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

[fioled]

For my beautiful baby Anabelle Violet, loved and missed to the moon and back, always xxx How hard we wish that you were here baby girl.

Twinkle twinkle little star,
Up above the world so high,
Like a diamond in the sky.

For all our babies and children, big and small xx

Oh expat (()) I know those kind of programmes are very useful for raising awareness & funds, but it's so hard listening to stories of 'battles' & 'bravery' (I didn't see it, btw, but they always seem to focus on this). I always want to shout: "You know what, some children die - just like that. And no matter how brave or battling they or we were, nothing could have changed that! And some children will always die, no matter what. And it's awful! But it doesn't make us, who remain, saints, or martyrs, or anything less than you. And I don't want to be pitied! I am so lucky to have known my child in this life." Rant over :) Hope you're feeling ok today.

Mias I am sending you gentleness for this weekend

Morning girls xx

Your words ring true in my head Expat. xx

Thank you, shabba! It's not a battle. It's an awful disease, with very, very low survival rates for the type of cancer Aillidh had and the genetic mutations within that. And it's not a matter of being brave or being a 'survivor', it's a fecking lottery! It's a toss up. Do we say that about people who lived or died from Spanish Flu? No. Or people who die waiting for an organ transplant?

And you can try to "Stand up to Cancer" but sometimes cancer is like an army tank. You can stand there and face it and not budge but it'll still flatten you.

Yes, the whole 'stand up to it'! But if you die no one wants to know. There are many cancers, particularly those affecting the brain, which are completely inoperable and untreatable. There are plenty of cancers that, if they relapse, there is no treatment. In the world. You can 'battle' all you won't, these cancers will kill you.

My friends lost their 19-month-old son, their only child that took them years to conceive, to DIPG/Pontine's Glioma, which is inoperable and untreatable. In over 30 years there has been no progress in treating this cancer.

Oh, but it's 'rare'. So are commercial plane crashes, but that doesn't mean tons of research monies aren't poured into stopping those. Bet it doesn't feel so 'rare' to all those who lost their loved ones in such accidents.

There's a good book out about the whole 'be positive' when it comes to cancer, called 'Smile or Die'. When I get stronger I plan to read it.

expat (((hugs))). I didn't see the Channel 4 night, but can't imagine how hard it must have been xx

Sorry to keep popping in with no regularity. I have no idea why I'm doing it, when you ladies have given me the strength to keep going.

I've not been well the last week. I had a cold & felt quite bad at the memorial service.

Was too ill to take DD1 to toddler group on Monday. Did take her out on Tuesday, dosed up, but then felt really rubbish on Wednesday. Had to get an emergency doctor appointment on Friday - had an infection, and had to be nebulised as my asthma was really bad.

Am now on a high dose of steroids, and antibiotics, but still feel so ill.

It's DS's 21st birthday tomorrow, so had a small tea party for him today, and now just want to collapse. I'm so angry about it.

When my nan died, I got ill when we cleared out her house. It was a cold, my asthma got bad, I was in hospital for a week. I'm sure it was grief (of course the doctors didn't agree).

With the fact that was today was the last time I saw Tamsin alive - exactly a year ago - I can't help but think it's related. No one else is ill.

I don't mean it's psychosomatic - more that I did have a cold, but my immune system is just not working. I've been avoiding planning anything to do with Tamsin's birthday - thinking there was plenty of time - now I'm ill. I'm not sure it's coincidental, I just wish I could muster up the strength (emotional as well as physical) to fight this off, and honour Tamsin appropriately. My stupid shitty body - let her down so catastrophically a year ago - and now making it hard to mark her birthday :(

hi all, just up and down still, think thtas my normal mode now
when people ask me how i am thats what i tend to say, up and down, not sure if its a ok reply or not, but its all i have really

tami, what would you like to do to mark the day, or would you prefer to let the day pass while tucked up in bed, theres no law that says we must do certain things on such days
perhaps being tucked in bed would be the right thing for you? what do you think?

expat, i can see how that woudl be so so upsetting, i just dont understand why people are liek this about cancer, yet nothng else, they don't say if you don't battle against this xyz it will beat you, so i just don't get why people say it about cancer.
i wonder maybe it makes people think they can somehow control it.
ie people thinking cancer wont kill me as i wont let it, type thinking
rather thans realsing it all boils down to luck

i find it really really upsetting and i can see how thos would make anyone touched by cancer really really angry

mias, i think you have done your little girl proud, i just really wish it never came to this, but i hope that your bravery in taking this action, will save many other children in the future.
sorry im not good with words and i can express what i mean or feel well, other than to say, i think youve done your very best, ypuve done really well, and i wish you love and strength

chip hows the counselling going are you finding it helpful at all?

i just feel this feeling of being robbed

Tamisara, you in no way failed Tamsin! You loved, loved, loved that child. You can honour her very simply. It doesn't have to be organised to be proper.

I'm ill now myself with a cold that only minorly affected DS and DD2 not at all.

Just find it hard to muster joy in anything.

Hi Ladies

Sorry I have not been here but I have been lurking and my thoughts and love are with you all xxx

Hiya Lavandes - good to see you....I have missed you xxx

expat you made me cry (in a good way) xxxx I do still love her. I just can't bear to even look at her photos at the moment, it feels like a little stab inside. I think I need to cry, to let it out, but I keep swallowing it down. Thank you. I hope you get better soon. I guess that trying to keep going, is so wearing mentally, and takes so much energy, that your immune system gets shot to bits. xx

white I have no idea what I'm going to do yet. Lying in bed is not really right, not for me (DD1 would no way allow it either). I hope to get round to doing some things this week. Your answer is spot on btw. There is no right or wrong really, but "up & down" is a really honest answer xx

Tami, of course your immune system is shot! I actually think grieving takes up a huge amount of energy. Something's gotta give!
And Tamsin won't be expecting you to do anything spectacular, all she is going to want is that you remember her and love her, which of course you do.

white, I have found the counselling helpful but only in so far that it helps me to understand that everything I'm feeling is normal. My counsellor is lovely. She's the sort of person I could happily be friends with, if she wasn't my counsellor.

Of course you feel robbed, you were robbed, love. We all were.

Sorry to hear you're not well tami - some days it's exhausting just breathing :( so it's not really surprising that a cold can knock you hard. Try to give yourself time to rest (())

I think some people have an almost desperate need to rationalise away our children's deaths. They tell themselves that they wouldn't have acted in a certain way, or allowed a certain thing to happen, or that they would have 'battled' harder. This allows them to remain in their safe little cocoon, believing that they have protected themselves from the bad things. I don't think many people do this deliberately (they're the DHACs), but I know, from sad experience, that many do so almost without realising. It's much more difficult to face the world knowing that the worst can happen at any time, for no reason, & that we need to face that world as positively as we can.

hi all, feel very low today, just wish things were so different for all of us and our lovely children.
i just feel so different now, different about everything, at the weekend i was asked to attend a fundraising thing at the preschool where my dd used to go to, shes at school now.
and i just don't want to go, because all the staff from the preschool know about me losing my son, and i just can't face them.
plus there might be other people there i haent seen in quiet awhile
i don't know it just makes me feel introverted to protectmyself, but that goes against my natural personailty, or my old personality
i only really feel comfortable around people ive known along time.
i'm weary of new people too.
say certain mums that invite you for coffee, its feels like theres alot of people that would like to know all the details what happeneded when how why etc
and alot of other people who would rather pretend my son did not exist

i'm dreading the next big family event such as a wedding or christening etc as i simply do not want to see the people ive not seen for so long.
yet i worry if i avoid people now, will i make things even harder for myself in the future?

even my realtionship with seems strained at times,mainly because he will get snappy with dd, and that will cause rows between us, its just like everything has changed now

just feel daunted by the future really, i look ahead and worry how will i cope with feeling sad for the rest of my life, hopefully it will ease a bit in time, well thats what they say, yet i know i will always always feel so sad about losing my son.
and the future of living with that for the rest of my life is a very worrying prospect

and i find it difficult being so up and down,, i don't know how i'll be from one day to the next.making planning things etc difficult
i wonder why we have good and bad days, perhaps its because our minds cannot cope with the enormous grief so it washes over us in waves, to ease it somehow, yet that leaves feeling afraid of when the next big wave will hit me

sorry not sure the point in posting this, just want to get it off my chest i think

Am right here with you, white!

I do the school run and run DD1 to her activities - she's nearly 7, so it's a matter of dropping her off at the activities and collecting her, thankfully - and that's about it.

I don't leave the house otherwise except to go for messages/food shopping.

Of course, no one knows how long they have, but I try not to think too much about decade upon decade without Aillidh.

We had applied to HAs in Glasgow where she was treated, to move house in view of her treatment.

Even though we had a large number of points we didn't qualify for anything.

I got a letter from one of the HAs Saturday, asking if our circumstances changed.

Yeah, you could say that.

morning expat, oh that must have hurt gettig that letter.
circumtsances changing just sounds like a drop int he ocean doesn't it
i would feel like sayign circumstances changed?
hmm more like the whole universe has changed and everyone in it

perhaps its best i try not think think too much about the future right now, and try to ot worry about how i will cope without my son being here for the rest of my llife

just feel helpless at times, as normally when shiot things happen theres things you can do, i know its nowhere near the same, but f your unhappy in your job, marriage, home or whatever you can get a new job, get divorced, move or whatever.
yet really what can we do?
nothing much really
yeah sure we can do nice things sometimes like lighten candles, taqking flowers to our babies graves, realsing ballons or lanterens etc
thing to mark days etc
but theres nothing really we can really do to tackle this unhappiness

an i'm sick of being expected to be understanding about how other people like my inlaws are about my son too.
they try to pretend everythings ok, and its not
i like like they would be better off with cardboard cutouts of us, with little recorded messages so when thye say how are you,, the cardboard cutout reply hi we are fine thanks, in a robot style voice

{{Expat}} That letter must be a complete kick in the teeth, I'm sorry you received it.

I understand everything you say yelloworchard. I feel like you are describing me 5 years ago, when C died. You mentioned the waves of grief, and all I can say from experience is that the waves will crash in less often.

I remember in the early days, weeks and months of grief that I couldn't reconcile myself with the fact that I would be feeling that wretched for the rest of my life. Surely I couldn't last a lifetime literally feeling like an extension of me wouldn't be beside me forever? But slowly slowly that fierce and intense longing has softened. I still miss C everyday, but the longing doesn't floor me daily anymore.

white if you don't feel like going to any social event, don't go. You don't have to.
Go where you have to, to do shopping and collect dd, etc and where you want to. People should understand and if they don't, feck them!

And no, there's nothing you can do about losing your baby. If you are young and fertile you can try for another baby but even at that, it won't be the baby you lost. Honestly, all you can do is get through each day. Time doesn't heal althogether but even a year on, I can see that it does make things slowly better. Just hang in there.

Oh, expat! "Circumstances have changed". Oh, how they have changed! That letter must have been a slap in the face!

Just want to say white that every word of your post rings true to me. You're not alone. I've always been a positive sort of person. I could usually get myself out of bad feelings or situations by doing positive stuff. But that doesn't work any more. We just have to live alongside it, like some kind of chronic illness. And some days you just think you can't live with it forever. But I take hope from the posts of others further along the line who say it does ease a little. God I hope so. xx

Totally agree Ilike - it does soften...there does come a time when you can laugh and smile without feeling like you have 'left them behind.'

There isin't a 'getting over it' moment it just is a gradual acceptance. xx

Same for me too White. I have had to attend a wedding since he died, as both my boys were meant to be page boys and my older one still had to go. I avoid most people these days and only leave the house when I really have to. I take my son to school and back and take him to his activities and parties etc, but I find it all really hard. However, I am doing much more than I did in the early days, so maybe I will regain some function slowly, not sure though as at the moment don't even feel as if I want to.

I was talking to my husband the other night about my avoidance of nearly everyone, I hardly can even bring myself to see my family. While I was talking I had an epiphany! My mum died 6 years ago, and I spent all the time I could with my Dad and my sisters, and didn't feel it strange at all, because they had suffered the same loss as me, and could understand my pain. When I was having a terrible day I thought of my sisters and knew that they were struggling too, and it pushed me on. I think that the problem with the situation that I am now in, is that it hasn't happened to anyone that I know in real life. There is no one who feels the same as me about this apart from my husband, and I think deep down that is the reason I avoid people. Whoever I see I know that they haven't lost a child and I start comparing myself to them and then get myself into a right state. Even my family, who I know miss him, don't miss him on the same scale as we do, so I would prefer to not even see them, because to me they act as though nothing has happened, whereas my life is ruined.

I have had a tough few days. I went to a funeral on Friday of someone slightly younger than myself, arranged by her parents, so obviously was all geared to loosing a child, and I found myself very upset thinking about him, more upset than I was at his own funeral. Then yesterday, the church where we had the funeral did a service of remembrance for all those who have died this year. They read out all the names and we lit a candle for him. I was struck by how 'old' the names all sounded, and there didn't seem to be another young person listed, let alone a child. I was in tears before the service started, and was getting really irritated as all the people around me who were just talking and laughing as if it was just any old church service, and that made me even more upset. Ugh. They had all lost someone too, and it really brought it home to me how much I am struggling, I can't go anywhere without crying!

Anyway, that turned a bit epic, lots of love to everyone xxxx

matilda, funny, I've often thought of it as a chronic illness, maybe like Crohn's or diabetes. You can't cure it but you manage it as best you can.

twinkle, there was a service shortly after Sylvie-Rose died for all the people who had died that year. I was the only one crying that I could see but most of the others who had died were old people. My Dad was only 62 when he died unexpectedly. We were shocked and upset but I was able to move on from it a lot better. Probably because at the back of my head was the thought that my Dad would die, one day. It hurt but at least it was normal and my Dad had had a good life. I think if I'd attended a service for him, I probably would have been fairly good humoured.

It's a totally different thing to lose a child. Your worst nightmare and one you don't ever expect to come true.

Twinkle I too am avoiding nearly everyone, even family, which is so unlike me as I used to be very sociable. I think I'm angry that they just carry on as though nothing has happened and ask me "what have you been up to today?" expecting me to make smalltalk when a lot of the time I feel like every last bit of joy has been sucked out of my life and I'm just going through the motions. I have to make such an effort to be normal and upbeat for my DD that I don't have the energy or inclination to do it for anyone else so I'm basically in hibernation. With friends, I think there's an element of "misery loves company", so anyone who seems to be too happy with their lot I'm avoiding like the plague!!! Awful but true.

thanks for understanding everyone.
it good to have a place to talk to people, who actually understand what i feel.
but i really wish none of us had to be in this situation
i think it did help getting that off my chest

i totally agree its totally differnt from when an old person dies
i have been to one sands church service and that was nice, in the sense everyone there was going through the same thing

its comforting to hear from others that know what they are talking about say, that hopefully i will find this easier to bear in time. i really hope that is true for me.
thanks for listening to me anyway

i worry alot about my dd, as i am kinda dreading christmas aswell, but i shall do my best to make it really nice for her
and i worry about the effect all this will have on her, but guess i can only try and support her and be as open and honest as possible