able to tell if it was a genetic thing.

I am also not sure how far down the line you are, but I am 14 years and 6 years into this now and you don't sound clinically depressed to me. You sound like a 'normal' (for want of a better word) grieving mother. I go through phases now where its mostly good days, although I still think of my babies all the time, but then something will set off a memory or an angelversary or birthday will be coming up and I will have a really shitty few days or week.

Please be gentle on yourself and don't take to heart anything people like that woman say. This is your reality, its not a 'problem' to be solved by some idiot. (((HUGS)))

expatinscotland Fri 23-Nov-12 16:43:33

I'm actually dreading have to be around my mother and her sighing and tutting.

She was like this before Aillidh died and has got even worse now.

I can't wait to decamp to my sisters and eat pizza and drink beer and watch crap telly without her tutting about how we're eating and drinking too much (that's why you're fat blah blah blah).

expatinscotland Fri 23-Nov-12 16:46:31

'oh she also said ive got a black hole in my heart now, and i should have another baby'

That's a horrid thing to say, too. We have friends whose 19-month-old son died of cancer. It took three years to conceive him and he was their only child.

They have been unable to conceive again despite IVF.

Imagine how heartbreaking it is for someone to hear a comment like this when they have not only lost a child but also are infertile.

whiteandyelloworchid Fri 23-Nov-12 16:49:52

i think i'm going to try and avoid her as much as possible.
i just wish i didn't really say anything to her now other than, i'm okish thanks
perhaps thats what i should say next time
not get drawn into disscussing things
i rarely see meet up with her these days, yet i could easily bump into her.

i can't see why the drs would tell me theres a minscule chance of this happening again, and that in their opinion its chance occurance not genetic if that wasnt true as i'm sure they do not like dealing with all this stuff either

i totally agree people want me to be over it, to move on as they can't handle the new me, im too heavy for them.
as they can't face how uncomfortable it makes them

just wish i hadnt said anything to her, oh well ive have no so guess i will have to chalk it up to experience

i dont think anti ds will help me personally at all, all i think the would do for me is delay the greiving process, and then when i get off them eventually, i will feel as shit as i do now, i'd rather just go through it if i can

yes this is my reality, my life and i think others forget that, we deal with the 24/7 for the rest of our lives.
they can't cope with a tiny amount of time being uncomfortable

thanks for the listening and understanding
good to get it off my chest a bit

whiteandyelloworchid Fri 23-Nov-12 16:58:32

expat, i can see why you moved so far away now you mum sounds like a nightmare.
glad you have yoour sister for real support

on thinking about what this friend said to me today, the part that really telling, is when she said something, about the way you deal with it, will depend on whever i get over it or not.
really that sums it up
the total lack of understanding is there in one nutshell

Helyantha Fri 23-Nov-12 17:09:49

Hello all. I'm so sorry to read that the dhacs have been making their presence felt again sad You are doing brilliantly white - it took me months and months before I could even contemplate doing something like a spa day & even now I worry about what questions I'll be asked. As for focusing on what we've got: yeah, great - haven't people noticed that huge, child-shaped hole?

Just thought I'd pop by to update you on my job. Everything was looking really bad - I absolutely believed that I would have to leave & my career would be finished. I had a meeting with my manager & someone else that started off with lots of tension, but I kept thinking of everything we've been through as a family & how my DS would not want me to walk away without standing up for myself (& I prayed...) And it worked! Suddenly, for no real reason, my boss apologised & offered me a complete change of role which would mean I could do the things I'm best at, rather than trying to do something I had said repeatedly I wasn't trained for. I can't really believe it! Many thanks for your thoughts & prayers - I am sure they helped.

whiteandyelloworchid Fri 23-Nov-12 17:13:10

thanks so much for your help and support everyone, can't tell you how much you help pull me through xx

helyantha, great to hear you good news, its very encouraging to hear, really pleased for you

chipmonkey Fri 23-Nov-12 17:54:43

Oh, Helyantha, I really am so relieved for you! Sometimes prayers and positive thoughts do seem to work. ( If only they worked in keeping our children alive!) Maybe your angel worked some magic for you?

Helyantha Fri 23-Nov-12 17:58:35

Chip I'm convinced he did work some magic - it's certainly felt like it this week!

expatinscotland Fri 23-Nov-12 18:00:56

Excellent news, Hely!

white, so glad you are here and we can be here for one another.

SaintVera Fri 23-Nov-12 19:28:25

Can I just say thank you for all your words of experience - all of you?

I haven't posted much yet, only to tell you about my beautiful disabled son who died suddenly 4 months ago, aged 16. Today I have been so sad. Although I hate, hate, hate it that I am in the bereavement section, life is just slightly less dreadful because you share your experiences. Thank you

I have also recently had 'helpful' suggestions that I should give myself 'until the end of October' and then get over it (it's November and I still haven't got over it), and that the inquest must have given me 'closure'. I heard from an old friend for the first time today - I had been surprised not to hear from her at all when my son died. Her card was part of a group mailing, selling her husband's artwork. She had scrawled a hasty 'sorry for your loss' on the back of her sales pitch. Shockingly crass.

Having said all that, I am keen to appreciate how good and thoughtful most people have been, even people who don't know us that well and I haven't held back from telling people how I feel. I have completely avoided big social events and too many strangers. When my son was born with his disabilities, I became very bitter for a long time about people who crossed the road to avoid me. Over time, I mellowed and tried to remember that most people mean well and some just have no idea how to cope with their own feelings. I had to admit that I might have been one of the useless people if faced with the same situation. Grief gets most of us - one day they will learn.

chipmonkey Fri 23-Nov-12 19:44:32

wtf, you were given a time limit, Vera? Who even thinks like that? How could anyone have imagined you would be able to wake up on the 1st of November and think "Righteo, that's my grieving done now, what's for breakfast?"

I think people don't know what to say to "fix" the grief so they would prefer if we just got over it.

And you really do get to find out who your friends are. And sadly who aren't really your friends.

SaintVera Fri 23-Nov-12 19:46:25

Top Tips Don't expect us ever to get over it

SaintVera Fri 23-Nov-12 19:54:36

yes chip, you do get to know your true friends - and sometimes make new ones - as the old ones who can't cope with your new self disappear. I do wonder who will still listen in two or three or four years time when I still haven't got over my beautiful boy

expatinscotland Fri 23-Nov-12 20:27:11

'I do wonder who will still listen in two or three or four years time when I still haven't got over my beautiful boy '

There was a sad thread on here a couple of months back, from an OP whose son had been born still three years ago, and she wanted to mark his birthday with her friends.

Sadly, the vast majority of people told her to just mark the occassion with close family, to move on, that people are uncomfortable since it's been three years, etc etc.

Wow. Hope it never happens to them, then.

I wonder what things will be like in a few years' time too. I remember that thread too, expat, and it sounded big alarm bells for me. I was so sad for that poor mother.

chipmonkey Fri 23-Nov-12 23:16:28

Hey, we'll still have each other, folks!

True. <hands chip back her freshly-laundered hanky from yesterday>

lavandes Sat 24-Nov-12 00:01:32

We are 2 years 7 months down this crappy path and I still cannot face Christmas as it was before (going to stay wherever Richard was working, lots of brilliant times) so this year we are taking our grandsons to a holiday park, (we have been there before), and having a 'HI DE HI' Christmas. Grandsons are looking forward to it which is all that matters. I honestly couldn't care less, we will all be together it doesn't matter where we are but it will be completely different from past Xmases's so I will be able to face it, for me it is all about self preservation , selfish I know but this is how it is for now x

expatinscotland Sat 24-Nov-12 00:17:21

Oh, we do! Hope you ladies don't mind, but I have a litany of our children's names, and their birth and death dates, when possible, to remember, and to speak their names every Saturday at 11.25PM, the time of Aillidh's death of 7/7/12.

whiteandyelloworchid Sat 24-Nov-12 00:18:15

yeah i alos dread the thought of how people will be after 1, 2 3 4 etc years, if they are like this after 9 months

whiteandyelloworchid Sat 24-Nov-12 00:20:22

lavandes, sounds like a really good idea, to get away ona break.
i might think about that next year if this year is too difficult

expat, i don't mind at all, i'm really touched
thank you

lavandes Sat 24-Nov-12 00:22:31

I light a candle every Friday, Saturday and Sunday for our Richard and all our children and I have for the past 2 years 7 months. xx if we are away I try to go to a church and light a candle. xx

expatinscotland Sat 24-Nov-12 00:26:21

Thanks, lavandes! babywhites name is included, of course, whites.

expatinscotland Sat 24-Nov-12 00:27:00

Adding Richard's name, lavandes!

You are just the best, expat and lavandes.

white we ran away from Christmas last year. No presents, nothing. We were actually travelling on Christmas Day, and our Christmas lunch was nothing special, if not weird - beans and rice, mixed with a side of pasta!?! Being on the plane was hard, as it was filled with families and excitement and expectation, just as we were with Mia the year before going out to Australia. Yet the trip was what we needed - it was an escape which turned into a holiday. It's ok to do something different, if it's going to get you through a tough time.

My5boysandme Sat 24-Nov-12 18:19:44

Expat I think it's lovely you remember all our children when you light your candle thanks

I'm also dreading Christmas, but I have to have it as normal for the boys. I don't want them to remember the first Christmas without Dexter as sad, even tho it will be iykwim. I'm planning on going down to the grave with Dh, may take some balloons.

I've just ordered this for my tree
It comes in a special box with tissue paper to keep it safe throughout the year. You get it with different pictures on it, I went for stars as Dexters headstone will have a shooting star on it.

Dexters foundation for his headstone was cemented this week, so hopefully it will mean his headstone may be up before Christmas, although we were told January ish.

whiteandyelloworchid Sat 24-Nov-12 21:39:05

hi everyone, feeling a bit brighter today, i actually saw the same persons again today,at the pool, as i took dd, i don't live in the gym! but i pretended not to see her

one thing that cheered me was dd swimming the whole length of the pool 25 metres unaided, which i thought was great.
then we had lunch then watched brave

just thought i'd better post something a bit more positive

been thinking about things today and although, there maybe friends i lose because they basically can't handle the new me, there will more friends i will gain, on here and through sands etc that i would never have met if we never had ds
so theres some really really special peole that have actually come into my life since we lost ds and that i will try to remind myself of.

and although i feel so isolated in my day to day life, i know i'm not alone, and i can talk to you guys anytime

five boys wow thats beautiful, i really like that

think a holiday would do all three of us the world of good, but funds are tight at the moment,perhaps a wekend away or day out or something to look forward to would help

whiteandyelloworchid Sat 24-Nov-12 22:00:51

here i really love this

My5boysandme Sat 24-Nov-12 22:15:03

Orchid I really like that, but we have more names than would fit on it, I'm sure I'd be able to get something like it made elsewhere.

whiteandyelloworchid Sat 24-Nov-12 22:21:48

fiveboys, yeah it might be possible to make your own, or get one made alot lot cheaper, and fit all your names on.

how are you doing?

My5boysandme Sat 24-Nov-12 22:42:08

Pretty crappy tbh. I seem to be 2 people at the moment, the strong mum that everyone sees, and the real me who is a bloody mess when I'm on my own. I seem to put on my game face at the front door in the morning.

I have 2 befrienders from the Scottish cot death trust that I've been emailing, they have been fantastic it's so good to talk to people who are going through this hell too.

How are things with you? I'm really sorry to hear what your 'friend' said, it was really horrid. I wish these people could walk a mile in our shoes to see how bloody hard it really is. Do they really think we want to feel like this we have no control over how we feel day to day.

This may make no sense, but it comforts me, the pain I feel every day is worth it, it means Dexter was here, he was loved and he loved us back.

whiteandyelloworchid Sat 24-Nov-12 22:59:21

fiveboys, no that makes total sense to me, the 2 perosn thing, i do that too.
on the school run etc, i put on my best smile to face the world, then in the middle of the night, the small hours i am a mess, i still find the nights the hardest
people say your so brave etc and you feel like a fake, i say well you dont see me at 2am
you sort of feel bad if you show how you feel, as people tell you to be grateful for what you do have, which of course we are
or if you put on a brave face, you feel people will think your a heartless cow
it can feel like a no win situation

i'm glad you have some befrienders, is there loss as recent as yours?
i have two people from sands i talk to alot
it helps me alot
and everyone on here
do you go to any support groups?
i havent yet, but im thinking of it.
its weird but its like i cant face it
at the moment

now ive had a bit of time to reflect i'm a bit pissed off with that friend, i think im going ot avoid her for a while

your so right, do people actually think we want to feel this sad, never knowing if we will have a good or bad day, never knowing when we might just suddenly burst into tears

yes i get what you mean about wanting to feel the pain, i totally understand that
dexter loves you and you love him back that is very true
reminds me of part of the poem we had at ds funeral, not sure if ive already told you about that poem, but it has a fab line that sums that sentiment up

hang on i shall get it brb xx

whiteandyelloworchid Sat 24-Nov-12 23:06:58

When tomorrow starts without me and I am not there to see,
If the sun should rise and find your eyes all filled with tears for me.
I wish so much you wouldn’t cry the way you did today,
While thinking of the many things we didn’t get to say.
THIS LINE @@ I know how much you love me, as much as I love you,

AND THIS @@ And each time you think of me and I’ll know you miss me too.
But when tomorrow starts without me, please try to understand,
That an angel came and called my name and took me by the hand.
And said my place was ready in heaven above,
And that I’d have to leave all those I dearly love.

So when tomorrow starts with out me, don’t think we are far apart,
For every time you think of me, I’m right here I’m your heart

those parts remind me of what you were saying

My5boysandme Sat 24-Nov-12 23:23:19

Yy to the heartless cow, I said to dh people must think I'm a cold hearted bitch as I don't show the real me.

That poem is lovely, sums up what I was trying to say.

The befrienders one lost their baby 5 years ago, and one just last year. The one who's baby died last year has 3 older children, it helps being able to talk about how it affects them and what they did.

My5boysandme Sat 24-Nov-12 23:25:34

A friend sent me this, had me crying.

A mother has a baby This we know is true. But, God, can you be a mother when your baby is not with you?

Yes, you can He replied, With confidence in His voice. I give many women babies When they leave is not their choice.

Some I send for a lifetime, And others just for a day. And some I send to feel your womb, But there's no need to stay.

I just don't understand this God, I want my baby here. He took a breath and cleared His throat And then I saw a tear.

I wish I could show you What your child is doing today. If you could see your child smile With other children and say:

"We go to earth to learn our lessons Of love and life and fear. My mommy loved me oh so much I got to come straight here.

I feel so lucky to have a mom Who has so much love for me. I learned my lessons very quickly, My mommy set me free.

I miss my mommy Oh so much, But I visit every day. When she goes to sleep On her pillow is where I lay.

expatinscotland Sat 24-Nov-12 23:26:40

No, no support groups or anything but talking to others who've lost their children.

There's no real in-person support in this rural area.

We just stumble along.

She died at 11.25PM on Saturday.

Tomorrow will be one year since her diagnosis.

whiteandyelloworchid Sat 24-Nov-12 23:46:18

oh that poem is lovely.

yes it is really hard to find people tp talk to about how it effects your living children, as most people think they are not that affected

even yesterday, dd was cryign about ds, saying when adults die, do they do to heaven and not come back, liek how babies do not come back.
i'm glad she feela ble to talk to us and ask questions though
she also asked me to read the book, we were gonna have a baby but we had an angel instead, and she had a good old cry, but has seemed brighter today.
yet to the outside world they think shes not affected at all and she is, she had her won hopes and dreams, and now thsi has happend to all of us.
dd also feels our pain i know she does, like yesterday i was upset about what this person had said, and perhaps i was quieter than normal, and i know dd can sense my pain, despite my best efforts beacuse its funnyhow she was feeling the pain yesterday when i was
shes a fantastic girl and very caring and sensitive, but i worry alot about what long term effect this could have on her.
i ddnt want her to have all experenced all this hurt and upset, i wanted her childhood full of love and wonderful times and not to have experienced death at sucha young age
probably my biggest worry along with worrying about how do you live with this sadness forever

the two friends i know from sands, dont have any other children other than the boys they lost.

when dd was crying yesterday, i just say to her its normal to feel sad when someone we love dies, but we will love ds forever even though he is dead and he will love us too
and i just cuddle her and let her, let it all out
today shes some a sticking picture for ds that she wants to send up to heaven ona balloon, i think we will do that tomorrow

how are ypur other children doing?

expat, i'm sure your mind must me going wild, it feels to me like these type of anniversary are almost like reliving it all in someway.becuse you can't help but think this time last year this was happening
have you lit a's candle?
what time do you normally go to bed?

expatinscotland Sat 24-Nov-12 23:51:08

I lit her candle earlier today, but will again after midnight as I don't usually go to bed till quite late.

whiteandyelloworchid Sun 25-Nov-12 00:00:08

i thought you were a bit of a night owl like myslef

did you get a special candle for A?

i was looking at the link five boys posted earlier and theres a tealight/candle holder, that you can have a name on and then snowflakes, i was thinking of trying to make my own, in hobbycraft you can get silver letters, and probably some sort of silver snowflake stickers, i could get dd to help me

whiteandyelloworchid Sun 25-Nov-12 00:01:15

i got one for ds when he was blessed from the chaplin, but i want ot keep that one and not use it iyswim, so i would like to get one for ds that i can use

expatinscotland Sun 25-Nov-12 00:01:59

I made her one from her tea mug.

whiteandyelloworchid Sun 25-Nov-12 00:04:59

oh yeah thats right, you have told me that before, but you know what im like with my concentration issues!
forgive my forgetfulness
oh yes thats really lovely, and so personal.
was it difficult to do?

expatinscotland Sun 25-Nov-12 17:06:54

It's super easy. I ordered a bag of soya wax shavings and wicks on Ebay. You light another candle and secure the wick to the bottom of whatever you're using as a candleholder with molten wax. Then melt the shavings in a pan placed in another pan of boiling water, add whatever scent you wish and pour into the candleholder and leave to harden.

You can even resuse the wax after your candle burns out by freezing the candleholder, popping out the wax and remelting it.

Today is a year since Aillidh's diagnosis. Spent it hanging out with the kids and having a good clear out. 3 bags to cloth recycling, a bag of outgrown uniforms for the school and a huge bag of kids' clothing in excellent condition for Bernardo's.

Will light her candle again tonight and say her litany.

whiteandyelloworchid Sun 25-Nov-12 17:28:39

That sounds lovely expat, really nice and sounds fairly easy to do.
Sounds like you've done an excellent kid today.
Been thinkjng of you.

Do any of you find going to children's partys difficult? Dd had one today and I found it really hard what do you guys do? Just not stay? Dh thinks I should just not stay

My5boysandme Sun 25-Nov-12 17:32:09

Thinking of you today expat

Orchid the boys have been invited to a few parties recently, but we've just not gone, can't face it, plus I've never been able to just leave them at parties, always felt to guilty.

whiteandyelloworchid Sun 25-Nov-12 17:37:59

Kid? Sorry excuse my phone, I ment job.

whiteandyelloworchid Sun 25-Nov-12 17:39:03

Five boys what do you do. Get your dh to drop and go? X or does your dh stay

expatinscotland Sun 25-Nov-12 18:03:03

I drop DD2 at parties now, as she's nearly 7. DS has only been invited to two and DH took him.

My5boysandme Sun 25-Nov-12 18:37:07

No birthday parties always fall to me. Usually it's fine, but recently just not up to taking them.

whiteandyelloworchid Sun 25-Nov-12 22:26:57

the party i took dd to today, was really hard as there was several mums there with babies, then the person who sat next to me, was telling me she was pg, i said all the right things such as thats great news congratulations etc
but she kept on and on about it, every little detail
i tried to divert the conversation onto things like, have you started your christmas shopping etc, but what ever i said she would bring the conversation back round to "the baby in her tummy"
and say oh well i went the other day and you know what its like when your pg you get so tired, so i had to come home
etc etc
so everytime i tried to change the subject she would change it back
she does knwo what we have been through too.
its not like she doesnt know

i just find seeing people so hard, i just do not want to face people

do you think i should get dh to take dd to any other parties coming up?
just don't know if i would actually be better off retreating from social things i find too hard

its really the face people i am finding so so hard at them moment

sorry to go on about myself again

white if you think you can go along to birthday parties, then do. But it might be an idea to practise those sentences beforehand, (sorry, I'd rather not talk about this, it is too painful for me, etc) simply so you are prepared to shut off unnecessarily painful or prolonged conversations when you start feeling uncomfortable. I think you are just a very nice and polite person (far more than me) however, I am not sure that following normal social conventions is useful to you right now. You don't need additional burdens of hurt and pain from thoughtless people. Please, please protect yourself.

whiteandyelloworchid Sun 25-Nov-12 22:57:07

mias mummy, what should i do when say this person starts going on and on about her pg then, just say say somehting like i don't feel like talking about this?

also someone else said to me, youve had a really difficult year havent you.
and i find it hard as i never know when someones going to bring ds up.
its like i feel like i have to be on guard all the time
this is the first time this person has even mentioned ds to me, so after 9 months decides to try and start a conversation with me about ds at a childrens party

Yep, that is exactly what you say!!

As for the other friend who mentioned little orchid, i would say something like "yes, it had been the worst of my life. But thank you for acknowledging my son, not many people do. I miss him do much." and if you cry, it really doesn't matter...

whiteandyelloworchid Sun 25-Nov-12 23:11:12

thanks mias mummy, i never used ti be this much of a doormat, i used to be really good at protecting myself.

perhaps i need to somehow build myself up more

suppose it was nice of her really, but i kind of find it hard, not knowing when or if people will bring up ds
leaves me in a state of on edge really
but i suppose i ought to just think t least she has tried to show that she cares, either that or fancies a bit of gossip fodder
<jeez i really have become alot more cynical these days too>

perhaps i should just hibinate over the winter, and come back out inthe spring

chipmonkey Sun 25-Nov-12 23:17:17

white, say "I'm sorry, I know you're really excited about your baby but to be honest, after losing babyorchid, I find it really hard to talk about pregnancy and babies so would you mind it we didn't? I'm sure you understand".

Honestly, some people have a lump of wood where their brain should be, you'd think you wouldn't need to point it out!

fengirl1 Sun 25-Nov-12 23:19:11

I started to read this thread but couldn't carry on (for reasons which I won't or can't go into) but I will say this - grief is an honest emotion - in all of its forms, never feel ashamed to express it. The very reason why we don't talk about it is because we don't talk about it, does that make sense? I so wish we could find a way to talk about loss more easily. I feel for all of you (and me if I'm honest). I hope that with the passing of time you will all find your loss less painful. Xxxx

missymoomoomee Sun 25-Nov-12 23:26:28

white just prepare a short answer to cut people short, be pretty blunt about it as when people are so absorbed in their own lives they seem to forget about other peoples. Don't be worried about upsetting anyone and don't start hiding yourself away. The problem with that is that you will still have these situations to deal with so you are only delaying it really sad

whiteandyelloworchid Sun 25-Nov-12 23:26:39

thanks chip, i will try that, i will try harder to assert myself

Morning girls xx

chipmonkey Mon 26-Nov-12 11:24:49

Morning, shabba xx

3girlies Mon 26-Nov-12 18:37:18

21 weeks today since we lost our beautiful Flora, was so sad at the weekend when out shopping for some Christmas bits for our girls and knowing she won't be with us this year, how she loved all the Christmas stuff.
It is another one of those dreaded firsts, first Christmas without her. I know it is the same for some other families here.
Just don't know how I will handle it all.

chipmonkey Mon 26-Nov-12 19:48:48

3girlies, the first is hard and tbh, I'm not massively looking forward to our second either but I am trying to think of it as another day without her, neither better nor worse than the other days without her.

whiteandyelloworchid Mon 26-Nov-12 20:13:43

hi everyone, yes i try and say to myself chips mantra christmas is just another day, i said that to myself the other day when tears were filling my eyes when i was in the car

had a much better day today, went to my cousins, she lost her dd at 18 months, and we had a good hug and a good chat and i felt alot better, and more optimistic about the future

3girlies Mon 26-Nov-12 20:22:04

Well done white and thanks chip, I will think along those lines. Wish I physically (as opposed to on here, YKWIM) knew some other recently bereaved parents to talk to, must do something about it.

whiteandyelloworchid Mon 26-Nov-12 20:26:41

3girlies yes i think that does help alot, i have two friends i know since losing ds, one from about a month after who lost her son a week after i lost mine
we are firm friends now
and another we were asked ot meet up with from the lady that runs sands

we all try and pull each other through.

is there any where[like sands] you could go to find others in a similar situation?

My5boysandme Mon 26-Nov-12 20:45:59

Had the boys parents night tonight, everywhere I looked I seen babies, had a mini meltdown in the school sad everyone was lovely and we got taken in front of some other parents. That's the 1st time I've cried in front of anyone at the school. Exactly 9 weeks to the minute since my by died. I kiss my boy so so much

My5boysandme Mon 26-Nov-12 20:48:39

*boy *miss

whiteandyelloworchid Mon 26-Nov-12 20:57:27

you did really well you know, just to get down there.
wishi could bring your ds back and all our lovely children

SaintVera Mon 26-Nov-12 21:01:49

I am missing my darling son Sean tonight so dreadfully. He died on 9th July. I am in agony. I feel I just need to write it down.

I am sorry for all of us who are in such pain and hope and pray (in a non-religious sort of way) that it passes soon.

whiteandyelloworchid Mon 26-Nov-12 21:06:39

hi saintvera, i'm sorry you are going through this too.
thinking of you
really hopethis pain eases eventually,even just a bit, really really do

SaintVera Mon 26-Nov-12 21:20:16

Thank you white. It comes in waves, as so many of you will know. I wish it would stop but I keep having to remind myself it is early days x

expatinscotland Mon 26-Nov-12 21:22:05

It's very painful, Vera. My daughter died 7 July.


whiteandyelloworchid Mon 26-Nov-12 21:23:36

yes its very early days (((saintvera)))))
it does def come in waves, and you never knwo when a wave will hit, in my case usually at the most inconvienant time.

i guess the waves of grief happen because its too much for the mind to cope with, i try to just do my best to get through the waves, and when i feel ok, try and sort of enjoy feeling ok.
and try to worry about the next wave you can already feel swelling

whiteandyelloworchid Mon 26-Nov-12 21:23:59

evening expat

Its been 30 years since my precious twin baby boy died and 20 years since my 'mad Matty' was killed but there are times when it bites my rear end so hard that it takes my breath away.

I wouldn't go back to the early days of grief for millions of pounds xx

SaintVera Mon 26-Nov-12 22:24:13

Oh expat, I read before that your darling Aillidh died just before my Sean. I am so dreadfully sorry - for us both. The inquest condluded that Sean probably died of SUDEP (sudden unexpected death in epilepsy). He wasn't even diagnosed with epilepsy.

For the rest of the country, the summer of 2012 was about the Olympics. Not for us.

shabba I also know about your two precious children. How glad I am that you come on here and offer us help. Thank you. I am so pleased that the early days were worse than now for you. It gives me great hope. I have to survive. I can't contemplate not surviving

whiteandyelloworchid Mon 26-Nov-12 22:29:09

yes ive often thought that 2012 is a memorable year for alot of people, but for different reasons for us

chipmonkey Mon 26-Nov-12 23:09:34

It really does help when you know someone who has lost a child. My aunt was wonderful. She, like shabba, lost two of her sons, actually shabs, now that I think of it, eerily like you, one of her sons died in theatre having an operation on his heart, the other in a road traffic accident.
She wrote me a lovely letter, ( one of those people who still write letters) and said "You never get over it but it does get easier to bear".
I held on to those words for dear life last year and still do.

chipmonkey Mon 26-Nov-12 23:16:01

2011 was Sylvie-Rose's year. She was conceived, she was born and she died, all in that one year.
In work, sometimes I'll be talking to a patient and saying "You last had an eye exam in 2011" and I think to myself "Have you any idea what that year means to me?" Of course I don't say it out loud and they are none the wiser.

I found it hard to move to 2012. I felt like I was leaving her behind. We always go down to my Mum's house for New Years Eve. I lit a candle beside a little angel figure at 11pm and kept it burning till 1am. It was my way of keeping her with me.

whiteandyelloworchid Mon 26-Nov-12 23:59:03

I think us mums on this thread, together, we are going pull each other through

You all really are inspirational woman

chipmonkey Tue 27-Nov-12 00:00:44

That we will, white!
What's good about this thread is that at least we don't hit rock bottom all at the same time so we can pull each other up.

whiteandyelloworchid Tue 27-Nov-12 09:33:23

yeah thats what i was noticing chip
we all go through up and downs at different times
some times i feel v low and like a drain,feel guilty for going on about myself, and sometimes i feel okish and hopefully i can be helpful to others, well at least try my best
as we all do

3girlies Tue 27-Nov-12 10:17:28

saintvera I lost my daughter on the 2nd July this year after a year long battle with a brain tumour, so early for us and expat. I am learning to live with getting up every morning and knowing it is another day where I will not see or talk to Flora, so very painful sometimes it is overwhelming, we have 2 other girls so need to keep going for them, they have been through so much. Love to all on this thread. X

whiteandyelloworchid Tue 27-Nov-12 15:58:47

hi guys, just checking in with you all.

i'm actually been doing ok today,well good for me actually, went to a friends for lunch was nice. got a spare flower container for ds headstone.
so i can do the flowers at home then just switch containers, as its hard kneeing down inthe churchyard in this weather
plus windy and things blow everywhere.

i also got ds a little teddy staue from the stone masons to sit on ds' headstone, was very expensive, but its suppose to last.
taking it down on sunday with my family and my brothers family

and also the star we ordered for the tree is here, arrived today.
so sitting on my kitchen table theres three things for ds, the teddy, the star and the flower container.
so i feel him close to me today

then when i got home from the school run, a white feather in the livingroom floor, i sure it wasnt there when i left for the school.

i will find the links to the star and
teddy brb

whiteandyelloworchid Tue 27-Nov-12 16:08:11

it is this teddy, but its silver, which i think will look nice next to the silver lettering


the star say, ds name, dob, then simply, always loved, always remembered

its really nice, really pleased with it, and was good for 10pounds inc p and p

My5boysandme Tue 27-Nov-12 17:14:58

Today has not been any better after last night.

This morning ds4(3) announced that he misses Dexter, I have been crying on and off all day just thinking about it. Then ds1(9) came home from school and was crying for 30mins saying how much he misses Dexter. Then he said e doesn't want any presents at Christmas as Dexter won't be getting any. I told him Dexter would be getting presents, that we were going to take flowers and balloons down to his grave, this calmed him down a bit.

Was already dreading Christmas, but knowing that the boys are upset about it too, just makes it worse. I was hoping the excitement of Christmas would make it easier for them. They are children, yet they've been through so much, nothing is ever going to be the same for any of us sad

SaintVera Tue 27-Nov-12 20:03:04

3girlies what a beautiful girl your Flora was. And gorgeous Dexter,*My5boys*. I am crying for your losses. SUCH early days for all of us. I also have two other children (only one at home) and a step-daughter and I have to survive. My daily goal is to get up each morning and never give up and go back to bed. I also like to walk daily, fast and furiously.

Keeping moving is all I can do.

My DS felt so low he phoned a helpline today while I was at work. The woman who answered was a parent of a special needs child who died several years ago. He got great comfort from speaking to her.

Your posts after my desperate post last night were little lights in the dark. Thank you. Today was bad but not quite as bad as yesterday.

My son, Danny, was too young to remember what he was like after his twin brother died. His memories (as he has got older - will be 31 soon after Xmas) are what we have told him. When Gareth died Danny would spend hours screaming - not crying just screaming. Also he wanted us to hold him all the time - so even at 7 months old he knew something was very wrong.

When Matt was killed Danny was 10. For a few days he was manic. He got his bike and rode up and down the street laughing out loud. I begged him not to but he did it over and over. Then he dragged his mattress into our room and put it at the side of my bed. I then had to hold his hand all night. He started sleep walking regularly. After a few months we went to see a child psychologist. I personally think that she 'saved him.'

We had 'family meetings' - it was often just myself and Danny. I explained that we had to keep going - we had to stick close together and 'sod the world!' He has become a wonderful adult, and a wonderful husband but most precious of all the most amazing Daddy I have ever seen.

Sit with your children and always, always, always tell them the truth about the loss of their sibling and about how you are feeling. Crying in front of them WILL NOT HARM THEM IN ANY WAY. I tried to hide my tears from my son but then said 'You have done nothing wrong....I am having a rotten day and need a love.

5boys - why dont you let your children get a little memory box and maybe get them to do drawings or little notes for Dexter, then they can store them in his box? Or maybe they could each choose a bauble for the tree for Dexter and put them on themselves?


expatinscotland Tue 27-Nov-12 22:29:11

THANK YOU for that post, shabba. I cry in front of my two. DS is so young, he just turned 4 a few weeks ago. I was crying when last we were at the cemetary and he said, 'Mummy, stop crying!' DD2, she'll be 7 in a couple of weeks said, 'She'll cry till she dies.' I told them it wasn't their fault. She said, 'No, I suppose not. It's leukaemia's.'

The man whose son died 11 years ago when he was 20 was there. His son is in the next row. He came up, said he hoped I didn't mind. I said no. He got down to DS's level and said, 'She cries because she misses your sister, okay, wee man?' He seemed to take it in.

Hope to get them some bereavement counselling next year as there's a long wait for it.

Need to get in touch with CLIC because they run a week long holiday at their facility in Ayrshire strictly for the families of the bereaved, completely with play specialists trained in counselling for bereaved children.

There's a lot of charities out there that help sick children with cancer, and that's fantastic, but very few who work with those children left behind when their sibling or loved one actually doesn't make it and dies of their cancer or its treatment.

whiteandyelloworchid Tue 27-Nov-12 23:08:34

last week dd asked me, if when adults die, do they go to heaven and not come back either,then she asked me to read we were gonna have a baby but had ana ngel instead, then she sobbed, most people think it does effect her, but it does, massively, it breaks my heart that shes going through this too.
its not what i wanted for her at all.
only thing i try to tell myself, is yes it changes you, but hopefully not always in a totally negative way, i find my dd is very caring, compassionate and sensitive, shes always been a caring girl, but perhaps this makes her more so,
although then again i worry she will be too sensitive!

but i guess all we can do is be as open and honest as possible
and include them in things, make sure they know its noones fault and how much we love them
and try to not feel too guilty they are going through this, as this is certainly not what we wanted to happen either and feeling bad they are suffering won't really help

fioled Tue 27-Nov-12 23:23:41

Is the 'We were gonna have a baby' book worth getting?

I often wonder how X will ever grasp his sister, or our pain, how he'll ever understand when she was before him. I'm so scared he'll think we only have him because we don't have her, because to some extent its true. We wouldn't have been ttc for him when we were if she had lived. God I hate this. Learning about a dead sister shoudn't have to be part of his life.

I'm in a spectacularly shite place at the moment. I'm completely not coping with everyone around me having baby girls and I don't know how to deal with it. I miss my baby girl.

I'm so tired of hurting. Grief going around and around in circles and this is it. Forever circles, forever these lows, B forever dead.

expatinscotland Tue 27-Nov-12 23:27:04

DD2 never cries. She cried only once, briefly, when she came back to Glasgow and I told her that her sister had died. But then again, I hardly did, either, the entire time Aillidh was sick and even when she died. Her cons cried, the transplant doc cried, the cons who pulled her vent cried.

Oh Fi xxx I've been trying to remember 'stuff' - Matt knew that he came along because Gareth had died. I remember saying something like....we were all so very very sad and then you came along and brought the sunshine back into our lives. He also knew how much we loved him for him. Your X will know this as well.

I promise you my friend....as I always do....the raw pain of grief does soften - you never forget but the long journey does get softer and less consuming. Sending my love as always xx

expatinscotland Tue 27-Nov-12 23:35:26

Oh, fio!

I think we all wish who we are now could be different. I know shabba is right, because I heard it from that other woman I was speaking to, whose daughter, then her only child, died of AML 40 years ago and 10 years ago, her own beloved husband, of a brain tumour. She wrote, 'I promise you, if you live so long, the light will come on again, but I can't tell you it's something you ever 'get over', so to speak.' That is enough for me at present.

We all have a child-shaped hole in our lives, don't we? And it is massive, sometimes it stretches to consume everything, at others, it is smaller, and somehow more manageable. But we can never ignore it. It is always there. It is a part of us, of who we are, who we will forever be.

white and fooled A beautiful friend who has lost her husband to cancer, as well as a son at birth, gave us a special book over the weekend called "The Invisible String." It explains to children how we are never alone. "People who love each other are always connected by a very special String made of love. Even though you can't see it with your eyes, you can can feel it deep in your heart and know that you are always connected to the ones you love." Perhaps it might help, as it also makes reference to an uncle who has died, but who is still tied with this invisible string of love to his whole family.

chipmonkey Wed 28-Nov-12 11:10:01

fioled, I find it hard to cope with baby girls too, particularly little girls who are Sylvie-Rose's age. I hate that we don't have pink plastic tat lying around the house, even though I never liked Disney Princessy things and hoped she wouldn't be too keen on them! When she was in SCBU, she had so many blankets, vests and babygro's that I used to do a pink wash when I was doing the laundry. I miss that pink wash! The boys miss having a sister. Ds1 so loved having a little sister. But you never know, fioled, B and X might yet have a little sister.

That book "We were gonna have a baby...." looks like a lovely book. I meant to order it a couple of times for ds4 but the title made me too sad! I might be able to manage to buy it now, though!

expat, for the first few months, I cried and cried and cried. Even if someone had said to me "It's bad to cry in front of them" I don't think I could have stopped. But it isn't a bad thing. If you think about it, if you didn't cry, what would they think? That their sister, one of them, died and it didn't really affect you? I wouldn't like the boys to think that if anything happened to them that I wouldn't be all that bothered! That man you met in the cemetery sounds lovely.

whiteandyelloworchid Wed 28-Nov-12 19:39:21

the we were gonna have a baby book, is very sad, it always makes my dd sob, i have thought of hding it, but she only asks to read it sometimes, almost as if she wants to read that when she needs to let a few tears out, so i don't hide it, so shes got it

a good oe thats less sad is no matter what, mainly explaining a parents ove for a child is unconditional even in death
but nowhere near as sad
she does not cry at that one, but can look very thoughtful indeed

mias mummy that reminds me of that poem the cord, hang on i shall go and find it brb

whiteandyelloworchid Wed 28-Nov-12 19:40:18

The Cord
Author Unknown
We are connected,
My child and I,
By an invisible cord,
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't be seen
By any on earth.

This cord does its work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised…. I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take away!

3girlies Wed 28-Nov-12 19:42:41

chipmonkey you have helped me a great deal with thinking about Christmas as just another day without Flora and nothing special, I need things like that to help me get things in perspective. Just think it will be hard as childhood has left this house suddenly as my other girls are 11 and 15 and quite grown up for their ages, it is all just wrong.
Hope you are all OK today and getting by.

whiteandyelloworchid Wed 28-Nov-12 19:47:30

fioled, at th eback of the we were gonna have a baby but had an angel instead, theres an advert for a book from the same range its called someone came before you, its for the child that comes after the one who died.

whiteandyelloworchid Wed 28-Nov-12 19:48:55

dd also has one that was given to her from the vicar, its called pip on the edge of heaven, thats nice, its about explaining heaven to a child, its a childrens book.

whiteandyelloworchid Wed 28-Nov-12 19:50:27

3girlies, i find it helps me too, telling myself what chip said, its just another day

whiteandyelloworchid Wed 28-Nov-12 19:51:25

is any one else doing that oxford university study?

so far ive only opened the envelop, i was thinking of getting it out tonight

whiteandyelloworchid Wed 28-Nov-12 19:51:47

its quite thick, thicker than i thought it would be

3littlerabbits Wed 28-Nov-12 21:48:18

Hello, I am sorry for just droppng into your thread like this, I came here bacause I had a little sister who died of cot death when I was about 5. My parents have never once mentioned her since (I am in my 30s), although I of course remember her and everything. I was thinking that reading might make me feel closer to this part of them or understand it somehow, I apologise if that is wrong of me. I just cried so much to read how much you are caring and talking to and showing your feelings to your other children. This is so good and so right I think. I know my parents did their best in their tragedy, my heart breaks for them and for me and for you. i just wanted to say that keeping talking to your children seems to me the best thing. I wish my family had been able to do this but I understand it was too hard for them. Apologies again for my intrusion on here. Love to you all x

whiteandyelloworchid Wed 28-Nov-12 22:23:22

thanks three little rabbits, it nice to hear from someone who has been through this from the childs pov.
my dd was 4 not that far off five when ds died,so the same age as you were, so do you have any other tips to help her through, or any thing you wish your parents or other people would have done to help you at the time?

do you mind me asking this but do you remember your sister at all?
i wonder if my dd will only remember ds because we talk about ds and do things to remember him, suppose i worry that will be one of her first memories

chipmonkey Wed 28-Nov-12 23:52:59

3littlerabbits <<<HUGS>>>>

I think back in "those days" people were advised to move on quickly and from what I have heard, as soon as a baby died, friends and neighbours moved in very quickly to remove all traces of the baby as it was thought that reminders of the child would be painful.
How wrong that was As if we ever would need a reminder! The memories of our children never, ever leave us. I believe my child herself will never truly leave me either and I will be re-united with her but even if you don't believe that, the memory of your child is imprinted on your mind.

The priest who called to our house after Sylvie-Rose died, said that his niece had died of cot-death 30 years before. The parents were told at the time by their own priest that it would be better to have the funeral and burial in private with only the parents and the priest there. Now, this was Ireland and Catholic priests don't marry, so possilbly are less aware of how firm the bond is between a parent and child but even our lovely priest said it was totally wrong and that he felt he should have been there for his sister and her husband.

In that way, things are so much better now.

To Nathan and Stanley, My Beautiful Identical Boys, 31/5/12.
On the 1st of December (i thought there was a 31st of november, like an idiot)

it will be 6 months since what happened, happened. I have been unbearably sad. I think it has hit me finally. I can't stop crying. I had a pregnancy scare recently which turned out to be just that and whilst I'm glad and also bitterly disappointed...
I hope this feeling goes away, I know it wont...


expatinscotland Thu 29-Nov-12 15:58:13

Thinking of you and your family, Kate. Nearly 5 months here. I'm sorry you had to find us, but here to support you anytime. I'm sorry for your loss of Nathan and Stanley.

SaintVera Thu 29-Nov-12 18:57:30

expat I have a little black book for poems/sayings etc., that speak to me in my grief for Sean (when I am in a fit state to listen). I will add The Cord to it.

Kate I am so sorry for the loss of your beautiful, precious boys six months ago. My darling son died aged 16 on 9th July.

A few days ago, I decided that I am ready to 'do something' with Sean's room. When DH first died, I thought I would change his room straight away, then six weeks in, the agony of grief hit me like a high speed train.

Me and DH would check his room morning and night. We still do. We couldn't move anything. I kissed his photographs and spoke to him. At various times, we both lay on his bed and sobbed. Last week I lay down on the floor where we found him dead and tried to smell him.

Now, nearly six months on, I have decided out of the blue I didn't want his room to be cold, empty, gathering dust, full of his stuff but without him. I want it to be a room of light and life and warmth. DH agreed.

Our friend came today and photographed the room and his clothes. I will make a montage - Hockney-style - and frame it. We were all matter of fact. We didn't weep. Tonight, DH feels dreadful. It always takes longer for it to hit me. I feel I want to make his room beautiful.

I still haven't moved anything.

expatinscotland Thu 29-Nov-12 19:07:49

DD1 and DD2 shared a room. I haven't changed it yet. I sleep in DD1's bed.

chipmonkey Thu 29-Nov-12 20:43:54

I still have Sylvie-Rose's Moses basket in our room
It has our Woolly Hugs blanket in it, a gingham pony my cousin bought for her and an Upsy Daisy Doll.

My5boysandme Thu 29-Nov-12 21:20:28

We moved house three weeks ago. I have all Dexters clothes and other bits and bobs in an big ottoman at the bottom of our bed. Dexters memory box from hospital is in there too. His pram is at my mums, his cot has been thrown out. His Moses basket was what he was in at the funeral home, so they disposed of it for us.

I have got lots of Gareth & Matthews stuff......

I have Gareths leather pram reins with his name on them, his tiny, tiny hat from when he spent his first two weeks of life in our local childrens hospital, cards, letters and the smallest baby gro.

I have Matthews filthy dirty school bag (it was only about a month old) it is truly filthy, ONE PE plimsoll with a hole in the bottom, his Beavers jumper, a flat cap he wore for a school play and a school coat. In the pocket of the school coat there is a 20 year old packet of Scampi fries (or Scabby fries as he called them) elastic bands, a stone, and what looks like a dead worm.

My treasures reflect my sons personalities grin

expatinscotland Thu 29-Nov-12 21:58:14

Right, this is really mean, but I've had to hide some FB people and posts because I'm feeling that if I'd been more positive about A she'd have lived. I know, I know that is untrue. She had a genetic mutation in her cancer that presents in only 12% of children with acute myeloid leukaemia, a mutation of which she did not remit in her induction round, even though she achieved very good morphological remission (from 60-3% leukaemia), but it still cuts like a fucking knife. This mutation (FLT3) is utterly damning in children.

It's not that I'm not happy for others, but just that right now, I can't deal, IYKWIM.

expatinscotland Thu 29-Nov-12 22:00:10

shabba, I'm glad you have those things! Hold 'em close! smile

My5boysandme Thu 29-Nov-12 22:06:17

Expat I went on Facebook and deleted loads of people who didn't even offer any condolences of Dexters passing, and I also hid loads of people's posts from showing in my news feed if they had babies, I also deleted people who were always having some tragedy or another(ie the train was late, I have to work etc) to me a tragedy is what we've been through not some silly little thing that is insignificant. I'm so glad I don't see it anymore

expatinscotland Thu 29-Nov-12 22:15:01

Glad to know it's not just me, 5boys. I feel really mean, but I can't deal just now.

whiteandyelloworchid Thu 29-Nov-12 22:25:38

hi guys, im not on fb, so don't really know what i'm on about, but im pretty sure i wouldnt liek seeing everyones cheery updates/ what i see as boasting!
don't blame you expat

welcome kate, i'm sorry you have come to join us, and i'm really sorry for your loss, but i hope you can find some understanding and support from us all here.
we are here for you and we get it

whiteandyelloworchid Thu 29-Nov-12 22:26:46

shabs that made me smile reading about matthews treasures and his scabby fries.

SaintVera Thu 29-Nov-12 22:27:49

'Things' are all we have left aren't they?

Sean was severely learning disabled and yet a real teenager, so we have his wheelchair and incontinence pads, and symbol cards for 'no spitting', along with Jimmy Hendrix posters and electric guitars. He was a crazy, hilarious, troubled soul.

Oh shabba I just love the sound of your Matthew and his bag of tricks!

expat I have culled FB friends because what I read makes me feel crap. It might not be logical or kind, but it sounds like you are giving yourself a necessary break from stuff that naturally breaks your heart. Take care

I think that if Gareth 'had stayed' he would have been a complex character like his twin brother. Serious but funny, neat and tidy but scruffy....if any of that makes any sense?

BUT Matt - he was a law unto himself grin - hysterical rainbow baby that he was!!! He used to say telt fips (felt tips) talkie walkies (yes walkie talkies) and the best one ever Woss Baggott (Russ Abbott) - he was noisy, wild, cuddly, crazy a kisser and a lover. xxx

Miss you my boys - miss you more with each passing day xxxx

missymoomoomee Thu 29-Nov-12 22:39:49

When Emma-Lou bug died it was different to when Scott-Dot died. He had been out of hospital and his things were 'his' IYKWIM. Emma-Lou bug never got out of hospital so hadn't been in her pram or worn her clothes.

We put her pram and cot to my SILs house while we decided what to do with them. Unknown to me or DH some girl had shown up on my other SILs doorstep claiming to be 7 months pregnant by her son.

Between the pair of them they decided that my daughters things were 'spare' and gave them to this girl. I was fucking fuming and haven't spoken a word to either of them since. 6 years on it still makes me rage. I'm ashamed to say I even ignored them at my MILs funeral and they haven't met my youngest 2 daughters.

It really felt like they were secretly pleased my daughter died. The second SIL never even went to her funeral as she had planned a day shopping with her cousin on that day.

FB wasn't around when I lost Scott-Dot thankfully, I think that it was Bebo when I lost Emma-Lou Bug and I just stayed off it. I'm not on FB anymore but it pissed me off on angelversaries and birthdays when people would post things up about my children 'Remembering a special little man in heaven today' type thing. It felt like attention seeking and using my kids to do it sad

expatinscotland Thu 29-Nov-12 22:45:17

shabba, thank you for sharing them with us.

Yep, I just hide them or block. It's not that I don't wish them well, it's just that I think, 'Why wasn't it our little girl, who beat the odds?' IYKWIM. And it just brings me down and so you know, fuck it, you have to do what you can to get through because it's really, really hard.

whiteandyelloworchid Thu 29-Nov-12 22:54:45

missy i'm not suprised you are still cross, how bloody rude of them
and nasty

yes iswym about the using your child to seek attention.
i would feel a bit the same too
i think

you what i wonder with the ones that do beat the odds, do the parents ever stop to think, actually fuck we have been really really lucky, or do they simply think oh i knew x would survive, i just knew it

missymoomoomee Thu 29-Nov-12 23:03:50

I can only seak for myself here but every single day I thank my lucky stars for my children. As it turned out Emma-Lou bugs condition is genetic, but unable to be tested for, but there is a 1 in 4 chance it could happen again. I was pregnant when I was told this. Its a miracle that my children are here and I will never ever forget that.

My5boysandme Fri 30-Nov-12 16:13:02

Missy I cannot believe your sils. How awful for you. I would be absolutely raging too, and wouldn't have spoke to them either. I'm so pleased to hear you went on to have 2 dds. You will never forget Scott-dot or Emma-Lou but you have a beautiful reason to smile again.

Expat, don't worry about the fb thing we just need to do what we can to get through each day xx

chipmonkey Fri 30-Nov-12 19:05:06

Missy, am also shock at your SILs. Someone forgot the sensitivity chip when they were made, didn't they?

lavandes Fri 30-Nov-12 22:20:52

Hi ladies xx

How things can throw you back to square 1.

This afternoon what I thought was a police car stopped outside my house. I felt sick and tears were in my eyes I was in total panic mode. (When Richard died we were told by a policeman at our house.) Today the 'police car' was a paramedic car not a police car but they look similar it was going across the road I don't know these people they have recently moved in. I hope the day will come when I can be rational about these things but apparently not yet. It is still shit. Love to you all xx

missymoomoomee Fri 30-Nov-12 22:38:28

Thank you all, it feels good (if thats the right word) to say it, I don't really speak to anyone about what they did as it makes things awkward for DH so I appreciate you taking the time to read and respond.

lavandes I know exactly what you mean, the smallest thing can throw you right back into the moment and it takes you by surprise. You think you are over a hurdle only to have it there in front of you again. You learn to cope better but I don't think your feelings ever change really. You are right, its still shit sad xx

chipmonkey Fri 30-Nov-12 23:48:40

lavandes I think the reaction is so visceral, your brain responds emotionally before you can process what's going on. And it brings you right back to that awful, awful moment. <<<hugs>>>. You wouldn't be human if you didn't respond that way.

lavandes your post made me shiver and I know exactly what you mean.

My Mum rang on Thursday night. Her anxious voice said 'There are ambulances and police cars that have just gone past my house and they are going in your direction....is our Danny home yet?' My heart jumped into my throat but I said 'Course he is Mum, try not to worry - everybody is safe and where they should be' I managed to calm her down - my lovely, lovely Mum who even though she has Alzhaimers will never 'get over' her precious grandsons dying.

....and, YES, I rang Danny and checked he was home safe.

My5boysandme Sat 01-Dec-12 17:15:08

Know what you mean about triggers taking you back. For me it's ambulances, it takes me back to that night, where I was following the ambulance in the police car, knowing my baby was dead in the ambulance sad

expatinscotland Sat 01-Dec-12 20:13:13

Another Saturday without her. Her candle will be lit, and I will say all their names, with great love.

My triggers? So many. So many. My daughter was 9. Before she died, she had, oh, there was so much. I've made a list actually. 'Things I Can Never See or Hear Again'.

I cannot go near Yorkhill Hospital. If I see it on the news, I change the station.

The holidays. Oh, we try our best.

But we are not putting up a tree. We'll be away abroad from the 17th and not back till the 8th of January. There's no point, this year.

Next year, of course. But this year, well, she hasn't even been dead 6 months.

chipmonkey Sat 01-Dec-12 22:10:55

I'm glad you're going away, expat. I would happily have run away from Christmas last year if only I'd had somewhere to run to!

myfive, we had that awful run in the police car too but we didn't know for sure she was dead. The police woman tried to be kind and said "She's in the best hands" but I didn't think the paramedics would be able to save her. And all the bloody cars who wouldn't get out of the way for the ambulance! Even now, when I hear an ambulance, I get angry at that.

SaintVera Sat 01-Dec-12 22:20:30

Ambulances for me too.

I can't believe it's December and nearly six months since Sean died. Time is elastic - it's been the longest six months, but it feels like it has just happened.

Terribly flat and tired and low today. I miss, miss, miss my funny boy with all my heart.

Love to all you brave ladies

lavandes Sat 01-Dec-12 23:25:52

Hi ladies

Thanks for all your kind messages.

I am as ok as I can be most of the time but I cannot cope with police cars near my house or policeman around me. I think this will always be the case and I must deal with it.

Also I work in leisure centre and the son and daughter of the policeman who came to our house now work with me. I find that so difficult but I will not give in to it and retire because I need to work for a bit longer to pay for flights to see my elder son and baby grandson in OZ. How shit is this always going to be. If it were not so tragic it would be a joke IFYSWI M. I don't think these children of the policeman know who I am, they shouldn't because it would be a breach of the data protection act x

chipmonkey Sun 02-Dec-12 00:47:13

One if us should win the lottery. Just one of us. To pay for flights and places to live and a little place in the south of France to run away to. And wine!

whiteandyelloworchid Mon 03-Dec-12 09:11:51

chip if i ever win the lottery i will def get a place for us all to share
a place near the beach with a nice seaview

how is everyone today, ive been okish most of the weekend, but feel on a real low this am, just dont seem able to get things done, and at the school gates this am, when everyines chatting i just seem to feel like everyines making plans and getting on with their lives and i just feel in this weird limbo

going ot try and get some xmas shopping sorted today, but find iy hard to get movitated and stay concentrated

SaintVera Mon 03-Dec-12 09:16:50

white, I feel similar. Generally low and empty and I feel I need to cry but I can't easily. I prefer it when I am weeping all over the place.

Got to do Christmas list and think about buying presents but I can barely be bothered. Yet, leaving it until the last minute feels stressful. Good luck with your day

whiteandyelloworchid Mon 03-Dec-12 09:25:24

thanks saint vera, somedays i just feel like im in a paralle
universe than everyone else

they are all rushing along, and im wondering around lost

good luck with your day too, perhaps if we just get a start on the christmas shopping thta will help

Morning girls xx

The heavy rain we have here matches my mood today. I am going to have to have a 'word with myself' <<pins on a happy smile>>

chipmonkey Mon 03-Dec-12 09:46:46

Christmas shopping can be a nightmare. I had to leave Boots the other day, too many baby girls in buggies.
One Mum wheeled her lovely twin girls in front of me, I turned to go down another aisle to avoid them and ended up facing another set of twin baby girls in a buggy! I mentally said to whoever's in charge "Are you trying to kill me?" and went for a gingerbread latte in Starbucks!

Oh shabs, I hope the pin-on smile can turn into a real one.

I have sadly become an expert at pretence Chip. xx

chipmonkey Mon 03-Dec-12 18:58:10

Her Christmas tree is on her grave. It's all pink tinsel, pink lights, pink baubles and a pink star. I have a crib there with everyone in it except the baby Jesus who will go up on Christmas Eve.
There is a very illogical part of my brain that is thinking the baby Jesus should not be there in just a nappy-type thing in the middle of winter so he may get a blanket, seeing as Mary and Joseph appear not to have thought of it!

MrMia and I are excited, relieved, and proud to announce the safe and uneventful arrival of Finn at 9.39am this morning by elective c-section. We both couldn't help but cry at the sight of him after all the hopes and worries of these past nine months.

Upon his emergence into the world, Finn immediately showed similarities to his big sister, with a series of loud and indignant yells. He also then weed on the paediatrician not once but twice as she checked him over! wink

While Finn has dark hair, his face is very like Mia's own when she was born. And like her, he is already proving to be enthusiastic about his food and when awake, very interested in the world around him.

MrMia has happily held Finn most of the day, with a look of utmost content on his face. I am holding him in my arms now, as he sleepily peeps up at me. We can't believe Finn is finally here.

Thank you Mia darling, for this most amazing gift of happiness.

And thank you all, for the hand-holding. You are all brilliant. grin

whiteandyelloworchid Mon 03-Dec-12 19:42:35

oh wow fantastic news miasmummy, many many congratulations.
enjoy every cuddle and enjoy little finn, i know you will, hes one lucky lucky boy


Congratulations Mia I read it first on the rainbow thread and couldn't help shedding a joyful tear! Enjoy! X

chipmonkey Mon 03-Dec-12 19:52:37

Well done, Mias! Can't wait to see the pics!

Welcome to the world Finn - well done Mummy and Daddy.

I just smiled when I read your post - first time today!!xxx

whiteandyelloworchid Mon 03-Dec-12 20:06:05

chip, we took a mini tree to ds grave on sunday, and dd and my neices decorated it in red and silver, with lots of mini nativity ornaments hanging on the tree,
quite fitting for in the churchyard

then we decorated ds apple tree in our garden, dd chose pink and purple and then hung the special star {engraved with ds name, d.o.b, always loved always remembered.} on the christmas tree in the living room,

hopefully the nativity decorations won't blow away, as i would like to keep them for next year, and put them on every year

my newphew made a really nice car with ds name on it

My5boysandme Mon 03-Dec-12 20:39:21

Congratulations miasmummy, lovely name, so very happy for you smile xx

chipmonkey Mon 03-Dec-12 20:50:16

The only thing I found last year, white, was that the metalic paint did go a bit rusty by the time Christmas was over so I decided not to go for anything too expensive for the outdoor tree this year. I have little battery lights on ours as I had solar lights last year which really don't work in winter as there isn't enough daylight.
I wish we didn't have to put a Christmas tree on a grave. But in a way, it's something I can do for her.

My5boysandme Mon 03-Dec-12 21:10:25

I put a small tree in a snowman pot down for Dexter, I wish we didn't have to do it.

whiteandyelloworchid Mon 03-Dec-12 21:49:08

thanks for the advice chip, my brother and sister inlaw got the decs for the mini tree at ds'd grave and dd chose the decs for the apple tree which where not expensive, and the lights where from wilcos
i will see what they are like after xmas

yes i thought ds should be gazing at wonder at the tree in our living room, and we shouldnt have to be putting a tree down by his grave, yet its all we have, so it does feel like something nice we can do for him

i saw a paint your own dinosaur money box today in town and straight away thought i would have loved to have got that for ds

i wish we were able to give him a real teddy too, rather than the marble one we have also just put down on ds'd grave. a nice sofy fluffy one, with a blue ribbon

matildawormwood Mon 03-Dec-12 21:55:44

Oh miasmummy that is simply the best news I have heard in a very long time. Tears of happiness for you here too. I'm sure Mia is a very proud big sister. He sounds perfect xxx

whiteandyelloworchid Mon 03-Dec-12 21:58:22

chip, is it almost impossible to keep a mini christmas tree going until next year, i was thinking of planting it in the garden then digging it back up next year or planting it into a bigger pot

Massive thanks to Lottie for introducing me to this amazing version of one of my favourite songs

Remember my friends to always show your 'true colours' - never be afraid to ask for help, dont worry if you want to smile or laugh out loud. This song is amazing xxxx

Helyantha Tue 04-Dec-12 07:39:17

Welcome to the world, Finn - lovely news x

Rosduk Tue 04-Dec-12 08:51:30

For Thomas born 23-11-12. Fought for 2 hours.
You are sorely missed xx

Congratulations Miasmummy and MrMia, Finn is a gorgeous name.
Much love to you all xxx

braceyourself Tue 04-Dec-12 12:26:42


I do not want your post to go unacknowledged. I am so sorry that Thomas only lived for such a short time. My thoughts are with you. Feel free to post more if it will help.

Hi Rosduk How are you doing now? How did it go at the hospital? xx

chipmonkey Tue 04-Dec-12 13:42:59

Rosduk, so very sorry you find yourself here. please do tell us a little about Thomas, if you feel able xxxx

lavandes Tue 04-Dec-12 14:50:53

Congratulations miasmum wonderful news, enjoy, xx

My5boysandme Tue 04-Dec-12 17:34:06

rosduk so sorry to hear of your loss of Thomas. My boy Dexter died 10 weeks ago aged 13 weeks and 4 days, the ladies on this thread have been invaluable, knowing there is someone there to listen,who understands really helps. ((hugs))

whiteandyelloworchid Tue 04-Dec-12 20:15:55

rosduk, i'm so sorry for the loss of your son thomas.
i lost my little boy in feb, my ds also died shortly after he was born on the same day, hope we all can support you and listen to you, hope we can help in some small way

Welcome Rosduk but also sorry you have to be here.

Very sorry to hear about your precious son xx

cafecito Wed 05-Dec-12 01:55:12

hi, I was here once, a few years ago, and disappeared from MN for some hefty chunk of time. Just dropping in. My little girl would be 4 now, nearly 5. I went to the memorial service the other day at the hospital- they hold it annually but it's the first time I have ever been . I was there on my own and BANG it suddenly hit me, why I was there, why I am me now, what happened. I sobbed and sobbed, for the whole hour I couldn't stop the tears puring down my cheeks. I seemed to be the only person there crying - it was full, so full of other families and losses. It just hit me - I think Shabs used the phrase 'older grief bites you in the bum' wow how true. I was also unpacking recently from a house move, opened a plain white envelope completely unsuspecting and inside were DDs hand and footprints and a lock of hair from the ITU when she died. Again, BANG I was overwhelmed with the sudden reality of the situation.
After the memorial service a religious guy came up to me and said 'why were you crying it was very unusual to see you standing there alone, holding your arms like you were and crying.' WHY was I crying!!!??? FFS

Sorry to just drop in like this. I just thought you'd understand. as you were. much love to you all. xxx

whiteandyelloworchid Wed 05-Dec-12 09:20:41

cafecito, hi, i also get really really annoyed when people ask me why im crying, esp if its dh.
it think ffs is it not obvious!
ive told dh tit upsets me, and he said what he actually means is, is there anything extra thats set me off, rather than why are you crying

but at a memorial service, you certainly shouldnt need to be asked that.
what an idiot that man was, i can totally understand why that upset you

so sorry to hear about your little girl xxx

chipmonkey Wed 05-Dec-12 10:18:53

cafecito, of all the places to meet a dhac! What a twerp!
With people like that, you sometimes think it's a good thing they chose a religious life rather than inflict themselves on some poor family as a piss-poor husband and father and at the same time it's a bad thing that they chose a religious life because then they end up inflicting themselves on a poor bereaved parent!
So sorry you had to meet him that day of all days.

My5boysandme Wed 05-Dec-12 13:47:24

What is a dhac? Seen it mentioned a few times but can't work it out xx

chipmonkey Wed 05-Dec-12 14:35:17

Don't Have A Clue, myfive!

hello all, especially cafecito and rosduk. So sorry to hear that DHACs seem to be as prevalent as ever...

Just a line to thank you all for your lovely wishes over the past few days, they are very special and generous-hearted of you all. Finn and I are at home again, and MrMia and I are learning about him. But while wonderful, it's also so hard - we spent last night being awake in turn, as he is still clearing mucus from his body, and can't properly cough it up, which is very scary. Part of the legacy of loss.

cafecito Wed 05-Dec-12 22:46:19

Ah that's a dhac!! I was confused! Thank you for your kind messages. It wasn't so much the 'I'm going to ambush you with religion' more the commentary on how strange I was to be crying, it really was something else. I had to tell HIM that we all grieve differently, that I am fine day to day because I work all the time and have to be fine and that it just overwhelmed me on the spot. I had to justify myself hmm it made a lovely ceremony somewhat irksome really. Ho hum.
I am not on MN really anymore but if it's ok with you can I drop in now and then? sorry for all your losses

cafecito Wed 05-Dec-12 22:53:53

AND to make matters worse, it was the first time I saw the remember book, and they had her name wrong, her DOB wrong, and they lost the photo I sent in. It made me a little sad. But I know that's SO petty because really, it's great they do it at all.. I then just left and went back to denying any of it ever happened

cafecito Wed 05-Dec-12 22:54:48

Hope Finn gets better soon smile I was terrified when DC2 was ill

whiteandyelloworchid Thu 06-Dec-12 10:06:55

hi everyone, i'm all wound up and stressed out todaysad full of a cold with no sleep last night and getting really stressed hearing about poor kate middleton non stop.
just posted this in chat.

when i had hyperemesis and had 4 pluses for ketones in my urine, should i really have been rehydrated in hospital rather than just given cyclizine and sent home

when i had ds, started off as a twin pg, lost one tein in the first trimester, didnt actually bleed the baby just died in the womb, then my son the remaining twin, died shortly after he was born due to his heart not developing properly, and it was not fixable.

the pm results showed no signs of chromosone abnormailities and no other problems on my son.
no tests where done on his twin, but they did find his twin in the placenta

anyway, my question is this, when i had dd i had hyperemesis, and when i was pg with the twins it was much worse,yes i understand its double the hgc, even waking int he night vomiting in bed, started at 6 weeks, went to the dr and had 4 pluses of keatones, that dr said you have two choices to either go into hospital or take the medication

i said id rather go into hospital

then the dr talked me round saying well you dont want to do that because being in hospital is a risk in itself and you could get an infection etc etc
i think you would be better off at home with dioralote and medication

so i let the dr change my mind, which i still feel sad and bad about
of course it took alot longer for me to improve at home tahn it would have done if i was put on a drip a rehydrated quick

and i can't help thinking of i wasn't so ill for so long this maybe wouldnt have happend, i wouldnt have lost my son.
it could not have been good for him

anyway what i really want to know is did this gp act really poorly under the circumstances ? should i have been sent to the hospital?

just hearing all this about kate, and she has my sympathy, its stressing me out, as its like being ina train crash, then hearing abour train crashes on the news every 15 mins, i normally have the radio on when i'm doing chores etc, but i can't as its really stressing me out hearing about it all the time

its basically i thinking about making a complaint about this gp, and i don't know if thats fair or not.
and i don't know if she acted irresponsabily

sorry i'm all in a whirl today, think i'm goign to go to the gym and go mad, and see if that camls me somehow

sorry fothe mad rant

fuck my life is so fucking stressful nowsad

mias mummy i hope finn is improving how is he today?

chipmonkey Thu 06-Dec-12 23:38:16

white <<HUGS>>>

Sylvie-Rose was a twin too, originally. I lost her twin at 7 weeks.
I was so very sick on that pregnancy. I had always been sick when pregnant but never, ever as bad as this. And I have often wondered if it made her so tiny, so delicate that she slipped away.

But white, it's actually not that. At the end of the day, at her PM, we were told that her death was........Bad Luck. Something that could have gone one way or the other and it went the way we so didn't want.
And it was the same with babyorchid. Nothing anyone did or didn't do caused him to die.

And he lived a life of love, he never knew anything but love. Heartbreaking for you but what a lovely life for him xx

whiteandyelloworchid Fri 07-Dec-12 15:16:30

thanksfor the hug chip, i needed that, iwas freaking out big time yesterday, but i actually feel reasonably ok today
its a nightmare not knowing how i'm going ot be from one day to the next

dh said the same to me yesterday

sorry for flipping out like that

thansk for the kind words chip xxx
i'm sorry you lost sylvie roses' twin too

My5boysandme Fri 07-Dec-12 15:54:39

Went for my daily visit to Dexters grave and his headstone is up. So happy but very sad at the same time. I cried for ages and had to get Dh home to see it. So very pleased with it, and glad its up for Christmas. Will try and put a picture on my profile later, when I'm on the computer xx

matildawormwood Fri 07-Dec-12 22:30:58

Hello all, glad to hear you are feeling a bit calmer today white. I too feel very up and down, though mostly down it has to be said!

Hello rosduk I'm so sorry for the loss of your beloved Thomas. These early days are so very hard.

I've been having a bit of a rubbish time of it recently. I don't want to descend into self-pity but I can't help feeling that I'm owed just a morsel of good luck after all that's happened but it doesn't work like that does it? It just seems like everything that can go wrong does, like my luck literally ran out when D died and that it's all downhill from now.

I don't feel like I'm living, I feel like I'm 'enduring'. I hate it when friends or family ring up and ask cheerily "What have you been up to today" or "have you started your xmas shopping yet?" and I just feel like saying, "What do you THINK I'm up to?" I'm dragging myself out of bed and through the day because I have a DD and because I have to but in no other way am I living an ordinary life that I can just chat about on the phone. So now I hardly ever pick the phone up when it rings because I can't bear to do small talk and the alternative, being honest about how shit I feel and sobbing incoherently down the phone, is not that appealing either. I feel so tired and so alienated from my friends that I genuinely wonder how I will find the strength do keep doing this for years to come. Sorry if this brings anyone else down. I still feel sometimes like this is all a bad dream.

matilda you are not alone in those thoughts, I promise. Enduring is the exact feeling. Luck and good fortune seems so far away from our lives. Even with the safe arrival of Finn, I can never feel I am 'lucky' because Mia is not here. But that raw pain does somehow, impossibly, subside. Yet the bewilderment in the change in our lives is always there...

chipmonkey Sat 08-Dec-12 00:00:47

Myfive, we are still talking about Sylvie-Rose's headstone rather than actually having any proper plans as to when it should go up so you are doing much, much better than me.
The guys are doing their best to source the white, white granite that I want.
They say the design is fine, that people design their own but we just need to get the granite right. We could use marble but it stains more easily and needs frequent touching up.
They call fioled my "cousin in Wales" because I didn't properly explain how I knew her and I have just let it slide!

But they seem like nice guys and I have confidence in them.

Mias, I hope you are getting lots of lovely, lovely baby cuddles from your gorgeous boy! He really is a beautiful baby.

SaintVera Sat 08-Dec-12 12:13:23

matilda, I am sorry you are so low. I too have been feeling absolutely desperate and finding it harder to see people.

My main goal for the past six months has been to get out of bed each morning. For the first time, this week I have found that really really difficult. Last night, I was almost screaming with grief and voiced concerns to my DH that I won't be able to keep living like this. We were due to go out to a party with mostly strangers and I said I coudln't do it. I took 5mgs valium and knocked back a scotch, and within 15 mins, I got myself up and trotted down the road and spent the night talking bollocks to strangers. I felt much better for it.

I cannot understand these rapid mood cycles. One minute my life has ended, the next, I am functioning ok. It all feels so precarious and so dangerous.

rosduk, calfecito and white, my heart goes out to you too and too all of us struggling so badly at this time xxx

Watching 'Back to the future' - my Matts favourite film. Not sure that he ever knew exactly was going on but he used to kneel in front of the TV and watch it from beginning to end. I wish he was here now - no matter what his age - watching it and grinning from ear to ear. <<sigh>>

matildawormwood Sat 08-Dec-12 22:45:18

Well done saintvera on getting yourself to that party, even if it did take a bit of Dutch courage! You are braver than I am. I completely bottled out of going to a Christmas get-together of the local mums last night. I just didn't feel up to it but then not going just adds to this growing sense of isolation.

I'm not going to give myself a hard time about it though. If I don't feel up to socialising, I don't, and that's just how it is for now. Oddly I was able to go to sociable things like my book group and the Jubilee street party etc straight after D died but now I can't manage anything like that at all. I think I must have still been in shock at that point.

Precarious it is though. I just keep thinking that it's unsustainable feeling like this, that something must surely snap, or I'm going to get sick or lose my marbles. I just can't believe you can go on feeling this bad for so long and it not take some kind of toll on your health, mental or otherwise. My anxiety levels are through the roof at the moment.

Mias I can only try to imagine what a turbulent mix of feelings the arrival of little Finn must have unleashed. Such joy mixed with such unbearable sadness. Hope you are finding your way through these early days.

I shall try to post something positive next time I come on here. My counsellor told me I should try to write down three positive things that have happened each day before I go to sleep. Even if it's tiny things like having a nice cup of coffee. To be honest I often struggle to find more than one. Must try harder!!

Love to all xx

matildawormwood Sat 08-Dec-12 22:47:12

Shabs, I wish he was with you watching that film too x

whiteandyelloworchid Sat 08-Dec-12 23:35:15

hi everyone, well i gibbed out of going ot a kids party again today, just couldnt handle two hours small talk, last time it made me feel really really bad
so i just didnt take dd, feel a bit guilty but just couldnt do it

i totally get what you are saying matilda about, I can't bear to do small talk and the alternative, being honest about how shit I feel and sobbing incoherently down the phone, is not that appealing either
yy that is exactly how i am too
plus as well i m paraniod about people that want to know all the details and want to use me as gossip fodder, so i can get arsey/defensive if i feel people are being too nosey

peopel don't want to always hear how you actually are, plus i dont feel like saying all the time. so the only over alternative is avoiding the contact, but that makes you more isolated

mind you, you know that saying, you can be lonely in a crowd, so so true in this case, as even when your surrounded by people you feel isolated as they simply do not get you anymore
well thats how i feel about it

i just don't want to put myself through this social battering anymore
i do not want to do it

ive actually been fairly calm today, alot calmer than my freak out on thu.
and i can't stand not knowing how i will be from one day to the next

wish i could know, well next thu i will have an ok day, then i could do something i need or want to do on that day.

the bad days always come at the worse times

keep thinking is this my life now?
really really hope things get a bit easier with time

saint v
I cannot understand these rapid mood cycles. One minute my life has ended, the next, I am functioning ok. It all feels so precarious and so dangerous
oh yes i'm right here with you on that one, that is also just how i feel

whiteandyelloworchid Sat 08-Dec-12 23:38:59

shabbs yeah i wish he was there scoffing all the popcorn

fiveboys let us know when the photos are up xx

mias mummy hope everything is going well with finn xx i never realised before how i could feel so many emotions at once, and i know its amazing having finn, i guess its alot of complex emotions let alone all the hormonal side of things
hope your all ok
bet finn smells lovely doesn't he

hope your doing ok too chip?

whiteandyelloworchid Sat 08-Dec-12 23:45:54

matilda, also yy to "I hate it when friends or family ring up and ask cheerily "What have you been up to today"

i really really REALLY hatethis too, esp when just after ds died my inlaws went away on holiday abroad, didnt suggest postponing or anything
then when we were arranging funeral trying to deal with registering ds birth and death and all the formailites and hell just trying to survive by the hour, mil would send a cheery message saying how are you all, did you have a nice weekend, what are you upto?
i would reply
sorting ds funeral flowers
end of message.

fucking idiots ffs

and as times gone by, and sometimes we do have ok days, i don't feel liek telling them as i feel
if you dont want to share our pain, you don't get to share our joys in life, well jpys is a bit strong but hopefully you catch my drift

cafecito Sun 09-Dec-12 01:24:37

I find thistime of year hard because I'm expected to be happy and on duty for others and I just want to say, wtf why would I be ooking forward to christmas, it's when DD forst got ill, and my life is empty without her sad even with DS it's never going to be 'right' though I do my best because of him. I stopped doing christmas after she died, no presents for anyone, no cards. I sent some cards last year, and I might this year (!) but seriously people have no clue.

Well done for going SaintVera. Ive been pretty down recently and avoiding everything I'd usually have fun doing, but if I ever do go somewhere I feel all the better for it.

whiteand yellow- your inlaws sound ridiculous. My DD's grandparents (paternal) NEVER met her, even though htye live in London and knew she was dying in hospital. Now they invite me for dinner and interfere with DS (not helpfully, ever, just judgementally) and I sometimes think, no, you NEVER EVER MET DD I cannot believe inlaws can be such 'dhac's! MIL (we weren't married and P is now ex) she said last time I was there, when I said I was asked to write an article about DD - 'oh you should get over it, move on'.


cafecito Sun 09-Dec-12 01:25:01

apols typos am on phone

SaintVera Sun 09-Dec-12 01:47:49

white, your in-laws sound crazily insensitive. That is gobsmacking. Also, you should be able to come on here and express yourself, however low you are. cafecito, how hard to have to be around those grandparents. We all desperately need and deserve good, kind, listening folk around us.

I went to DS's school fete and cried over someone. Then I went out again tonight and cried over another poor woman. She was very nice, but I do wonder if I spoilt her evening! She did give me the low-down on the anti-depressants she is taking which was handy. I am thinking I might need to take some. Have any of you gone down the anti-depressant route for grief? I am scared they won't work and then I have no way out of the agony.

shabba I so wish your boy was right next to you watching that film xx

I pray - in a non-religious way - for some peace for all of us and an easing of our pain. And a good night's sleep xx

cafecito Sun 09-Dec-12 02:09:21

saintvera - you're up late smile (says she.. the insomniac..) antidepressants. No I wouldn't recommend them, myself. IF you're at ROCK bottom (and when aren't we after losing a child) and if you reaaally cannot cope without something extra then I guess so. Many people here will hava taken them. I took antidepressants for years (tricyclics) when I was much younger (before any of the DD stuff). But the dose kept going up and up and up and I was never confronting what was underneath it all. This is how the drug mechanism works, it's all about receptor proliferation etc so you need more and more of the same thing to get the same effect. I find them quite scary. SSRIs have been suggested and I've known many people on them. I just honestly believe GPs wil jump at prescribing but you should hold off if you can. I think your path through your loss may be harder but at least it won't be delayed in the way it could be if you have ADs.

just my opinion.

cafecito Sun 09-Dec-12 02:11:46

crying is good for you. really it is important to have space to cry sometimes. the problems come when you have no space for it and it builds and builds and builds under the surface (I went back to work in the city and ended up having a nervous breakdown in my boss's office sobbing for days- NOT GOOD) so keep talking, keep talking whenever you feel you can.

chipmonkey Sun 09-Dec-12 11:52:53

I am gobsmacked at the insensitivity of so many of the IL's on here. It's their grandchild! How can they be so dismissive?

I have not tried anti-depressants. I do tend to be the sort of person who doesn't take a paracetemol for a headache though and even after I had Sylvie-Rose and had a hysterectomy I was sent home with painkillers and never took them. Not that I wasn't in pain but I sort of forgot they were there and just put up with it.

I have often wondered if AD's would be a help, especially on the bad days but never actually sought them or tried them.

matildawormwood Mon 10-Dec-12 00:03:31

So I think I'm finally cracking up. Have spent most of the day in bed with the most terrible head-ache, just weeping and having anxiety attacks. Can't think straight and just feel like I'm in such a hole I don't know how I'll ever climb out of it. I feel like this has been building up for a while. I think this might be what they call "nervous exhaustion". If I was a celeb I'd be packed off to some expensive clinic but I guess I'll just have to muddle through.

To make matters worse my well-meaning mum, who has been a huge help in terms of helping to look after DD, told me she thinks I'm "not really there" for DD at the mo. And there was me thinking I deserved a medal for holding together some semblance of normality for her but apparently it's not enough. You know, she's probably right, DD is being difficult and it's probably because she can sense that my mind is often elsewhere, but I really didn't need to hear that today. I felt like she was telling me to "snap out of it" though she didn't use those actual words. Just "you need to think of DD now". That kind of thing. Like I have some choice over how shit I feel. Maybe I do. It's been seven months. Should I be feeling a bit better than I do?

cafecito Mon 10-Dec-12 00:15:26

It's nearly 4 years for me now matilda and I'm still 'not really there' sometimes for DS. I had him after she died, so it was always a very odd bond, very different to that with her. I think I kept him at arm's length incase he died, but now it's sort of irreperable. I feel dreadful for it, I quit my city job to study medicine, for her really, but ultimately it will benefit him as well. The driving force was always her. I write and do other things, and am heavily involved in some committees.. for her... I am not really there for him when I'm so swamped with work and exams.... not helpful post from me, but 7 months is nothing with such magnitude of loss

expatinscotland Mon 10-Dec-12 00:16:29

Hi, all! Still reading and thinking of all of you. Just having a hard time as the first Christmas approaches.

cafecito Mon 10-Dec-12 00:19:01

I guess leaving my job and having to spend time apart from DS is the main guilt with that relationship.

As for how you're feeling. Can you take a break from DD? Can your mum have her, and can you take a week out to just let yourself sink and feel whatever you need to feel?

I kept a strong brave face on it for years but finally cracked because I never took that time, never. It was 2 and a bit years after she died and I had a proper nervous breakdown (at work, of all places, not good). I now have counselling every couple of weeks, just talking for 50 mins about anything gives me the space and containment I need to be on form for the rest of the week or so. I think it's terribly important you allow yourself to cry.

cafecito Mon 10-Dec-12 00:21:19

Hi expat. Christmas is pretty hard, especially the first one. Every card without DD's name, etc. bleurgh. Do you have plans for christmas? DS will be with my family and I am working for crisis I think. I've decided that next year though, I need to set a positive happy tradition for me and him and will be going on holiday smile

expatinscotland Mon 10-Dec-12 00:25:27

cafecito, IKWYM. For the past year, I haven't really been there for DS, who turned 4 last month. Literally, in that I stayed with Aillidh for most of her time in hospital, and emotionally since she died. DD1's a little older, she's 7 today, but there are still scars.

Thankfully, we'll be going to my family abroad for a bit and I can feel comfortable leaving them and getting some real space to myself and know they'll be anything but neglected.

On 7 December, she was 5 months dead.

Her stone won't be up until February.


matildawormwood Mon 10-Dec-12 00:25:45

Thanks for your honesty cafecito. Sometimes I wonder if it's best not to look too closely at the whys or hows and just tell ourselves that we are doing the best we can in the most awful of circumstances. I tend to bury myself in work when things are tough. If I didnt have work as a distraction I think I really might go under. I wish it wasn't this way.
Hi Expat, it's terribly tough this time of year isn't it? I'm struggling too xx

expatinscotland Mon 10-Dec-12 00:28:18

Next year we'll have to stay here, cafecito, but we're thinking of starting some more alternative traditions, like volunteering or perhaps doing a yurt camp or the like.

matildawormwood Mon 10-Dec-12 00:32:44

Yes my mum has offered to have her for a bit, I should probably take up the offer. I don't feel terribly "well" mentally or emotionally at the moment. I don't mean just sad, which is how I've felt for months, I mean unable to cope really. Today is the first time I've properly felt that way and it was quite scary.
Expat I hope you'll get some respite at your family's. You've had such a long hard struggle, I hope you will get looked after - or left alone, whichever you feel would be most helpful!!. xx

cafecito Mon 10-Dec-12 00:40:10

Hmm with me there is a marked problem with my relationship with DS, if I'm being totally honest. I just was never able to bond properly. I love him to pieces but it's as if there's an invisible wall and I just can't do it. I escaped by going back from mat leave after 3 months and working full time, overtime, all the time. I then had my meltdown, eventually. I know that I'm now doing what I'm doing for DS and when he's 6 or 7 I'll be qualified and when he's going to university, I might be a consultant or whatever. So ultimately I can provide for him and be a good example. But the real drive, the real perverse reason I left sucha good job to plunge us into poverty, the real reason I do 12 hour shifts all the time and take on so much extra stuff, is DD. It's hard trying to be a good parent to both children, still. And if I'm totally honest, it's the DD related drive that wins out. (but I would never tell anyone that :D)

expat, that's pretty fast for a stone to go up. Where DD is, I was told I had to wait at least a year. I feel awful but my DGM (does that make sense) was dying shortly after DD and said she wanted to pay for a memorial for her. But because of the year rule I said no, and I couldn't accept the money as she was so ill. She made me promise to ask for it to be paid ot of the estate but that never happened (despite it being split between 2 and each party being able to buy multiple houses) so I've never put a stone up for her, still. I feel really bad. I know I'll do it one day but I can't at the moment sad

expatinscotland Mon 10-Dec-12 00:42:53

At Aillidh's cemetary you can do it anytime because the concrete plinth is in place already. Sounds awful but her lair feels sort of left out without a stone, IYKWIM.

She was my little miracle. I thought I'd never get to have children.

cafecito Mon 10-Dec-12 00:44:31

matilda yes I think you should take a break, like a week or 5 days even. it IS scary when you suddenly feel that you really, for the first time ever, cannot cope. terrifying. It's crucial you take care of yourself. I remember feeling 'wow I cannot cope anymore' and I was desperately trying to call my GP to ask to be signed off work, but they had no appointments and I was sobbing to the receptionist saying don't you realise I can't cope anymore I can't go to work like this I can't do it, I even felt really suicidal at one point- but no, no appointments.. so I went to work..error!!! If I'd had that week off, none of what ensued would have happened. You need to take care of yourself so that you are able to take care of DD

expatinscotland Mon 10-Dec-12 00:45:20

I think I might have PTSD from witnessing A go through what she went through and how she died, and now, I, too, put up invisible walls in case I lose DD2 or DS. sad

They're so so young to have suffered such a loss.

cafecito Mon 10-Dec-12 00:49:59

oh expat sad DD was my miracle because I was told I could never have children- I was very ill in my teens. I therefore suppose that having that miracle made me think 'this is why I am here' she was my raison d'etre entirely. I know what you mean about being left out. Most of the others at the children's cemetery where DD is have memorials there. I don't live near there anymore so I can't even go very often, it's a few trains and a bus and a walk, but I went about a week ago. It would be nice to not worry about it so much as at the back of my mind I always have 'the flowers must be dead by now, it must look awful, it miht have all been destroyed by the wind..' or whatever. If she had a stone there it would remove some of the subtle panic that's always silently under the surface. I take her a new toy whenever I go, because I kept her favourite toy with me instead of burying it with her, so I kind of replace it with similar ones each time, at least they don't die (but theysometimes get stolen!!)

expatinscotland Mon 10-Dec-12 00:50:19

I'm also paranoid about them and feel uncomfortable if they are out of my sight in any non-routine setting.

expatinscotland Mon 10-Dec-12 00:57:28

We go once a month, cafecito, because we don't live close to it, either. But YY, her stuff gets blown around a lot and having a stone with a kerb set and two flower parts on the sides will help that.

I clean up other childrens' graves when I'm there. blush

cafecito Mon 10-Dec-12 00:57:53

I think I had PTSD. I think it only started getting better this year, actually. I had lots of intrusive thoughts, images of her suffering. When you watch a child deteriorate and you can do nothing to stop it - I can't think of a worse trauma. I never really told anyone, my GP was useless, but it culminated like I said in me TOTALLY losing it at work.

I'm sure you've already had loads of advice and have been given this winstons wish link already

cafecito Mon 10-Dec-12 01:01:49

I was so worried about DS from time to time as he wasn't very well a few times, that I was quite sure he would die. He had some eery symptoms as a baby and the consultant told me it couldhappen again.. I'm sure that's why I shut him off in a way (to the point where he has spent a lot of time living with my family, far away - when I've had exams and had to move house repeatedly to get away from ex P) it's almost as if, if he died, it's a self protective mechanism. If I were as close to him as I were to her, and he died - then I would absolutely be jumping in front of a train (I DO NOT ADVOCATE THIS of course) so I really do have him at arm's length because there's no way I could cope again.

expatinscotland Mon 10-Dec-12 01:02:06

The last two months of her life and, in particular, her near fortnight in ICU really messed me up. She was dying and I didn't recognise it. sad

It's hard for me to remember her even at the start of her treatment, when she was relatively well, or in the last round. I just remember how she was dying and the signals she gave that she knew it and I didn't recognise it.

cafecito Mon 10-Dec-12 01:02:17

Are you having her stone engraved?

expatinscotland Mon 10-Dec-12 01:06:20

I can't abide certain things. I have a list of things I can no longer see or hear or do or smell or eat or they trigger a panic attack. I can't even read some peoples' updates on FB, people I knew from the unit, not because I don't want other peoples' kids to do well but because I think, 'Why the fuck did she die?'

I live with enormous guilt. Sometimes I feel we were so robbed and fucked over and very, very angry.

expatinscotland Mon 10-Dec-12 01:08:19

Yes, cafe.

Here Rests All That Was Mortal Of
Aillidh -
19 June 2003 - 7 July 2012
Beloved Daughter of ExpatDH and Expat
Much Loved Elder Sister of DD2 and DS
Taken by Acute Myeloid Leukaemia


And her photo in the lefthand corner of her heart-shaped stone. Matching kerb set.

It's a large cemetary and sadly, there are many children resting there.

expatinscotland Mon 10-Dec-12 01:09:40

I've been an insomniac since I was about 13 (I'm nearly 42). Needless to say, it can be extreme now.

cafecito Mon 10-Dec-12 01:24:41

likewise with the insomnia! your words are perfect, beautiful. I think having a photo is a brilliant idea, to see her sparkling eyes and beautiful face. It's something I'd like to do when I finally sort it out

cafecito Mon 10-Dec-12 01:28:30

the guilt when it's so medicalised can be really hard to deal with, I found anyway. I felt such guilt about things that I couldn't really have changed but the what ifs were all over the place, why did I sign the consent, why didn't I turn her then, why did I say that in front of her, why didn't I understand her lactate, why couldn't I stop them doing that, why wasn't I more able to get her pain relief, why this, why that, why didn't I save her.. it's probably guilt for not being a doctor that has driven me to do what I'm doing- because as a parent you're not listened to. But still the guilt is there no matter what I do, and guilt too for being alive when she isn't, it will always make me feel guilty

cafecito Mon 10-Dec-12 01:33:26

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 sad 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.

expatinscotland Mon 10-Dec-12 01:42:04

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 grin.

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.

cafecito Mon 10-Dec-12 01:51:08

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 smile )

chipmonkey Mon 10-Dec-12 12:15:19

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.

whiteandyelloworchid Mon 10-Dec-12 13:08:48

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

chipmonkey Mon 10-Dec-12 13:16:42

Hi white!smile

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.

whiteandyelloworchid Mon 10-Dec-12 13:22:42

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 thensmile

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

chipmonkey Mon 10-Dec-12 13:45:14

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!

matildawormwood Mon 10-Dec-12 21:46:35

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.

chipmonkey Mon 10-Dec-12 22:06:53

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 smile x

matildawormwood Mon 10-Dec-12 22:14:31

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!!).

whiteandyelloworchid Mon 10-Dec-12 23:16:30

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

SaintVera Mon 10-Dec-12 23:22:41

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

chipmonkey Mon 10-Dec-12 23:30:27

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.

whiteandyelloworchid Mon 10-Dec-12 23:37:32

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

chipmonkey Mon 10-Dec-12 23:48:32

Oh, I'm very simple, white!grin

whiteandyelloworchid Tue 11-Dec-12 09:23:53

no your not, your brilliant smile

SaintVera Tue 11-Dec-12 14:31:59

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

whiteandyelloworchid Tue 11-Dec-12 14:58:20

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

SaintVera Tue 11-Dec-12 15:04:34

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

whiteandyelloworchid Tue 11-Dec-12 15:34:32


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 timesad
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

SaintVera Tue 11-Dec-12 15:47:28

white, wouldn't that be lovely to meet smile 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.

whiteandyelloworchid Tue 11-Dec-12 15:55:27

yes it would be lovely smile

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 sad
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

SaintVera Tue 11-Dec-12 16:35:24

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.

My5boysandme Tue 11-Dec-12 17:09:19

Hi everyone, been lurking and reading recently.

Our child benefit and tax credits got paid for 8 weeks after Dexter died. Got a nice ish letter from the child benefit saying how sorry they were to be writing to us in these circumstances, but to let us know the child benefit would be paid for 8 weeks. The tax credits weren't so nice and just said pretty much Dexter didn't exist after such and such a date and we'd no longer get money for him. I knew we wouldn't get money but it was like a kick in the stomach that after a date he no longer existed angry

Today has been a very strange day went to the doctors feeling rubbish, turns it I have pleurisy, and I'm pregnant. Not had a period for a while, thought it was stress, mentioned it in the passing, turns out I could be a far gone as 9 weeks. I feel so guilty and scared sad

Also finally heard back from the procurator fiscal, was SIDS no ther cause. I want a cause, I don't want it to be that. I want a reason he died, I've cried all afternoon. I just want to know why and now I never will

chipmonkey Tue 11-Dec-12 20:01:03

Myfive, that's what we got too, just SIDS. It is a let-down isn't it?sad
We were told we were "unlucky" which made me want to do a big Miley Cyrus "Ya think???!!!"

And wow, congratulations on the pregnancy!grin I know you must be nervous as hell but fx that all will be fine and you will have a new little brother or sister for Dexter to watch over xxx

My5boysandme Tue 11-Dec-12 20:26:23

Thank you chip.

It does indeed feel a let down. I want an answer, I want to know why my baby. I was so scared he had suffocated and was fully expecting it to comeback saying that. She said there was 1 or 2 little things but she never said what. Will need to wait for the letter. It means we can get his belongings back too.

Hi all, so sad that there are yet more new names on here.

I'm sorry I keep dropping in and out of these threads...I keep thinking I don't need them, then it all keeps coming back to me again. I've had a bad couple of days. Raegan my almost 3 year old dd has been in hospital because she had a massive asthma attack on Friday. It was the most scary couple of days. Shes on the mend now though (thankfully) but a "friend" of mine has sent me over the edge. I posted on Fb that R was in hospital and all the details etc and she posted a pic of her 3 kids

(she has a 5yr old, 2yr old and a 2 month old <- who was due just before the boys..)

(with the caption "perfect" straight after. she was about as subtle as a brick in the small if the back. It may have been innocent but she's been really strange with me ever since Nathan and Stanley were born, she didn't go to their cremation and kind of laughs off my grief (because the boys were born at 22+2 she doesn't class them as stillborn (I do - I don't care what the law says) she classes them as something to get over because shes has had early miscarriages before and that's what they are to her....grrrr

I would cut all ties but her children and my XD get on so well and I am the elder two's godmother. So don't really know what I'm going to do...

I think I might try posting daily again. Hope you all don't mind. Thinking of you all and lighting a candle for our angel babies

x Kate x

expatinscotland Tue 11-Dec-12 20:58:20

I'd restrict her on FB and hide her.

chipmonkey Tue 11-Dec-12 21:06:01

Kate, feel free to post however often you want or need to xx

You poor thing, that must have been so scary! I'm glad Raegan is on the mend, now.

Don't feel you have to see that friend if you don't want to. What on earth was she thinking, posting a photo like that with her in-your-face caption? If you are godmother to her kids, then just send them a gift from time to time on birthdays etc. I would do it gradually, just see them a little less often, then a little less again..... If it wasn't for her kids, I'd have said, drop her like a hot potato!

That's exactly it...if it weren't for the children I would do. Its going to be a struggle not seeing them x I'm going to get Xmas out the way and lay my cards on the table, might delete fb too whilst I'm at it x thank you ladies x

chipmonkey Tue 11-Dec-12 22:43:36

Also on Facebook, you can click on a friend's name and tick "Unsubscribe".
It means you are still officially friends but you don't see every dreary update they make. I had to do this with one of dh's cousins. She really is a lovely girl and I am fond of her but God, she lives on FB and only on FB and updates every 10 seconds! I wasn't actually getting a chance to see anyone else on there!

cafecito Tue 11-Dec-12 22:59:57

Kate you really don't need a friend like that. I truly found out who my real friends were after DD died. SO many disappeared, some were just crass and hideously insensitive and clueless and hurtful. But there remained a few, firm steady few. And it's those I now class as my true friends.

My5 congratulations, I'm sure you have a whole mix of emotions right now. I had DS after DD died, (a one off!) and it was tinged with sadness and nerves. But I'm so glad I had him.

shabba my name used to begin with a c, but I had a lot of personal troubles with my relationship with ex P that was pretty abusive and violent and I just decided to disappear entirely from MN, I was then very busy with work. But a. I finally got away from exP!! hurraaah and b. I'm still me still here plodding on smile you were an absolute rock then and still are smile hope your grandson is doing well

expatinscotland Tue 11-Dec-12 23:12:19

I've unsubscribed quite a few.

And if I get one more person passing on that article on the 'breakthrough' treatment at CHOP, which was used to treat a girl with ALL, a completely different form of leukaemia from Aillidh's, I'm going to scream.

Why on Earth does anyone think I want to read that, anyhow?

Oh, here's a lovely new treatment for a cancer your daughter didn't have. Too bad she died before it, though. Um, thanks for that.

Feeling very low today. Very, very low. I'm glad I have DD2 and DS, but they are very young, and I think about having to fake it for years and years for them.

I hate this.

chipmonkey Tue 11-Dec-12 23:21:25

Expat, I saw that and I thought, I bet some idiots are going to share that on expat's wall!

Saw a child today who had been born 16 weeks early. But he's fine. I KNOW it's great that he's fine but I just wish my girl had been fine too. She looked like she was going to be fine!

I have found that as I keep pretending for the boys, eventually some of the pretending becomes real. Just some of it!

Hello all. Also reading and lurking, my words aren't flowing very easily at the moment. Very conflicted by my love for Finn, as it is also intensifying my love for Mia. Her death seems even more incomprehensible each day.

I wrote to a lovely friend about this, and she understands, as she lost her own son. Amongst the words she sent back were these, and I wanted to share them with you all, as I am thinking that they do provide some hope as we all struggle...^"And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom. " Anais Nin^

Not sure I am at that place yet, but have to hope it is in my future. And all yours too. xx

expatinscotland Tue 11-Dec-12 23:33:04

Oh, they did, chip. Look, here's a breakthrough she didn't get. Well, you know, it wouldn't have been a breakthrough for her, anyhow because she didn't have that form of leukaemia. Her form was vastly different.

YY, why not my girl? Why did she have to be the one who died? I think of the future, of faking it for my kids and going through the motions, and it depresses the living hell out of me.

cafecito Tue 11-Dec-12 23:57:27

expat you are kidding! what f*ing stupidity! I'm astounded by that. Then again, most people are ridiculously stupid in the wake of a child's death I'm sure we all have 'worst things people said' as a list in our heads. But seriously that's just so thoughtless- sad

cafecito Wed 12-Dec-12 00:02:01

I feel like I have to go through the motions of faking happiness for DS, it's depressing. He is a joy to be around, he really is. But wow it's such relief when he's not with me because I don't have to have that happy face on. I'm just going to parent hm honestly, when he's older. I'll just be honest with him. I bought a photo frame (a big heart shape with loads of picture spaces) for DD's pictures but I'e put DS's in there as well. I want him to grow up knowing her as his sister. I don't want to screw him up though, but I want to be honest that he had a big sister and I love her and miss her very much. Children are so perceptive anyway.

Then again I know it's not easy doing that, my father died and I remember being a toddler and seeing my mother's reactions, her raw grief and her ensuing madness (no, actual real madness) and it was disturbing for me as a small child. I had to grow up so fast and take care of her. (didn't get any thanks, natch, and our relationship is crap) so I can see why it's hard to know how to be with children

cafecito Wed 12-Dec-12 00:06:24

do you ever get a break expat?

cafecito Wed 12-Dec-12 00:08:42

thank you for sharing that MiaAlexandrasmummy smile I think when something that awful happens to us, in essence we become stronger. Nothing will ever be as bad as what has happened, so for me anyway it has made me fearless. I think it can break you into pieces and then what is left of you is a much much stronger person.

expatinscotland Wed 12-Dec-12 00:16:55

No, I never get a break. We're in the middle of fucking nowhere, too. I get all paranoid whenever they're not with me, though.

I have to keep faking away.

I hate that she died.

expat we hate she died too. I get that life is unfair, we really don't need that particular lesson shoved so brutally in our faces. The cost should not be our children.

My5boysandme Wed 12-Dec-12 04:41:46

I can't sleep, feel so ill and my heads all over the place. I just want to be with my boy sad

I'm awake too fiveboys, sending you hugs. It's all so impossible, when the thing you want most, you can't have...

expatinscotland Wed 12-Dec-12 09:06:08

Wow, a new record for me! Didn't fall asleep till 4.20AM. Have a busy day now, though. What tends to happen is one night I'm up till the wee hours and the next I fall asleep around 11.

Anyone else go to sleep, wake up and the first thing they think is, 'X (your child's name) is still dead'?

matildawormwood Wed 12-Dec-12 09:31:24

Yes expat, me too. I tend to fall asleep ok then wake up around 4 or 5am and then I lie awake till it gets light just having wave after wave of panic, grief and disbelief. I always find those early hours the hardest. I think it's the one part of the day when nothing's being asked of me so it's when I process it. Love to all who are struggling with sleep. I'm a lifelong insomniac and it's bloody grim. Everything seems so much harder when you're not getting enough sleep. xx

expatinscotland Wed 12-Dec-12 09:33:18

Glad it's not just me!

My insomnia is characterised by not being able to get to sleep. Once I'm there, I generally stay asleep, but lately it's grown worse.

matildawormwood Wed 12-Dec-12 09:44:44

Before I had DD I would have long spells where I would lie awake all night and then drop off as the birds started singing. I would regularly go into a very demanding job on one or two hours' sleep. As soon as I had DD it was like an instant cure. I'd fall asleep as soon as my head touched the pillow (only to be woken at regular intervals by DD but that was INFINITELY preferable to being kept awake by my own demons). It was such a blessing. But now I feel insomnia creeping back into my life and it's just another one in the many hundreds of different ways that my life sucks now!! Stay strong girls. We are being tested to breaking point but we will survive and we will look back and wonder how we ever got through this but get through it we will xxx

SaintVera Wed 12-Dec-12 10:24:33

When Sean first died, a friend said to me, 'nature does not like a vacuum'. Eventually - please God - the horrific emptiness is filled with something else. I don't kid myself I will ever recover from this, but I try to believe some other sort of existence will unfold slowly over the years.

I wake up every night at around 4am and within seconds, the shockwave of Sean's death shoots through my body. I have a variety of tablets to get me back to sleep - melatonin, valium and over the counter herbal ones. I rarely take any of them, but I like to have them there, just in case. I don't find the small hours the worst - it is the daytime, when I am wide awake and fully aware.

I hope all you amazing women get through your day ok and catch up on your sleep tonight x

Morning girls xx

I have the opposite I can fall asleep on a 'chickens lip' as my DH always says. I go to sleep before my head hits the pillow. When I close my eyes it feels like I am falling into a dark hole. Then after about 4 hours I toss and turn and finally give up.


expatinscotland Wed 12-Dec-12 10:34:12

I just had two Jehovah Witnesses knock on my door and disturb my couch nap grin. They left when I told them I was a Buddhist grin.

LOL Expat. I was brought up all my life in the Mormon faith. After Gareth died we had his funeral at their church. I haven't stepped in a Mormon church since. When I told our local Jehovahs Witnesses I was a Mormon they looked at me with such sympathy that it made me laugh. They stopped coming when they realised that I can argue the Bible with them better than they can with me!!

By the way, the death of my two sons has meant I have no faith in anyones God.

chipmonkey Wed 12-Dec-12 11:16:46

My Dad was a nutcase. He used to invite the Mormons and the Jehovah's witnesses in and argue with them! He would be in the dining room with them for ages with my mum rolling her eyes in the kitchen!

He did go to Mass every Sunday but I don't think he really believed in Catholicism as such. Back then in Ireland in the seventies, people would regard you badly if you didn't go to Mass, the only valid excuse was being a Protestant and going to a different church.

But I remember once saying to him as a teenager that I thought God was like Santa Claus for grown ups and he agreed with me. But I know he believed in Spirits and an afterlife. When our neighbour died, he said, "That part of John that laughed and had a joke with us, that had to go somewhere. That wasn't just part of his body"

I agree with him and I believe I've had enough signs from him and Sylvie-Rose that they live on. I don't know if they hang out with God, though

expatinscotland Wed 12-Dec-12 14:45:49

I was brought up Catholic as well. But now, like you, shabba, I don't believe in anyone's god now, either. But it's easier to say you're Buddhist or Moonie or pagan or something to get them to go away.

I had a very naughty mate when I was at uni who invited Mormons in and then would offer them lewd sexual services after they said their schpiel.

In Denver, since it's next to Utah, they can be pretty pushy, which is annoying if you work shift patterns or nights. When I was working in hospice, I would get annoyed at being woken early on weekend mornings by them.

I went to a friend's apartment, he worked in a bar and often didn't get home from work till around 4AM, and noticed he had a pentagram sticker and an upside down rainbow triangle sticker on his front door. Now, I knew he was not gay nor did he had any sort of spiritual beliefs. I said, 'What's with this?' He told me it worked a treat for keeping Mormons and Jehovah Witnesses from waking him up.

So I tried it. Result!

cafecito Wed 12-Dec-12 14:58:02

The death of DD has made me more spiritual than before as it forced me to question my beliefs. I was never religious before but now I'm not an atheist. I feel there is a whole realm of something, and that we should be able to forge our own beliefs sometimes with reference to religious texts and ideas as a guideline for morality etc.

I have real problems sleeping at the moment. It's like I dread going to bed or going to sleep, I have quite vivid nightmares and things and I just cannpt relax I have too much to do. Not going to bed til 4 or 5 does NOT help when I have to be awake at 7-8 to be at medical school.. I've missed lots of time.

For about a year (yep, that long) every time I fell asleep and woke up I would forget DD had died. It would be a nasty realisation process every single morning.

expatinscotland Wed 12-Dec-12 15:02:13

I don't settle well, either. I can't seem to get my breath. I don't like to sleep because when I wake Aillidh will be dead still.

I'd like to think there's something else out there, given the magnitude of the universe, an afterlife, if you will. But I'm not convinced. I tried reading about NDEs but, well, these people were not dead, the dead don't come back, and most of it I found very cliche.

And as far as God in the Christian sense with which I was brought up? I don't believe in that at all anymore. Not a jot.

Expat I like the symbols on the door idea grin

We lived with our (Mormon) friends, in Utah, for 6 months in 1980/81. The Mum had a big operation and needed help with her four children - in return they gave us free room and board....we had an amazing time. I found that the Mormon community in Utah were nowhere near as pushy as they are in England. Kind of like they were born into it so its more of a way of life?

expatinscotland Wed 12-Dec-12 15:35:20

Maybe. I only went to Utah once, though I lived in Colorado for 8 years. But at the time, I was climbing a lot and I liked to smoke pot and drink beer (in my 20s, no kids) and it was all such a PITA in Utah. So though I knew people who went there to mountain bike and climb, mostly, I'd give those trips a miss grin.

ha ha ha ha ha ha ha Expat. DH bought a t-shirt when we landed in Los Angeles and were on our way to our friends....it said on it 'EAT, DRINK AND BE MERRY FOR TOMORROW YOU MAY BE IN UTAH' grin

expatinscotland Wed 12-Dec-12 17:40:37


That no coffee/caffeine thing would mean I could never be a Mormon, on top of the no booze, pot or fags (in the past).

<<hides her pint of gin and her cigs>> xx

chipmonkey Wed 12-Dec-12 20:31:28

I don't know how people survive with no coffee. I can't function without it and get a dreadful headache if I ever try.

expatinscotland Wed 12-Dec-12 21:14:08

DD2 is singing all these carols and hymns at school tomorrow. Of course, I'm going along, she's so excited.

But she did bring up God. I told her the truth: that some people believe there's one and others believe there are many. She asked if I believed in one or many. I said no. She asked, 'But there are angels.' I said, 'Some believe so.' 'But you don't?' I said no. She asked if that's why I no longer say night prayers with her. I said yes. She asked what I thought of the Bible and I said, 'Some people believe it's about God and the word of God.' She asked what I believed. I told her it's an old book with stories in it.

whiteandyelloworchid Wed 12-Dec-12 21:59:09

oh could do with a drink, i've just finished that study i was telling you about from oxford uni, about listening to parents after the death of their baby, its taken me two months to build myself upto completiing this, and has taken me two days to do
but i feel good now i've actually managed to do this, as i really wanted to be able to do this in order to hopefully help others.
i think ive done a pretty good job of making sure i don't miss anything out

cafecito Wed 12-Dec-12 22:04:25

I think my beliefs are largely b*llocks really, but here's what I believe: that there are many universes and many time continuums time is not linear etc etc. I believe that the bible was originally (in the Torah) written about true events, but that these were jazzed up a little to convey a message. The King James bible is largely rewritten for his own purposes. But the events I think did happen, well, most of them. I personally do not believe in Christianity per se. I've got a copy of the tibetan book of the dead, it's pretty interesting. I believe that we do have souls and that there is a spiritual element to all of our lives. And what I believe happens is that our soul comes to earth many times, in order to reach higher and higher states of light until we are wise enough not to come back anymore but to become part of something bigger. I therefore believe we are reincarnated (I know, crazy alert) and I think that I don't really follow any earthly religion except my own, which is something of a made up, seeking agnostic kind of thing with a dash of buddhism. I strongly believe there is 'something'. Being a medic, most of us are pure scientists and are proud atheists. But anyway, that's me smile

cafecito Wed 12-Dec-12 22:09:23

well done on the study white! did you have to answer set questions?

expat - colorado? lovely!! where are you from originally?

me + caffeine = inseperable

tbh the beliefs I hold I think were mainly formed after DD and are probably compelled by HAVING to be able to see her again. I cannot handle the concept of permanence at all. So to me, she is not dead and I will see her again. To me it feels like a lifetime away but to her it won't be very long at all. I read loads of NDE studies and child past life books (like 'old souls') at the time of her death. It was the only way I could cope with it.

Had that not happened, I doubt I'd believe in anything other than aliens

cafecito Wed 12-Dec-12 22:11:19


chipmonkey Wed 12-Dec-12 22:17:04

cafecito, that is actually very close to what I believe.

I also have this feeling that I already knew before I embarked on this life knowing what was to come. When she died, although her death was totally unexpected, I had this feeling of "Oh, that's right, this was supposed to happen"
My cousin who has a child with severe SNS says the same, that somehow she always knew.

I feel like Sylvie-Rose was on a mission and that I am part of that mission. I fucking hate this mission! But, on we must go.......

chipmonkey Wed 12-Dec-12 22:17:41

Oh, and white wine Here you go!

cafecito Wed 12-Dec-12 22:23:11

Do you know the weird thing is, I lived in Mexico when I was 15/16/17/18 (long story) and I bought these mexican hearts at the time which read chiquitita, te quiero, te extrano tanto, and one saying precious baby girl. I found them after DD died, and was like weird- because I spoke to her in spanish anyway, (I never have with DS it's just me and DD which is a shame) but they said 'little girl, I love you and miss you so much'. I'm sure it's nothing, but was weird. It was alost as if DD had this incredibly wise look in her eyes, like she knew she wouldn't be here for long.

whiteandyelloworchid Wed 12-Dec-12 23:02:49

oh thanks!<gulps it down>
well it was 24 a4 pages long, bigger than i thought it would be, there was alot of set questions, but there was alot of open questions as well
such as is there anything else you would like to tell us about your care while you were pregnant or since your baby died.
it was broken down into sections and lots of opportunities to say what helps what doesnt what you think they could do in the future, they wanted to know all about how we were treated during the pregancy, labour and after ds died.

suppose its quite good they are going it really, they say they are going to use the information breaved parents provide to make poliices and draw up care guidelines etc and hopefully to make things that bit easier for people going through this hell, so i'm really glad i actually managed it, even if it did take me quiet a while to build myself upto it, im glad ive done it

heads pounding a bit now, i shall catch up with this thread tomorrow

expatinscotland Wed 12-Dec-12 23:06:00

I'm originally from Houston, Texas, but it was far too conservative for me, so I moved to move liberal Austin to go to university. After uni, I moved to Boulder, Colorado, a bastion of liberalism wink.

From my own background (my father's mother was pure Mayan from Mexico), I was never comfortable with the idea of Christian heaven, per se. My gran was obsensibly Catholic, but she held many native beliefs, such as that one's soul goes to spirit world after death. Again, she believed in things like portals and that spirit world is just another plane of existence. She was also a lay midwife and pretty much a witch doctor, who cured her own typhoid with some concotion her sister made and wouldn't tell any Western doctors what the hell it was. She also grew and used marijuana in a variety of medicinal ways.

One of her daughters, for example, was asthmatic as a child, and when she took an attack my grandmother would shut herself the bathroom with her, fill her pipe with pot (she smoked a tobacco pipe pretty much her whole life until her death age 92) and toke until the room was filled with smoke. She also used marijuana leaves to make a tea for stomach or period cramps.

She had her own NDE when her village in Mexico was plagued by Spanish Flu in 1920. Her first husband and two-year-old perished, and as did most of the village, buried hastily in pits, and she was pretty much left on her own bar one very old woman who did not contract it and tended to those still alive. She claimed it was just delirium from the fever and dehydration, and it may have been, but her experience echoed many accounts of NDEs.

DD2 believes Aillidh was gone to the spirit world, because I couldn't handle it all after she died so my father told her of the spirit world.

expatinscotland Wed 12-Dec-12 23:06:46

Well done, white!

This was such a big thing for you! You deserve huge congratulations.

cafecito Wed 12-Dec-12 23:16:34

white, that's amazing! what a brilliant thing to do. and what a necessary thing as well, well done!! bet it was quite draining though.wow.

expat- your gran sounds incredible! maybe some of my beliefs were influenced subconsciously from my time in Mexico, ie Mayan etc rather than Catholic beliefs. I don't know.

cafecito Wed 12-Dec-12 23:18:20

I'm meant to be applying for a placement/scholarship thing with a journal but the deadline is 13th, do we think that's close of business 13th or 12am (dopey question) I haven't done anything yet instead I am here on MN grin that reminds me why I flounced before!

expatinscotland Wed 12-Dec-12 23:39:51

Close of business the 13th. Plenty of time. wink

expatinscotland Wed 12-Dec-12 23:44:56

Did you ever see that Channel 4 documentary about the Day of the Dead in Mexico? It was wild! In one village, a table was set up in basically a type of village hall adobe dwelling. It was full of candles of Catholic saints, rosaries, holy water and pictures of Jesus and the Virgin of Guadalupe and angels. But they were all in there saying that soon the portal would open and the spirits would arrive. Then the wind started blowing in a closed up room. I was like, 'Okay, I'd be freaking out right about now.' But no one was.

I think what's comforting about it all is that death isn't so final as it is in Christianity, with this permanent division between this world and 'heaven'.

cafecito Thu 13-Dec-12 00:00:33

phew! I feel so silly asking that. great I'll do the rest tomorrow (at 4am probably..)

No I didn't see a documentary (no TV, I'm strange, might google it though!) I lived in Guanajuato for a while, they have the most incredible day of the dead celebrations there. I think it's the day when the veil between the spirit world is thinnest? or is that the day before? mmm anyway I think it's truly lovely how there is no shame in celebrating the loved one, taking offerings, favourite food, etc. Nobody would do that here it would be too taboo or morbid or looked down upon in the extreme. I think it's nice to be able to remember and recognise someone in a more positive way.

expatinscotland Thu 13-Dec-12 00:10:42

It's usually at sundown on the actual day of the dead that it's believed the veil between this world and the spirit world is thinnest.

And yy, the offerings. Also very common in Eastern Asia, too.

The cemetary where Aillidh is buried is a large Catholic one. Many of the graves have kerb sets and many are decorated with ornaments and even cans or bottles of beer. It's a lively place with both very old and new graves and room for many more.

chipmonkey Thu 13-Dec-12 00:15:58

A friend of mine told me that every year at Halloween, her grandmother would lay the table with extra place settings for those who had died in the house and that she said they would be there and would be visiting. There was something about opening the door to let them in as well.

expatinscotland Thu 13-Dec-12 00:18:49

That might be an Irish thing, chip. When I worked in hospice we had two Irish nurses and if anyone died on their shift they would immediately open a window.

DH's nana was Irish and had this belief that if a locked door in a house blew open it was a spirit coming in-about, as she called it.

chipmonkey Thu 13-Dec-12 00:37:52

My Dad always told us if you heard three knocks it was spirits.

The night before he died, my sister was alone in her living room and heard three sharp knocks on the window. She was a bit freaked and didn't go to the window, which faced on to her tiny little patch of yard which was surrounded by her house and the neighbouring house on all sides, like a little courtyard. If there was someone there, they shouldn't have been there.

But when I rang to tell her he had died the following night, she wouldn't pick up the phone because she knew it would be bad news.

expatinscotland Thu 13-Dec-12 01:25:57

That's wild. When we first moved in here, I was wakened by three VERY loud knocks. On three separate occassions. Of course, no one was there. I had been taught to believe this meant something bad was going to happen.

It did.

cafecito Thu 13-Dec-12 02:46:45

Gosh. I had a weird experience with knocking too but had never known anything about it. I lived in a very old house when DD was little, it was one of the first original streets in London still standing, 3 or 400 years old. It was a little spooky sometimes because lights would just switch themselves off and I once saw a dark figure move down the hallway - freaked me out terribly!

Since moving when she was ill though I haven't had spooky things happen. But a few days before she deteriorated before her death I kept waking up at 3.33am convinced my phone was ringing, when it wasn't. It happened for a few days and then at 3.33am my phone really did ring and it was the hospital. I lived just outside the front gates at that point.

After she died there hasn't been anything much, but I was convinced I felt her tapping me in bed once (we usually co-slept when she was well- I never did with DS- and she'd cheekily tap me in the mornings) also I would hear her favorite rattle bunny toy some mornings being shaken, it would go on and on for ages (it lived in her cot)

and once DS arrived he would often chuckle and talk to something I couldn't see. was a bit weird.

Sorry if this is annoying for anyone smile we all have our foibles right, I'm just not able to sleep at all tonight!

I always hear knocking, especially in my daughters room, which is where the boy's urn is....hmmm...might try actually listening rather than putting it down to something else.
Have had another worrying day yesterday, took Raegan to the drs for a checkup and the Dr has said that she is currently deaf in one ear with cattarh (sp?), he said that it should go away (quite common in toddlers but I've never heard of cattarh of the ears) but there is the potential for permanent damage...is there anything else that could go wrong for us this year??

I always hear knocking, especially in my daughters room, which is where the boy's urn is....hmmm...might try actually listening rather than putting it down to something else.
Have had another worrying day yesterday, took Raegan to the drs for a checkup and the Dr has said that she is currently deaf in one ear with cattarh (sp?), he said that it should go away (quite common in toddlers but I've never heard of cattarh of the ears) but there is the potential for permanent damage...is there anything else that could go wrong for us this year??

chipmonkey Thu 13-Dec-12 10:52:44

Did he mean glue ear, Kate?
Three of my boys had this and ended up having a minor op to put in grommets. But the surgeon we brought ds3 to, tried putting him on antibiotics for 3 weeks before deciding on surgery because she sometimes found it worked.
We also found on ds1 and ds2 that cows milk made it worse. When we changed to goats milk it was much better.

expatinscotland Thu 13-Dec-12 11:39:09

Well, I finally got off to sleep at 3AM.

YY, hard, loud knocking. Enough to wake me. Three sharp blows, three times. And made my blood run cold.

But it was a couple of years before she actually fell ill.

Weird thing is, from the time I was expecting her and immediately following her birth, the feeling that something was desperately, drastically wrong with her clung to me. A dreadful feeling that faded as she aged, but the night she was diagnosed her consultant later commented that I was remarkably calm. I must have been half-expecting it.

Chip, we took her predominately because shes been pulling at her ears, and saying that everything is too loud (she gets ear infections over winter a lot) so we thought he'd look in her ears, see that they were red and we'd go on from there but it was different this time, if i'm remembering rightly, the dr said cattarh (and kept saying cattarh) of the ear, he said because she has a cold some of the gunk is going up into her ear canal. If he had said glue ear I would have understood (and maybe been a little less worried (no offence) as ive heard the reference before....very confusing. He also said that there was nothing that could be done about it, no anti-b's, no drops and definitely no mention of grommets...

I'm just thankful that shes still her happy little self at the moment, he said that she needs to be checked in a months time, to see whether any difference has been made....

Dunno what could or would happen after that though x

She does drink a hell of a lot of cows milk....may try her on soy for a while though x

She does drink a hell of a lot of cows milk....may try her on soy for a while though x

chipmonkey Thu 13-Dec-12 17:25:01

Mine wouldn't drink soy. I don't think it was lactose intolerance with them, as goats milk is actualy higher in lactose. My Dad reckoned it was that goats are reared more organically.

Where can you get goats milk, never looked for it before....??

chipmonkey Thu 13-Dec-12 19:07:27

We used to get it from Tesco. But we're in Ireland so not sure if the uk is the same, our brand was Glenisk.

SaintVera Thu 13-Dec-12 22:49:09

Evening ladies. Not such a good evening though.

DH and I had to collect DS's belongings from his respite home today. Everyone was lovely, said how much they loved him. We have both felt so sad all day, but I am flat and down rather than in a heightened state of emotion. I am just low and I don't know how to have a conversation with anyone.

We are looking for a rescue cat for DS. I think it will be lovely for him but I can't feel excited. I just want my son back. Nothing is enjoyable anymore. I feel scared it never will be, or it will take years and years. I take shreds of comfort in little things like taking a hot water bottle to bed, or having a nice bath. Sometimes I think I am wallowing in self-pity and I must try harder.

expatinscotland Thu 13-Dec-12 23:15:08

Oh, Saint. I feel like I'm screwing up my kids with my grief.

matildawormwood Thu 13-Dec-12 23:36:57

saint you are not wallowing, I genuinely don't think any of us are. Though like you, I do sometimes wonder if I can move myself into a different mental space by sheer effort of will. Some days it works, some days I'm just too tired and too sad and it doesn't.

expat the exact same thing is playing on my mind a lot at the moment. Every time DD acts weird or naughty or angry (and that's quite often at the moment!) I assume it's because she's messed up by all the grief around her, even though I really do try to hide it. It's a constant source of angst, another stick to beat myself with, not that I really need another one. I try to tell myself that the most damaging thing for her, far more than seeing the sadness in me, would be for her to not feel loved. I think knowing that you are loved makes up for an awful lot of other crap in childhood, at least that's what I'm telling myself!!

Expat you are not screwing the children up - please believe me you are not.

Children see everything in black or white...whilst us adults wallow around in the grey area in the middle. The area of emotions and what ifs and if onlys. Children dont see stuff like that. I wish I was a child. You are showing them that it is fine to grieve for someone you loved with all your heart. Please dont think you are hurting them in any way. In years to come they will look back and remember their sister. They will not think 'I cant believe my Mum cried that day, I cant believe there were days when she looked so tired and so worn down by everything.

Honestly, honestly, honestly my DS1 who is almost 31 does not talk like that about the impact the death of his brothers had.

Like my Matt said 'We dont wive vewy wong so evwyday we have to gwab the day by the balls and shake it.'

I hope you will all join me, tomorrow, in shaking Friday by the balls xxx

Matilda - I think that sometimes your DD (like all other children) act 'like that.' You are not screwing her up - please believe me x

expatinscotland Fri 14-Dec-12 00:19:40

I told her we were going away for Xmas so she and DS can have a good Christmas and she said, 'You can't this year because you're sad because Aillidh died.'


cafecito, did you get the application in?

Expat - I would say to her 'Yes I am very, very sad - I think we are all sad. BUT your sister would want us to try and enjoy ourselves. We have to do the best we can to honour her and if we all stay close together we can show her that we miss her but are doing our best.' xxx

expatinscotland Fri 14-Dec-12 00:52:54

Thanks, shabba. That sounds perfect. I'm going to copy that.

cafecito Fri 14-Dec-12 01:40:24

shabba as always, spot on smile yes I did get it in, expat. I actually had two but one didn't have a date I did the undated one at 4am- then fell asleep on my table in front of my computer. Awoke far too late, very stiff, and did the other one today before rushing to the hosptial and making myself late en route by posting stickers to DS (he's with my mother) and buying soup hmm that I had no time to eat as I had to run to the tube. daft

cafecito Fri 14-Dec-12 01:45:05

typos everywhere!

I saw my counsellor today, I hadn't seen her for a month. She made me feel really bad about DS. She had such a go at me when I said he didn't need me there at Christmas. Also she said he will forget me if I don't have him back full time now. I said I am finding it difficult with childcare, my placements (I work nights in A&E ffs) and financially irksome with nursery fees of over £1000 a month while student finance hasn't come through yet and I get no support from ex P. More to the point, I confessed I find it hard to be a parent to him. I was waaaay too honest. Also I must have sounded a bit bonkers, because I said I was scared t have him living in my apartment full time because I keep looking around and seeing hazards- I have a big bookcase and I'm terrified he will pull it on top of him and die, I'm worried about his window opening up, the stairs, etc etc. I am just convinced he could die sad she told me to man up and that I need to stop pushing him away, she's right, but she doesn't understand how it feels to have never really been able to bond in case he dies... so if anyone's buggered up their DCs it's certainly me!

expatinscotland Fri 14-Dec-12 01:50:18

At least it's in! smile

I really do feel like I'm fucking up my kids, especially because I was gone for pretty much the entire 8 months Aillidh was in hospital because AML protocol is so intense, she was never out but for a total of 3 weeks of that.

So they lost their mother and sister in one blow, the mother they got back is pretty much an animated corpse.

I hate going to doctors, which is odd because several of my close friends are medics, but when we get back from the US and my circadian rhythm and pineal gland are truly shot to hell, I need to see one to get a grip on this insomnia.

I've had it since I was 13, but since Aillidh fell ill (and I slept with her all but 10 of the nights she was in), it's off the hook (the minimum you got away with in there were 4-hourly obs, but plenty of times, it was all night, every night). She was a shite sleeper in there, too.

I used to be happy - loved to bake and cook and do crafts and play with the kids.

Now I want to sleep and write a bunch of tripe and smoke rollies.

expatinscotland Fri 14-Dec-12 01:54:22

I'd sack her, cafe. She was about as helpful as a knuckle sandwich.

Let me guess, she's never lost a child?

Because everything you've just written makes perfect sense to me!

Let's see: person loses child (sorry, I don't know your full background story but I gather it was a deterioting disease, like cancer). This is hugely traumatic. Person gives birth to another child still well in the grieving process and is pursuing a difficult degree course. Person is finding it hard.

Do you a) help person because that's your job or b) be lazy and tell her to man up? Option b = sack.

I'm going to basically turn my two over to my sister and mother in about a week. For three weeks.

If things go further downhill, we may have them stay with them for a while.

expatinscotland Fri 14-Dec-12 02:02:07

Did she suggest any strategies for manning up? A magic wand?

My mom's like that. I have to endure three days with her before finally going to my sister's, who will be off work (she's a teacher) and has an 18-year-old daughter home from university and a nearly 16-year-old daughter. My sister told me flat out that she's taking over the kids. Good. I need that. Haven't had a single break since Aillidh died. Not one. I told my mother to please stop preaching and regaling me with stories about people who lost their children and 'turned it around', made it 'positive'. Newsflash: there is FA positive about watching your kid die in ICU from cancer treatment.

And she hasn't even been dead 6 months. I'm still at the stage where I cry every fucking day. I'm doing better, a couple of months ago, I truly wanted to die.

cafecito Fri 14-Dec-12 02:04:43

grin I'm up all night reading irrelevant studies and plotting audits while eating my bodyweight in little packets of nuts hmm oink. I need to get a grip on my notsleeping too, not sure how to start. saying go to bed is just pointless, hey? no way I could sleep no matter how tired I really am. I was a good mum once, I did all the mummy things for a year with DD before she got ill. But DS, wow, I went back to work after 3 months maternity leave which I found a depressing torturous hell. Then I worked full time until the day before I started my course. I never saw him. I couldn't handle doing it all again with a different child. I know that's really bad sad but yeah, I also avoid other parents like the plague, even now. I know the one thing they all say is ''ooh is he your first?'' etc. AARGH I still can't answer that properly. So I just don't do mummy things at all now

expatinscotland Fri 14-Dec-12 02:13:48

I'm going to ask for low dose amitryp or low dose ad mirtzipine and if they say no then I'll just see another doc.

I avoid families with three young children. It's my trigger, because everyone sees one girl, one boy and that's it. The eldest one is a ghost no one can see but me.

expatinscotland Fri 14-Dec-12 02:15:46

Now I'm going to read Moby Dick and see if that induces sleep. With my luck, I'll probably find it engrossing this time round.

cafecito Fri 14-Dec-12 02:16:49

I was on 10 or 15 mg amitryptyline abot 10 years ago as I couldn't sleep at all, it didn't really do a lot for me but some people say it helps them just get off to sleep

cafecito Fri 14-Dec-12 02:19:28

amitriptyline, rather. yes any tricyclic could help with the overthinking cycle, think mirtaz would work similarly. I should have done this in pharmacology but I've done no work all semester grin maybe that would be something for me to read to send me to sleep!

SaintVera Fri 14-Dec-12 09:14:50

Morning ladies.

shabba, I will try to shake today by the balls! Or at least I will attempt to get a few things done and not crawl back to bed.

cafe I am in awe of your energy. I feel such a slug. I had to complete my nurse training many years ago, as a single parent after my DD's dad died suddenly. I barely managed and I left nursing as soon as I finished the course (to return a few years later). Your DS's normal might not be 'typical', but if he's got attachments to people as well as you, I suspect he might actually be doing fine.

shabba you are so right. I do think acknowledging the sadness to our remaining children is ok. Trying to fiind someone else - family, friends etc., - to be jolly around them at Christmas is being a good parent, rather than struggling to pretend to be cheerful ourselves all the time.

expatinscotland Fri 14-Dec-12 09:20:15

Morning, all!

My insomnia finally caved at 3 and I got a whole 5 hours!

Mine is characterised by not being able to fall asleep. Once I'm asleep, I do fine!

Gonna grab it today, shabba, have a lot to sort out.

Morning girls xx

I am shaking as we speak LOL.


chipmonkey Fri 14-Dec-12 10:20:18

cafe, your counsellor is talking a load of crap.

I know a girl who was raised by her aunts as her Dad was disabled and her Mum worked long hours. She's fine, a lovely person. I think so long as there's a loving person there, the child will be fine.

chipmonkey Fri 14-Dec-12 10:40:23

Is anyone else finding the thread is not showing up on Threads I'm On or in the main Bereavement topic? Or have I hidden it by mistake?

cafecito Fri 14-Dec-12 14:46:35

Oh dear my insomnia is not good, I went to bed at 7am. This is very bad because I overslept dreadfully and missed what I was meant to do this morning!

I am a bit sick of people being judgemental, a friend on my course is always like 'so what are you getting DS for christmas?? a mum??' it's day in day out, I try to laugh it off but it's unrelenting and sometimes it just gets to me, he has no clue.

SaintVera that is no easy task! you are no slug!!

Thanks for making the point if he has attachments he's probably ok, he's certainly got his little peer group in a nursery there who he's far more attached to than his London friends, and in terms of family he has 3 people there rather than just absent me. It's possibly harder for me than him. But my counsellor was so judgey it made me feel worse. I didn;t choose to have him there, I was moving house and had to over exams and had nobody to help with him and had to put him out of harm's way when crazy ex was threatening us

expatinscotland Fri 14-Dec-12 15:35:41

It doesn't help that you often work nights, either, cafecito. I agree with chip. I have a mate whose daughter has had to live in another country with my mate's sister and family as she undergoes cancer treatment. The girl is fine, seriously, she is!

Get rid of the counsellor. You don't need judgey people in life. Person on course, I'd be truthful, 'Look, I know I have problems bonding with DS because of DD's death, but I love him and I'm trying to do what's best for all of us and I'm seeking help with it. When you stay stuff like that, it's really hurtful to me, even if you think it's a joke. I'd appreciate it if you didn't say stuff like that. Believe me, I'm well aware of my issues.'

Can you see someone and get some zops/zopiclone? Works for me in a real pinch but I'm out just now.

Bet if I tried to stay up all night, I couldn't do it. LOL.

SaintVera Fri 14-Dec-12 17:25:15

I've been announcing to people that DS is six months dead. Today, a friend pointed out that it is five months since DS died. How did I manage to confuse that?!! It seems insane. I am struggling with concentration and memory, even more than I usually struggle.

I did try to grab Friday by the balls and started well. I am now a slug, trying to kick myself off this computer. I find Facebook a bugger for time-sapping. All these things add to my sense of purposeless now DS has died.

Rosduk Fri 14-Dec-12 18:36:07

Remembering Thomas, born 23/11/12 by emcs and fought for 2 hours before slipping away. We miss you baby boy x

cafe echoing all the others here - your counsellor is total rubbish. Ignore her.

rosduk remembering Thomas with you. xx

saintvera it feels like eternity, so one month here or there really doesn't matter. And you definitely are no slug!!

chip sorry darling, think it is you wink... all totally visible here

shabba love Matty's words of wisdom. Still believe that you could write a a best-seller on Matty-isms!

expat I have realised that Mia will be invisible to most people too. I hate that, it makes me furious.

Received a lovely little Rainbow quilt from the magical Knotty today for Finn, and a little something from our gorgeous robin-loving friend... both made me cry. Finn is sleeping in his rocker at the moment, making the cutest little squeaky hum as he breathes - aaah.

Also went to the hospital with MrMia today, to discuss their response to the Rule 43 requirement from the coroner, which is due next week. They have been very open about the work which has been done, and what is yet to do, and see the contact with us and other bereaved families as integral to future improvements. Encouraging.

cafecito Fri 14-Dec-12 22:49:26

expat for some reason I didn't see your posts last night after rollies ine. No she has never lost a child. No she didn't give me any strategies, she never does. I only go because she's at the hospital, and I was advised to see someone by occ health more than a year ago because I was quite underweight- had a lot of stress leaving my job- so I started going to see her. I like it because it's the first time I've had any space to talk about stuff. But she obviously has no experience in dealing with child death.

Thanks for making me feel less awful. Everyone tells me I'm such a bad parent and all I've done is try and do what's best for DS which was to give him a stable environment for a while. She really had a go at me about when I would have him back and all the damage I will have done to him by now sad

SaintVera Fri 14-Dec-12 23:20:22

rosduk, I am thinking about your darling Thomas
Mias, extra special gifts, evidently much deserved and made with love for a much-loved boy. What a roller coaster of emotions you must be going through.
cafe I hope you can get beyond this sticking point with the counsellor if it has been useful on the whole. Without being rude, perhaps she should do some research into bereaved parents and the catastrophic effects of losing a child.

cafecito Fri 14-Dec-12 23:51:36

rosduk thinking of you and Thomas x

SaintVera, I see her for about 50 mins maybe once a month, maybe once every two weeks or sometimes every week. She's usually good but doesn't really pass comment. I just blurb at her and then leave! She never is on this point though, I cried about DD about a month ago and she was staggered! I guess she helped me realise why I feel so guilty about her death, by looking at other stuff I feel guilty about (lots of other deaths as it happens, none of which were my fault) but she did then tell me I have a ''god complex'' and I should stop trying to save everyone with the emergency med that I do. I also related what happened when a man died on my train, I did CPR but he died in the summer and I told her I was feeling very bad that I didn't do 'the thump' before CPR and instead of saying 'er that's fine' as tbh it's not taught, she just said 'well you'll never make a mistake again will you' medical schools eh :p

chipmonkey Sat 15-Dec-12 01:04:49

cafecito, this woman is not geared to helping you, she really isn't! Why on earth was she flabbergasted that you burst into tears about dd's death? ffs, I'm fairly sure that even before I lost Sylvie-Rose, it wouldn't have surprised me at all, if bereaved Mum had done that.

You need someone who specialises in bereavement.

Right, I have obviously pressed the hide button on this thread by mistake! I am going to ask how to reverse it because I'd into Fort Knox more easily than this thread as it is at the moment.

expatinscotland Sat 15-Dec-12 01:05:33

Oh, well, shit, cafecito. I have the equivalent in a first in English from University of Texas at Austin. I'll be 42 in 2 months. So here's my 'counselling', as a bereaved parent. You put that boy where he is loved and cared for. You tell him that, too, and be plain. 'Mama loves you very much, DS (insert name). Remember how I told you about DD? It's okay if you don't.' Then wait. 'Well, DD died, and now Mama is trying to make a new life for you and me, as a doctor, that's why she has to work like this. So for a while you're going to stay with . . . It's because Mama is on her own otherwise and it doesn't mean Mama doesn't love you. It's that Mama has some work for you and her.'

And really, just be plain.

My DS just turned 4 last month, and he's seen an ed psych and that's what she said to do.

She asked a lot about how we spoke to DD2, newly 7, about Aillidh's death.

Now DD2 saw Aillidh on her birthday, 19 June, and Aillidh was already dying. She was on 10 friggin' ltr of O and psuedomonas migrated from her gut through vomitting and HMV had migrated from her throat, both diagnosed via bronchoscope and later again through bronchoscope after ventillation.

As I said, previously, I have two very good friends who are medics and one is a neurosurgeon and one is a trauma doc in Denver who works in the Level I trauma centre there. You have to say they died.

That's what I did with her. She asked where her sister was, and when we'd be going to hospital to see her, and I sat her down and said, 'Remember how you say Aillidh and she was very sick?' She nodded. I said, 'She had two lung infections,' and showed her where our lungs are and explained how they work, and asked her if she understood. She did, because we'd read of fish, and how they have gills. I said, 'A lung infection is known as pneumonia. Can you say pneumonia?' And she repeated it back to me. I said, 'Pneumonia is very serious. And people die of pneumonia. Aillidh died of pneumonia.'

Oh, how her face fell. But apparently, this was the best way to try to put it. Not 'slipped away' 'fell asleep' or what have you. The person died.

Now I don't know how old your DS is, but it appears he is of nursery age and the ed psych has said it's best to be plain with a child that age.

'You're going to stay with Gran/Auntie/Friend for a bit while Mum studies to be a doctor. You will be looked after by Grand/Auntie/Friend but Mum will be around and if you want to you can ring me. Mum loves you, but Mum needs to become a doctor for you and her.'

And well, blunt instrument (no wonder Aillidh's consultant loves me grin)

chipmonkey Sat 15-Dec-12 01:06:30

Rosduk, remembering beautiful Thomas xx

expatinscotland Sat 15-Dec-12 01:20:35

SACK, cafe. Hell, we're doing a better job!

Hell, there was a junior, she was in her 30s and had two children, when Aillidh first came onto the unit, who was better and not even a counsellor. Who took time to converse, about how she'd changed as a doctor, after she had her children.

That climbing mate of mine, that Level I trauma doc, he and his wife had first a son, who was born at 28 weeks and he didn't make it, and he has more empathy than this counsellor.

How to man up and deal? I'd say first, explain as I did previously, to your son and then get him with those family attachments. Or friends. Explain, 'This is NOT your fault. I'm going to be a doctor for both of us.'

Then see someone and get that insomnia under control. See more than one if you have to.

Do what you can, with your son. Tell naysayers and haters you don't appreciate their comments.

And find a new counsellor, call Compassionte Friends hotline, always answere by a bereaved parent. Get counsellors who specialise in bereavement.

And keep talking. If I were closer or won the lottery I'd take your son on and you, too. But for now that's how it is.

expatinscotland Sat 15-Dec-12 01:22:08

Rosduk, your Thomas is added to the litany I say every Saturday night, the night my daughter died, to remember those we've lost and to speak their names.

Know, know, that someone says all their names.

cafecito Sat 15-Dec-12 01:36:06

grin expat, thank you. You're absolutely right and thank you for understanding and not thinking I'm a dreadful person <looks over shoulder for next person who tells her she's being a bad mother> DS is very bright I need to have a proper honest talk with him. He's nearly 3. Unfortunately my mother is unstable and hates me, but with him they are, in the main part, fine. It's not ideal because she's really not good with children so I am under a lot of pressure to have him with me 24/7. He also pleads with me to be in London, which has been really hard. He also asks for his dad a bit (can't really explain that one to him, bless him. sorry but I left your father as he was an alcoholic who beat me up and who left you in the middle of a busy road, unstrapped in your pushchair, in the path of a lorry while he stormed off and then blamed me in case you had died)- long story, that. The other person who could help, my aunt, who I get on really well with, cannot because she is very busy with work (though she has a DS the same age). Hopefully I can undo any damage of being with my family confused I don't think it's too late, it was necessary, for sure. I will just be honest with him

expatinscotland Sat 15-Dec-12 01:59:29

I'd lay it on thick, too, tbh, with any GP I see. I think a lot of us have PTSD.

I saw a professor our consultant called before Aillidh had her transplant. I travelled to Edinburgh to see him. I wore my suit and when he came in I said, 'Thank you so much, Professor Wallace, for meeting me. My name is Expatinscotland,' and held out my hand. He said, 'I'm only Hamish.' Then he took me to his room, alone. I swivelled my head, for it was a while before I saw her consultant alone, and only after she found out I'd sought audience elsewhere for I despise being sat before a bunch of strangers brought to sit in case I behave like a criminal, which I never did.

He said, 'I am an academic here, and (A's consultant) told me you have a level head. I went to school with her, you know, when you were 5 years old.' I am 42 in two months. I turned 5 in 1976.

Oh, did I sit down when he invited me! After saying he'd read all Aillidh's notes he asked, 'How many days did Aillidh spend in hospital.' I answered, '134.' He asked, 'How many in strict or source isolation?' I answered, '127.' 'How many did you spend there?' 124. He gaped. Alone? Yes. 'Dear god, I'd have been sectioned.'

expatinscotland Sat 15-Dec-12 02:07:53

Oh, I understand. If they're okay with him so they are. I'm far from there, but would take him on in a minute, with my own son who is 4 and my daughter who is 7 and wise beyond her years.

It's someone who loves him.

You know what's a dreadful parent? It's a parent who just doesn't give a fat rat's arse. It's someone who wouldn't be up in the night, ruminating about her child and what damage might come of her doing a degree, she or he just wouldn't give a toss or even think to do so. The thought wouldn't even cross his or her mind.

So right there, you're not shit.

I had to forgive myself a lot here. Aillidh's illness, oh, it put me in a bad way. I was there, for nearly every second of it, and at best we got away with 4 hourly obs.

I was sleep deprived and, apart from a friend, alone, as my husband had to stay with our two and Aillidh was much in strict iso, such is the protocol for AML (t 6, 9; mutated FLT 3 - oh, just Google FLT3 AML/paediatric AML FLT 3 and you'll just get a ton of bad news).

I just did the best I could and that's what we all do.

Anyone who says you don't love your son can get knotted because I said, if you didn't, you wouldn't care at all.

cafecito Sat 15-Dec-12 02:22:19

wow to that professor! smile and wow to you. I know what you mean, spending every single day unrelentingly with a deteriorating child and having little ups and huge crashing downs and watching them suffer is just utterly torturous. It's often not acknowledged by the medical profession, They do their shifts, their hours, their ward rounds, their meetings they go home. They often don't stop to think, this parent has been here for weeks, has not been home, can barely leave the ward without worrying, can barely shower, can barely sleep. It is just an awful thing to go through, and then to lose your child at the end of such a torturous journey makes it all the more traumatic.

thanks for that point though expat, I do worry and ruminate rather a lot. I'm in my mid twenties I could be out partying if I didn't care, making the most of child free evenings, but I'm usually at the gym or antigravity yoga and then at home working or MNing grin I'm SO cool. I hate going out. I just like time to work and worry a bit

expatinscotland Sat 15-Dec-12 02:23:03

FWIW, after that 134 days in hospital, she was re-admitted 1 May 2012. I spent every day and night from then. She went into ICU 26 June 2012. Then I called her father, who sent our two children to Edinburgh and did after that first night, which GiraffesCantDance did, as I was beyond exhausted. By then, Aillidh had taken the following post-transplant: typhilitis, mucositis, sinusitis, blepharitis, human metapneuovirus, psuedomonas (these two ultimately killed her), GVHD, potassium to 7.2, potassium to 1.9.

I sat for every single one of these, and I can't tell you, how much it fucked me up. On top of the fact of dealing with three consultants in PICU whom, well, I'm pretty hard, I'll admit that. But some cold part of me hopes that maybe they meet with another brick wall, preferably at high speed, because, well, I've known and even seen people die, climbing, including Brian Hermelee, age 23, who bled to death in front of us, and can't imagine being how they are.

cafecito Sat 15-Dec-12 02:24:48

DD spent much of her time in iso too because she had transplants so she was on heavy immunosuppression. AML is awful- just a side question, but did Aillidh understand her illness? sad so unfair

cafecito Sat 15-Dec-12 02:27:34

what were the consultants like? arrogant clueless insensitive twunts? I'd really like to specialise as a consultant paediatric intensivist one day, I think, but I hope to have none of those qualities

cafecito Sat 15-Dec-12 02:30:00

I'm good with empathy, of course, but I have become TOTALLY hardened to death already. I just don't flinch at all now if a patient dies. I am like a robot. I think it's something that can happen in medical professionals who encounter lots of death but it should never ever be a feature in paeds, they should be sensitive at all times and also should maintain and open dialogue with you as the parent - there's that duty of candour thing in the pipeline- but yeah I worry actually that I'm going to be a cold stony heartless dr.

cafecito Sat 15-Dec-12 02:32:45

the absence of sadness talks about how it's common to become 'dehumanised' <gulp> it's already happened with me

cafecito Sat 15-Dec-12 02:35:44

try again - I thin I might do the unthinkable and attempt to go to bed [!] I'm aiming for spinning torture in the morning (been comfort eating of late, backside has doubled in size) - wish me luck! I'm going to read some pharmacology receptor mechanism stuff that should send me to sleep really quickly

expatinscotland Sat 15-Dec-12 02:50:19

Hamish Wallace, *cafecito, that's his name. He's a father of three and grandfather and, like A's consultant, why retire? He's at the top of his game, as she is. Professor Brenda Gibson, that was Aillidh's consultant. Oh, when Aillidh was dying, I went to get her, as that Richard was on in PICU.

Have you gone through pneumothoraxes yet? They are quite distinct. You can touch your patient's skin and it feels springy and crinkly. The respiratory docs will tell you it feels like bubble wrap, but you can feel it before that, up above the sternum. It is crinkly. You don't need to listen to their chest. If the patient is on CPAP or BiPAP it might be surgical emphysema, if they are vented it's a sign of much worse.

And never, EVER understimate the parent who has been with his or her child through long-term illness of any sort or cancer. I can assure you, they know. They just do, and are likely far more educated than all but a consultant like Brenda Gibson about their child's condition.

Anyhow, Richard wanted to have a little discussion, before she threw the pneumothorax, about how piss poor her condition was, as if I didn't already know, being obviously stupider than all are to him.

Let's just say I was already known for being less than entertaining of all but three consultants in there at that point, and that I'd already heard very poorly concealed (I have worked in the legal field for 20 years, really, these people need to develop some discretion) discussion of my loyalty and that of others, to Professor Gibson. Oh, well, no shit. Who makes the final call? The lead consultant.

Already had it with a junior. Aillidh was written up for Ribovirin, courtesy of her cons and the cons there, that David person up from Birmingham, whatever god there is then god rot him. The S-whatever came in, to converse with the nurse, about how it how to be written on cardex. Nurse was balking. Silly junior was waffling. I said, 'What are you, Patricia? You have orders! I can tell you where they came from because all your little rumours are true, I'm her bitch and always have been and always will be. Do you want me to get the two of them? Or her? Or (her close associate)? I'll have the nurses in Schehallion page them. You are a doctor. You have your orders. Don't be stupid or I'll get them. Your boss ordered it, you make her do it or here is some rope.'

I felt that pneumothorax myself.

I went down to see Brenda and told her I felt it and that Aillidh was going to die, but that I had one wish and that it was that she did not die on Richard's watch.

So she did not.

Don't stop being a doctor, cafecito. But remember your DD and remember you, and be a very good one.

Don't be afraid. Don't listen to people who say you are fucking up your son, either.

expatinscotland Sat 15-Dec-12 03:03:36

'what were the consultants like? arrogant clueless insensitive twunts? '

No, not the Hamish Wallaces, Christopher Kidstons and Brenda Gibsons of this world.

AMAZING people, able to be consultants AND human beings.

Aillidh did not understand the gravity of her form of AML. She presented with two genetic mutations, and if you get the chance and do your haemo rotation, google them. The first was t 6;9. The second is far more damning and rarer in children, presenting in only 12% of paediatric AMLs and, if you're interested in genetics, a real palaver, for it outwits all chemo known to treat AML: it is a mutated FLT3.

Aillidh had the worldwide protocol for induction chemo in AML. It is called ADE. Atoposide, Daunarubicin, Etoposide. It made her bone marrow go from 60-3% AML. This, as you know, is morphological remission. Guess what? The fucking FLT3 mutation was still there.

It was knocked out with FLAG-Ida (fludarabine (aka AIDS in a bottle), atoposide, GSCF, high dose cytarabine, idarubacin), and then it was a race to keep her in remission, for many such AMLs relapse quickly.

And let me tell you, it's the ultimate puzzle for any geneticist.

Her FLT3 was held in check by a drug called Sorafanib, made by Bayer, orginally produced to treat kidney cancer. It is an inhibitor. But it, like high-dose cytarbine, is known from clinicals not to hold too long.

What is needed is targeted gene therapy. There are two drugs, one is being designed by Novartis and another through a grant from CRUK, to target the FLT3 mutation, the most common in adult AML. The two previous to these failed at stage III.

People have sent me news, of B-cell ALL's treated in clinicals with a manipulated form of HIV. All I can say is that little to no progress has been made in the past 30 years on A's form of cancer.

And that she was harvested, 500mL, of bone marrow fluid, cancer-free, and this was donated to medical research.

Her only legacy. You put that shit in a petri dish and it will almost instantly show you a very aggressive form of AML.

It doesn't make her any less dead.

cafecito Sat 15-Dec-12 03:07:29

I found that all the doctors just view parents as idiots. I gave a talk recently at a patient safety day for junior doctors. I said that parents know what they ar talking about and that they must not make such sweeping generalisations that anyone except a clinician is an ignoramus. I'm working with a safety forum that's launching a speak up campaign next year but I fully believe there shold be somethig for relatives, carers, parents as well as HCPs. The parents of a child are the ones who know something is wrong and often know more about the medical condition than the doctors do and they can be overruled and ignored time and time again (as I was) and if they weren't, things could be picked up sooner and deaths could be prevented.

DD was on cpap, bipap, ventilation and then before she died she was on an oscillator.

I've not done pneumothorax in my syllabus but outside of med school I have done it in emergency medicine, I had to decompress a man's tension pneumothorax and a haemothorax, but those are the main ones in the kind of trauma accidents I deal with. But I did not know that about the sternum and what it feels like.

expatinscotland Sat 15-Dec-12 03:11:25

I just hope that that harvest can come to some good, and I made a mistake, the A in that acronym at Ara-C, cytarabine, not Atoposide, there is no such thing. The FLAG-Ida is such a high dose of cytarbine that the patient has to have eye drops, every two hours, for days after the round has finished.

expatinscotland Sat 15-Dec-12 03:14:32

And I made a mistake. Ara-C, the A in the acromyn, is the chemo drug cytarabine. During FLAG-Ida, the drug is at a dosage such that the patient has to have eye drops every two hours, even for a week after the round has finished.

cafecito Sat 15-Dec-12 03:14:40

It's inspiring to hear there are good consultants out there. Tbh DD's neuro cons was excellent. The only one who was genuinely frank and honest with me. She sent me a card after DD died. And one consultant in PICU was wonderful but only did nights and was only greta because she realised I understood, and also she had a child the exact same age. The rest of them though were hopeless. I hope I can be a good doctor one day. It will take years (another reason I'm told I'm a bad parent and 'selfish' for leaving a well paid job with stability and pensions and a nice corner office) but I think it's the right thing to do under the circumstances. None of them will ever understand because they've never been through what we have.

I would be interested to look into the FLT3 mutation - do you know which centres are studying it?

(clearly my sleeping is not happening!)

cafecito Sat 15-Dec-12 03:18:34

I'm sure it will help, expat. I don't know where half of DD's organs are. I think various livers have been turned into slides and they retained all of her brain at GOSH hmm I doubt much can come of it, it seems goulish to me because it would only be a bit of a freak show looking at all the damage they did (!) but with Aillidh they have a real cell sample there that can be cultured and worked with for a long long time. I'm sure her legacy will be to help many, many patients in the future. I really believe that, not that it makes any of it any better at all in fact it makes it all the more unfair in a way.

expatinscotland Sat 15-Dec-12 03:27:15

FWIW, cafe, the haemothoax as you know is very acute, and associated with tumbling sats. Aillidh threw one, two days before she died, during physio.

But the pneumothorax in the oscillating vent is more insidious. It is usually a bi-product of ventillation and respiratory failure. You can feel it in the patient, though, on touch around the sternum. It's the same feel, crinkly. The ICU docs will show you oedema, spreading down from the sternum into the thorax and even the arms.

It is a very bad way to die, according to my trauma doc and neurosurgeon friends. There is only one solution for it, and that, of course, is the turn down or off the vent, and if the patient is already in kidney or other organ failure, it's game over.

But leave it and what will happen is first the patient's heart rate will increase rapidly with the air pressure on the organ. Despite sedation, the patient will waken, in much distress as the pressure increases on his or her vital organs. But he or she will still die.

A pneumothorax in an oscillating vented patient means the lungs have failed. The cause of death is what hers was: respiratory failure.

(i) respiratory failure
(ii) intersititial pneumonia/pneumonitis
(iii) acute myeloid leukaemia

As the trauma doc, my friend, said, don't let your oscillating vent patient die of pneumothorax! It's not pretty.

cafecito Sat 15-Dec-12 03:38:28

oh gosh expat I didn't know any of that- I certainly won't forget it now. how dreadful sad

expatinscotland Sat 15-Dec-12 03:43:36

Oh, there are some brilliant consultants out there. Professor Brenda Gibson is certainly one. She holds great sway among many, even in America, for many. She is a pioneer, a mentor particularly to female medics, whom she works hard, and always open, to contact with new medics and a propent of women in medicine. A professor now, she cannot be forced to retire. Good thing! When I, an American, sought second opinion from my home hospital of MD Anderson, as my sister knew the lead consultant's head nurse from when they were at university and my sister tutored her in Spanish, that lead consultant did what she could, researched as she could, there is only one trial for AMLs, and it is for those who have relapsed after standard protocol. And believe me, this haemotologist at MD Anderson is brilliant, a graduate of Harvard, but she herself is in awe of Professor Gibson, and her dedication to research and her interest in the genetics of leukaemia, particularly AML.

She is truly an inspiration as a doctor.

Because of her reputation and respect, as I said, my daughter was dying.

I went to her, and told her my child, I think she has a pneumothorax. I understand, she will die. But I do not want her to die under Richard L((((((( watch.

She just said, 'Then whom to you want?' I said, 'I would prefer Christopher Kidston or Andrew McMillan.' She took out a phone. I said, 'I shall stand outside your room.' She called me back in and grabbed her pass. It still read, 'Dr . . . ' I quipped, 'You should really get that changed, Professor.' And when she said, 'And you should stop calling me professor, forename expat, ' Well, let's go and see her off, shall we?

Believe me, though we all must die, there are worse ways to do it than what my Aillidh met. And they happen everyday.

And where is my calling? cafecitos is in being a doctor. Probably a very good one.

Just do it. Go ALL the way! All the way. The boy, with family, he'll be fine.

Sack 'em, cafe, sack the naysayers. You're in your twenties but I'm not here to patronise you. You just don't need this shit.

cafecito Sun 16-Dec-12 03:35:26

thank you expat. smile it's inspiring that there are people out there who still have a semblance of greatness about them.

I'm here at 3.30am wide awake eating yogurt hmm attepting to learn a month's anatomy in one night while downloading random jazz from itunes hmm

need to sort my sleeping out!

My aunt sent me an email today (this is rare) because I sent her one saying I was missing my grandparents, who raised me as their own and who both died in the past couple of years, and I know my aunt is upset about this also. she attached a picture of DD at the christmas she got ill, in 2008, when we were at my grandparents house. She looks so pretty sad I'm a bit scared I can't love DS enough, nothing will ever come close to how I feel about DD and the loss of her is just so profound sometimes. Seeing her little face, ouchy

hope everyone's weekends are going as well as can be