The hugely supportive thread in memory of all our twinkling little stars, bobbing sunflowers and dancing butterflies supporting those bereaved by the loss of a child

[peterpansmum]

In memory of our gorgeous Gregor

Stuck, yes I do have scales (argh) I mean, I know he is doing really well he was on the 75th centile when I did get him weighed and he's growing fast. I just can't face it at the moment. The neighbour really wanted someone to talk to about having a new baby (emphasis on new baby, not a baby, and thus it's difficult to pretend L didn't exist), and though she's nice I can't face that every day (she said every day, as she's only next door) it's a bit too much. Maybe once a week!! I'm so awfully antisocial but tbh I have spent my whole life pleasing other people (I know this sounds really selfish) but after losing L I have changed, I just don't care anymore, I don't really care if I come across as aloof or if I don't return calls or send birthday gifts or do what others may want, it all seems so insignificant. I may do what you suggest and jump on the scales with him just to get a rough idea, thanks.

LF I'm glad you had a reasonable day, with no spotty strippers in sight

ppm Wow! Lots of shared experiences... We're so very niche and yet here we are chatting on t'internet. Would it be very wrong of me to be delighted to encounter you?

Did you by any chance get written up in an SUDC newsletter? I recall reading about a family from Scotland whose little boy died, and thinking that it was a very similar chain of events as for us when H died.

She was four and a bit - well outside the age range for SIDS. I'm so grateful we found SUDC - they kept me going when it seemed impossible that you could not know what caused your child to die just like that, our of nowhere. Also there were plenty of other families amongst them who had been through the bereavement really close to the birth of another child - it made me feel less of a freak for being pregnant at that time.

Our coroner's office have made some changes now in how they process and deliver news of COD for children. We had a community paediatrician assigned to us who was absolutely marvellous; she helped us draft letters of protest and suggestions for change.

Hiya Zeno, hee hee totally not wrong to be delighted

I do know of the wee boy you're thinking of but that wasn't us. If you're on facebook you can read about what happened on a group called 'walk for gregor' - we did a fundraising walk in his memory just after his first anniversary and have raised over £10k so far and there's still some sponsor money to come in!

Morning girls xx

i congratulated myself on coping reasonablyh well with the run up to Frasers b/day this year

pity it didnt last....

I am falling apart .. nightmares about the day I lost him, inability to cope during the day

In fact I burst into tears at my work yesterday.. first time ever

I thought this was supposed to get easier as time goes on ..6 years and I am still falling apart

I want to hide from the world ..I really do... I dont want to act like I am coping cos I am not

Oh FM I still get days when I feel like that - I lost my Gareth 28 years ago and my Matt 18 years ago...and, still, every now and then it bites my arse so hard that it hurts me physically and emotionally....keep posting darling...we are all here for you xxxx

FM , I was the same as you at about the same stage . I was 5 1/2 yrs down this crappy road before I felt the need to look at compassionate friends . I really did fall apart . I think for me it was because I had had my two other boys by then and then youngest was over a yr old that I felt able to go back to Harry again . I fell apart but with lots of talking and lots of support from my dh I got through it .

I am so sorry you are in such a dark place , keep talking and be kind to yourself xx

FM I'm so so sorry you are feeling as you are.

I'm not feeling very helpful at the moment. sorry
I turned off the laptop and went outside (yes, outstide..) and it was horrible, I don't know why it was harder, but I associate sunny days in the park with almost every day of L's healthy life. I can't handle being here going to the same places without her, it feels like such a betrayal? It's horrible- it's almost 2 years already since L was DS's age and I keep thinking if only I could go back to then and live every single day differently, I'd be such a different mummy. I feel so guilty. I just came back with crashing waves of guilt about everything, DP said something about how you can't give up (he wasn't talking about L, he was talking about work and his disagreement with his boss) as giving up means you've lost and life is a fight, or something, and the effect that it had on me was to say I shouldn't have given up on L. I gave up on her- I didn't insist she had another liver, I didn't fight her corner for her, I accepted it and then I didn't say 'no' when they asked to remove her life support at the very end. I said OK How can a child's mother say OK, to the certain death of her child? I just feel like she was euthanased- and I was responsible. I feel like I was so selfish and maybe had she not had the brain damage at the end I'd have definitely fought her corner for her- but how could I have possibly been so selfish that her death was better than having a brain damaged child? brain damaged children smile, have lives, their lives are not worthless, they have aright to a happy life. I feel like the most selfish horrible nasty mother in the whole world I feel like I robbed her of her whole life and I am so grotesque as a parent and I wish I could go back to just one day of her life and do it all differently, even just one day, to tell her how much I loved her, and to play with her, and make her happy. I feel like I don't really deserve to be here I'm so horrible and you are all so lovely- and I don't really feel like I deserve to live if she died- I just wish I could do everything again.

SORRY FOR RANT- please ignore I just thought things would be better now the 1st anniversary has gone by but they're not, I feel worse than I have since last june or so. bleugh

hope everyone's OK xx

Hello Crumpette

So sorry to hear you are having such a terrible time at the moment.

I hear what you are saying- we agreed to remove Sophie's breathing tubes and I didn't put up a fight about it- I guess I was kind of in shock. We had had "The Chat" with the consultant about it a few days before but we weren't expecting them to propose removing her support on that day. I have been going over and over whether I should have fought for another day or another week or whatever.

I'm not sure I have really come to terms with that yet, or have any thoughts to offer. I just wanted to let you know that I know where you're coming from.

oh crumpette..

YOu have to believe me when I say you did nothing wrong

My dad always says never go back and look at a decision you made in the past .. you make the decision based on the facts, circumstances and emotions you are faced with at the time

As time goes on your circumstances can change, you may gain more facts and your emotions will change..so going back to a previous decision is never good

you didnt give up on L.. you did what was best and somewhere in the depths of your heart you know this... you maybe cant find the strength to admit it .. but you know it and you have to hold on to that thought

we have adventure ted from the nursery this weekend and I was thinking oh god thats all I need

but we went to my local shopping centre where the cadets were celebrating 150 years..

ross (and the bear) had their picture taken on the assault course, on the climbing wall, in a mocked up fighter plane, with a sea cadet and with the royal marine band.. I feel a good bit better,.. hope it lasts

and I will be able to write a decent entry in the damn bears's diary (the pressure of an exciting entry)

Sorry, I just read that back and it didn't sound very helpful. I hope its not totally useless.

I am at a different stage to you I know but that same guilt has crept into my mind. It was made clear to us that it was only a question of time, there was no option of her recovering to live any kind of "normal" life or any life at all without support. I have to trust that this is the case, and to keep her alive would have been selfish and putting my needs above hers. This is the only way I have been able to get my head around it because otherwise I keep thinking that I should have fought harder for her. What you said about that really struck a chord with me. I keep apologising to her for letting her go and hoping she can forgive me for it.

But I guess I would just have been fighting for a day longer with her, and we'd always have wanted another day, and another and another. And meanwhile she would have been ever more poorly and tired and weak. At the time it broke my heart to think of her struggling on like that for our sakes, but it breaks my heart now that we seemed to let her go so easily. We are just put into such impossible situations and its so unfair that we have to deal with things like this.

Sorry, just wanted to elaborate a bit as my first answer seemed so useless. I hope I'm not making it worse.

I hope you have a better day tomorrow. xxx

Good morning girls xx

Morning all x

Crumpette - how are you doing today? Keep talking to us if it helps to get stuff out. I can identify with things feeling worse after the first anniversary. I've felt what i can only describe as a huge emotional dip since march. I feel all at sea and i think I'm trying to work out where i go from here. And I don't have a new baby to try and cope with. My heart goes out to you. x

FM - I'm so far behind you in the time line of grief but i do know (from what others have said) that the older grief the harder it hits sometimes. It's ok for you not to cope in fact it's ok for you to do whatever you need to do to get through the days... [PPM wonders whether it be wrong for adventure ted to go on a grief adventure?!! could you imagine the reactions of some of the other parents to our 'normal'?]

Had quite a quiet weekend. Feeling exhausted at the moment. schools are back on wed here and after that i'm going to try and get some sort of routine into my non-working days. How's everyone else doing?

Sofa, FM and PPM- thank you. I'm sorry the usual waves just sort of drowned me yesterday, I was in floods of tears. I don't want to be all negative here but it's very helpful to get it out- I said to DP yesterday that I was sad and I missed L and he went ballistic and said he doesn't want to hear about it, shut up, etc etc. So I can't say it in RL ..

Sofa, thank you - I completely understand where you are coming from. It's the worst decision to make isn't it, and you're not really making it all the time you want to scream NO.
I guess I still feel immense guilt for so much- hindsight is a bit of a pain really. I had no idea she would go downhill and die, we had everything ready at home for her to come back to. Had I known, everything would have been different. My only consolation is that right at the end, they gave her a morphine bolus so she would have been euthanased comfortable. One of the PICU doctors said to me that she deserved a dignified death, without the severe pain she had lived with for the previous months, and without being attached to the machines. At the time on that day I guess I thought she'd die for sure anyway, so it wasn't a case of if but when, ie in 8 hours or tomorrow. Afterwards when I studied all her numbers etc I am not sure she would have died, actually. I feel I was misled re her BP and the level of acidosis- it wasn't a cert. And a consultant confirmed it. SO I feel I consented to her being killed but I didn't know that at the time,as FM says, I shouldn't go back to my decision. At the time it was a question of die with morphine so no pain in peace in my arms, or die potentially in great pain on an oscillating vibrator stuffed full of wires and lines. With the hindsight I now have, though, I would have asked for another transplant and made a fuss about it and I would have told them to keep going, because then I would know for sure I had done everything I could. And I don't think she was a brain damaged as it was first thought, she nearly smiled properly earlier that week and she communicated with me very well when her mobile stopped and she wanted it back on. But maybe she'd have suffered a lot more ultimately and would still have died. I just wish I had known I was going to lose her, I could not accept it as a potential outcome and so I breezed along not really spending much time with her because I thought she'd be home in the next 2-4 weeks and I'd be her 24/7 carer. She must have felt so abandoned, I didn't stay overnight or for half the day, even, because I thought she'd be OK and would be home. I really did.

Agh sorry I am rambling again, I really appreciate you lot not minding. I felt so low yesterday but a bit brighter today- went outside (aaagh) and took some flowers to her, then went to an outdoor market and got some nice random vine leaves and sweet ginger and chilli olives. om nom nom.

FM- adventure ted sounds like he had a great day out!!! well done I can imagine the pressure- does anyone just take adventure ted to asda or something, for a laugh?

I feel a bit better that after my outburst on here yesterday I emailed someone who was my 'mum' when I lived in Mexico and became one of my best friends, and I would email every week or so..and she loved getting pics of L and was going to be her godmother until L got ill and I went silent and then I closed that email account. Anyway I emailed her to explain what had happened. I can't believe it took me a whole year to pluck up the courage to do it, but it's a bit of a weight off my shoulders that she knows that L has died. I just couldn't articulate it before. I feel guilty just saying it- you know, guilty for L and also guilty that I'm going to upset her and ruin her day/week/whatever, but it had to be done. Next thing I have to do is tell people I've had another baby, most of my friends don't know and he's already 3 months old. But that can wait, yes?

Crumpette you're carrying so much unnecessary guilt around. You may feel like YOU made all of the decisions about L and that it's all your fault. But actually you made the decisions in conjunction with the doc's, consultants and surgeons, and with the information you all had at the time.

When things started to become quite bleak with C and everything started to go wrong, we were given the news about how bad things were looking, but the consultants did say that they would carry on with the next step of treatment if we wanted to. However dh and I came to the decision that we would withdraw treatment and that enough was enough.

And even though we felt like WE made the decision to stop treatment, we actually made it in conjunction with all of the health care professionals involved. It is done like this for two reasons:

If they felt we were making the wrong decision then they could have lawfully overruled us.
But also they wouldn't allow the burden of stopping treatment to be totally on our shoulders. It has to be a joint decision.

Does that make sense? I think I'm rambling a bit.

You also mentioned that you could have insisted she have another transplant. You could have insisted all you want but the surgeons obviously felt it wasn't the best option for L. So please don't feel it was your fault she didn't have another transplant.

I may sound quite clinical and matter of fact in this post, but I think that comes from knowing that we made the right decision. Immediately after C's death I felt terrible guilt about the decision we made to end his life - but in my rational moments I knew that we had made the right decision with the information we had at the time. I still have the what if's? But I think I always will.

I hope this has helped xxx

Dear Crumpette
Could you go back for a chat with one of the docs?
I hope that is not really insensitive.
I'm only suggesting it as ultimately it was the only thing that helped me (not feeling strong enough to go into circumstances, which I know were different to yours, but there were similarities, hence wondering if it might benefit you too.) Please ignore me if this is not a helpful idea.

We were assured that we made the right decision and it took away my guilt. I just wish I had not left it 3 years and had done it earlier.. would have saved so much heartache and soul-searching.

I just wanted to say this. I realise I need to enjoy where I am in life now, enjoy who and what is in my life.
I realise that what is stopping me from allowing myself to be happy is that once I come out of this baby bubble, I have to look back and confront the sadness a bit more head on.
There will always be two, even if the world on the whole, doesn't acknowledge that. I have to move forwards, holding one in my arms and one in my heart and mind. Put that way it is not too heavy a load and a step I must take.

What I struggle with, is that there is no-one in my life who actually KNOWS me from before who I can share that with. I guess that is important as this has changed me so much, and it would help me feel anchored if a pre-loss buddy could say "yes I can see what this had done to you". But I guess it's all so painful for them too, it is easier to back off, self protection.

Sorry to go on, not expecting any replies, but just wanted to let it out to make sense of it really. I guess it is like a jigsaw puzzle, if you change shape, then the pieces around you no longer fit and everyone has to change around to get a new best-fit.

wise words stuckperson wise words

I like the jigsaw analogy, it explains it really well.

Can you speak to your dp or family about how you feel you have changed?

I too feel like I have changed unequivocally and that there is no going back. But for me I think it is much more of an internal switch. I don't think my friends have noticed that there was a me then, and a very different one now. Or maybe they do but haven't said anything?

Also liking the jigsaw analogy Stuck... I have changed both on the outside and on the inside too and some friends have moulded with me and some have not and may never do so as I'm sure some of them think I'll eventually revert to the 'old' PPM.... There is no going back.

Yes, could talk to DP.
Don't know how to put in words how it has changed me.
It's a bit like having been beamed into space at such high speed that I have been rearranged at a molecular level. And landing on Earth 4 years later, and finding everything and everyone is different. Maybe shape wise I have not changed outwardly, the same as you have found ILTMIMI. I mean no-one could tell by looking.
But inside I have and in order to become unstuck I need to line up what's inside and what's outside.

Sorry am wittering on now.

Also changed on a moral level. More compassion for those in trouble. And want to change to be less tolerant of other people's messing around and taking advantage of me who don't deserve it.
This is making no sense probably as have jumped in out of nowhere on your thread but it's helping me to type so hope that's ok!

Makes a fair bit of sense to me stuck [am thinking you'll eventually change your name to unstuck person!!!] my moral changes are a wee bit opposite to yours i'm ashamed to say - i've noticed i've much less compassion for folk in a bit of trouble e.g. loads of folks moaning cos they're stuck cos of the airline closures WTF - has anybody died? arghhhh! I do know what you mean about not letting people leaning on you - i'm learning to sift out the folks that drain me and if it means losing friendships then so be it.

Agree, I was also meaning those in real difficulties (so don't feel ashamed).
I am feeling a bit unstuck already..