Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

In my experience (not of losing a child) it was bitterly lonely and isolating being bereaved. Others less close were saddened by it of course but it didn't dominate their every waking or sleeping thought, like it did mine. (Understandably, not their loss).

If I had been on social media and felt I could ease my loneliness by creating a space to be heard about my loss, validation and sympathy, I can imagine I might have spent a lot of time reaching out on SM.

CY and CG have created a much much bigger stage to do this on than most people do, so it's much more exposing when they do this, from the external perspective. But it's not hard to understand why bereaved people might want to.

Not saying it's a long term helpful action for anyone but just think it's not uncommon especially in the worst most raw stages. SM may facilitate the need to talk and talk about the loss. And it's there 24/7, which often other people to talk to are not.

At that point you may not be in a good state to be considering what the long term down-sides of creating an online conversation may be, vs having a private chat with someone understanding IRL- which may not be available to you anyway.

I see both sides of social media. When life gets hard for me, I completely disappear from SM (except MN, but only to post on threads about other things, not about me. It's a small distraction). When life gets hard for a relative of mine, FB posting becomes prolific, several posts per day. I guess it is their way of feeling a connection with the world.

Another one here with a very ill baby who was inappropriately-behaved.

When DS was born very prematurely, I didn't see him as he was so ill. When they wheeled me to see him, in a hospital corridor, I didn't even ask how he was. I just said "he's so tiny".

When we didn't know if he would make it through the night, I couldn't face picking up the phone to call overnight. I just couldn't do it.

I never cried in NICU. Not once. I'm a HCP & went in to work mode.

They must have thought I was an emotionless, hard-hearted ice queen.

I think it was all denial on my part & trying to put on a brace front.

To those of you who have lost babies, my heart goes out to you

Just realised one bit of that post might have been iffy WRT fertility. Was unintentional. Let me know if it's not ok pls I will re write it .

A few gems on the CA fb page this morning as always!

I agree that in a modern world people might take comfort from sm. Don't get me wrong it seems the norm nowadays. But to me it is a sad indication that we truly have lost that ' human' touch. How can sm ever replace a hug from a loving family member? How can sm ever replace the physical act of talking to another person, be it family, friend or stranger? How can sm replace the touch, the inflection when you speak, the look in your eyes, your gestures, your presence by the side of someone who needs comfort and is grieving?. Just how can sm give you compassion and empathy, something you can really feel deep inside you? How can sm give you love? The answer us it cannot. It never will, no matter what the norm is, no matter people seem to live their whole life through it. You just cannot replace that human touch. IMO sm is the most inhumane thing man has ever invented.

More, yes people jump to conclusions. I've always thought if I were accused of murder they would think I was builty as I would not brak down. Everyone depends on me in the family and I am a kind of rock. Just because we all react in different ways does not mean we are wrong or hiding something. My mother always remembererd our baby sister who died and we all made sure she was mentioned at my parents' funerals and her name is on both our parents' grave stones along with us which was something we particularly wanted.

The Gard case was not wrongly brought. Parents should have a big role to play in deciding treatment of a child praticularly if they are not asking the state to pay. That boy who was taken abroad after chemo as his parents support chemo but not radiotherapy is doing fine. He has not died of cancer because of an absence of radiotherapy www.thesun.co.uk/news/2859927/ashya-king-cancer-free-and-back-at-school-after-proton-beam-therapy-brain-tumour-treatment-row-with-nhs/

I don't think there is any formula for grief or a right way or wrong way to do things... you just find a way to survive and to push through it.

When my dd died I had to deactivate my social media accounts for a while as I genuinely couldn't handle it. But, that's just me and the way I coped. I had to shut myself off from life for a while. I think Connie is a fighter and, while I may not agree with the way things have gone, I can't help but admire her tenacity and perseverance - she is being who she is.

I have found this week so triggering too - so upsetting but at the same time I can't manage to look away and I have appreciated these threads. My thoughts and prayers are with Connie, Chris and lovely Charlie - it's a tough road to walk.

In these situations there is no appropriate way to behave. Those of you who feel your reactions to your children's situations were inappropriate - stop beating yourself up. As long as you didn't start doing anything wildly illegal your reaction was your way of coping and no one can tell you it was wrong

Very very different but I was given an unexpected diagnosis of cancer a few years ago and I cracked a joke to the medical student in the room saying I bet he wished he'd picked a different patient that day. It's s coping mechanism.

moreprosecco I experienced huge family fallout from my not grieving in a socially acceptable way. Ten years later it turns out I may have aspergers and we all express things differently. Who can say they wouldn't lost the plot compeltely or shut down into robot mode. I spent the next 2 years living in a caravan in complete isolation and walking my dog miles out into the countryside with no maps, I'd just set out and try to walk to 2 or 3 villages and home. I didn't know now to be emotionally supported so I took myself away. It didn't go down well with those who wanted to make a show of themselves being supportive on SM. I did not follow the script. But I'm still here now on my own terms. Minus Facebook and most of the birth family and all the better for it.

Venusflytwat that was a horrible thing to say to me. Stop being so nasty to others to justify your opinion.

Really nasty.

*Yesterday 23:43 Venusflytwat

I've been on many of these threads but for fuck's sake, stop following the poor woman round the internet tonight. And stop with jovially linking other threads. Have even a tiny bit of respect ffs

In fact, how bloody dare you judge me like that.

I agree that we all cope with grief differently. When my baby was cremated, his ashes were sprinkled over the memorial gardens of our local crematorium. I really regret not keeping them, but was in no state to make any decisions. I went there everyday for months, sat talking to him and heinously dragging my 2 yr old dd with me when she wasn't at nursery. She thought her brother was in a garden, hiding from us . I deeply regret that behaviour now, it wasn't fair on her at all. Bit by bit, though, it started meaning less to be there and by the time it was a few years on, we never went at all and I now have the bronze plaque we'd put there in his name in our lounge.

I am very concerned that even now, CY seems to be active on SM but that's her choice and for her to deal with in later years.
There is no right or wrong way to grieve, and frankly had anyone told me that I was being unfair to my DD dragging her round a cemetery every day, I'd not have heard them. Grief can be very insular, it's like the rest of you zones out for your own protection. It's a very lonely and unforgiving place to be in and life can be so very cruel

JayneEyre70 I was obsessed with the grave for about 2 weeks, talking to the baby then I planted some snowdrop bulbs on the grave, left town and never went back. I never put up a gravestone. It seemed pointless.
I have a large memorial tattoo over my heart and chest but the true memorial to my daughter is that I did sue the NHS, was awarded fairly significant compensation which was paid out the day before my DS was born. I bought a smallholding and built a modest home on it so my living children have a lifestyle that we could never have dreamed of had their older sister not died. It is bittersweet indeed. This was a turning point in my life where I learned who was a true friend and who was an emotional vulture trying to co opt my grief for themselves and feed off the reflected attention. (Cough) CA (Cough)

Janeyre I did the same as you, I would go to the cemetery and sit for hours, I'd go in the dark with a torch and I'd always go twice a day. I was determined I would be the best mother I could be, even though she wasn't here, and for me that meant spending as much time as possible at the graveside.

I also did some terrible, terrible things in anger, mainly shouting at complete strangers, particularly mothers with children

Looking back now I can see how unstable it was but it was instinctual and primal.

I think it must be hard now for C&C to let go of a life they've lived for the last few months, a life lived over sm, gaining support and being supported. I think in giving that up it may be the final acceptance that their fight is over.

My thoughts and prayers have been with them and it's brought some tough memories back to the surface. Every time I see little Charlie in his hospital pictures I see my daughter. to all those who have lost a child.

What's the word for anthropamorphising when it relates to another person? I feel like a dick for saying that. think a lot of that happens w parents.

Dustbunny I know exactly what you mean, and I think we all do it with newborns:
"she knows her own mind that one!" etc!
For some reason I had my firstborn down as the athletic type when she was an infant (she's not she's so bookish!) you do try to seek the person you think will emergy and superimpose adult qualities and thought processes on every squirm and gurgle!

Thank you to all the posters who have shared their stories, it really emphasises how differently we all react in hugely stressful situations/bereavement and reminds us all not to judge c and c during the worse time in their lives.
I do hope they can all find some peace with all of this but suspect it will take a very long time

I hope no one thinks this is trite but today of all days, on a thread where so many have shared their pain and grief, in the hours before Charlie leaves this world (along with so many other babies, children, parents, grandparents, whose names we do not know) a quote is running through my head.

Be kind whenever possible. It is always possible. Always.

My thoughts are with C&C, all those to be bereaved or whose loss this has made slightly stark today.

I see both sides of social media. When life gets hard for me, I completely disappear from SM (except MN, but only to post on threads about other things, not about me. It's a small distraction). When life gets hard for a relative of mine, FB posting becomes prolific, several posts per day. I guess it is their way of feeling a connection with the world

I don't think it does connect you with the world. It's a way to reach out to the world but the world doesn't quite reach back…. on SM it's just nearly in reach but not quite. So "reaching out" on SM is both gratifying and unsatisfying at the same time, which is why once some people see it as their main way of connecting, nothing is enough they post constantly

I agree that everyone copes with grief differently.

My best friend lost both her daughters aged 4 and 2 yrs, 3 months apart from separate events. It was unbelievable and the hardest time to watch her go through it. The hardest funeral I've ever been too (and I include my recently deceased father in that).

My friend had to switch off life support for her second dd. She coped by having tantrums at first - she threw all the bereavement flowers into the garden in a rage after the 25th delivery of flowers. She refused counselling as she said she "didn't need a special hour/place to take about her girls".
She started running and thus really helped.

My friend is the happiest, funniest person I know. She's full of life and people drawn to her in a room. She's amazing.

She has her girls ashes in her local churchyard. She has never visited. Other family members do, but she won't go. She told me - they're not there. They're gone. I remember them all the time, everywhere. I don't need to go there. I see her point of view totally.

Wishing C&C all the peace and sympathy this weekend. I hope they find their own way.

I agree that in a modern world people might take comfort from sm. Don't get me wrong it seems the norm nowadays. But to me it is a sad indication that we truly have lost that ' human' touch. How can sm ever replace a hug from a loving family member? How can sm ever replace the physical act of talking to another person, be it family, friend or stranger? How can sm replace the touch, the inflection when you speak, the look in your eyes, your gestures, your presence by the side of someone who needs comfort and is grieving?. Just how can sm give you compassion and empathy, something you can really feel deep inside you? How can sm give you love? The answer us it cannot. It never will, no matter what the norm is, no matter people seem to live their whole life through it. You just cannot replace that human touch. IMO sm is the most inhumane thing man has ever invented

Just catching up.but above comment so true.
''emoticons were created because it can be so easy to get the wrong end of the stick

A high percentage of human communication is non verbal anyway..a glance, a slight twinkle of eye, a fleeting frown, a faint sigh, an indignant sniff..
SM cannot convey the finest nuances of human communication.

Trampire Your story above is ghastly..how do parents cope with the loss of one beloved child..never mind three. Lost for words.

After a somewhat crappy week with one thing and another - my advice is never try reporting something you saw on the internet to the correct authorities you will eventually pull your hair out

I thought you might like to share my good news (which is not to say that I do not have utter compassion for Charlie and his family) we have been allowed to become long-term foster parents to a little angel that we had been fostering short-term a little while ago. As with all things in life things and events move on and we have been waiting for the last two weeks to hear if it was going through.

I am sorry if this should appear insensitive to C&C & Charlie I do not mean it to but as someone who had to make the decision to end my own daughter's life I just wanted to show that life (and all the good parts of it) go on. C&C do not feel like that at the moment (and nor will they for a very long time) but somewhere down the road they will start to feel joy again and I have nothing but other sympathy and compassion for their pain.

Sorry, misread...'three months apart'.. apologies.

My lovely neighbour lost their wonderful son when he was an adult- [tragic accident]

Neighbour to this day loathes 'bouquets', won't have them in the house, as they remind her of the cruellest time in their lives.

They were sent a bouquet many years later by a shop as an apology, and the delivery chap was told to 'please, take them and give them to someone else'.