Charlie Gard 20

[CremeFresh]

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

Oh Nellie that is wonderful news, so pleased for you.

To everyone else who has posted such moving stories I just don't know what to say, so traumatic and life changing. I have a friend whose DD died and she literally spent the first year after her death in the graveyard. I can so understand that, not wanting to be away from your darling DC .

We lost our daughter at home, in the bathroom, which became the focus of my grief. I got weird about letting anyone in there. The toilet broke and I wouldn't let anyone come to fix it because I felt like I had to fix it. I didn't have a clue what I was doing, if anything I just broke it more. All it needed was a new flush, a simple job to someone who knew what they were doing but I got obsessed with fixing the old one. Eventually I just lost the plot completely, came downstairs, soaked through and broke down about how I couldn't fix it, I couldn't fix any of it. In the end, I went home to my mums for a few weeks while we looked for another house. Fortunately the landlord was understanding.

Grief manifests itself in many ways. I don't judge her for doing what she's doing now, she's lashing out a world she feels has let her down. I just hope that she has a good support network around her when the time comes.

Just huge thanks to everyone who has shared their stories here .

Thinking of poor baby Charlie, and wishing for strength for his parents. I hope that they have people around them in real life to help and support them.

Grief is so hidden normally, it feels uncomfortable to read about people going through it. Thank you to everyone explaining their stories, it really helast with understanding what the family are going through.

My mother wished she had a picture of our baby sister (she lived 21 days) - it was not done in those days. There was a funeral service. There was no head stone on the grave. I think it would have helped my mother had there been a gravestone (all our family are buried and we do not go in for cremations). Anyway my mother is dead now. May be they are together at last.

Social media suits some people and not others. Parents should be allowed to express themselves how they choose, within the limits of the law.

The pro life arguments remain (not my stance). Whatever the quality of the life is withdrawal of medical treatment morally right or is it murder? Or is that just nature taking its course as you are not actively killing?

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.

This^

matthw wright stating charlies rights come first not his parents

its all over the front pages how they were denied thir wish

Thank you to everyone who has shared their stories. I might just have had a little cry.

Reading these posts has brought tears to my eyes - so much suffering. I was so lucky to have 3 gorgeous babies who have grown into three gorgeous adults and these threads have reminded me just how blessed I am.

Love and prayers for everyone who has been through something even remotely similar to what C & C are going through

I so wish that we could block other posters on here sometimes

We have to rise above it Stoprightnow

Long time lurker on all these threads. Just thought I'd post this blog by a former judge. It's his thoughts on the case.

sirhenrybrooke.me/2017/07/25/8469/#more-8469

I do hope that at some point C&C can accept counselling to help them come to terms with this awful tragedy. I wouldn't wish their suffering, or Charlie's, on any other soul. But I'm concerned that their fighty-fighty strategy, which is probably sustaining them through this foul dark time, will not help smooth their path through life afterwards. I don't know whether the counselling they initially turned down was via GOSH and they might consider seeking it from an independent body in future, but I hope that they do and that it might help.

It's truly saddening that they seem to believe that GOSH and the court have not truly had Charlie's best interests at heart all along, and if they can get past this it might help with the healing process. Otherwise it might be a festering sore on their grief that will prevent them from finding any sort of peace. Poor souls

That's really good, cow's tits.

Agree entirely re the judge. He has been amazing and I hope he has a nice holiday planned.

IMO sm is the most inhumane thing man has ever invented

On the other hand, it stopped me killing myself last summer. If you count MN as SM.

I couldn't talk to my family. Not for lack of love or availability on their part. But the ugly howls of anguish in my head scared me, and I didn't want to let them hear them. They would have been trapped in it just like me if I had told them the extent of my grief. MNers and I could drift in and out of a thread based on personal tolerances and limits being reached. It made burdening others possible. It made being burdened do-able. (I hope)

SM is a just a tool. Nothing more, nothing less. It can give one person the perfect way to dig themselves out of a deep, dark emotional hole where real life contact and pity would be counter productive at that moment. It can give others a hammer which they use to self-inflict terrible wounds, without ever realising that is what they are doing.

What is missing perhaps is the guidance in how to use it to advantage rather than the opposite. Reams and reams are written about exploiting SM for marketing and commercial gain. Not so much for staying emotionally safe on it while getting the support you need. It's all very much make it up as you go along, and hope you don't fall in one of the many bear-pits along the way.

Poor judge is probably still cradling the whiskey decanter, what a dreadful time for all involved.

That is lovely news Nellie so pleased for you.

Online so glad that you had MN when you needed it most, yes there is a bleak side but a wonderful side to being on an anonymous SM site.

Not sure that I would include The Sun's FB page in that - you have to pick where you go carefully.

That's great news Nellie. How wonderful.

Still thinking of Charlie and his family today. Peace for them and strength to get through.

The legal framework is fairly well tested as far as I know Lucysky. Withdrawal of treatment is lawful if there is harm to the patient from it, or i think absence of benefit from it, as long as the intention is not to cause death by withdrawing it. In reality most invasive treatments cause some kind of additional risk which is only made ok by a major life-sustaining benefit. An example I'm often involved with is the PEG or feeding tube via the stomach. These have significant risks and constraints of their own but can in the right circumstances be a boon. There may be good reasons to have one and equ ally good reasons to stop using one or to have it removed.

Handslike good blog post. Thank you.

Last night, walking home in the dusk from son's house, I caught sight of the beautiful crescent moon. and thought of Charlie,and all the other children who are in a similar position.
The moon's reflected light shines on us all, wherever we are in the World gives me a feeling of connectedness. Whenever I am affected by grief, it is Nature that brings the most comfort.

oakleaffy every night when I put the dog out for a last wee, I stand and look up at the stars. It gives me such comfort to think of my wee boy as one, shining down on us and there seems to be a physical connection. Wherever we are in the world, we have stars. My absolute favourite song in the world is a sky full of stars by coldplay, as to me, it makes me think of all my children and I have a paper star from one of their concerts that are blown out into the audience in my phone case. Funny what we grab onto for comfort.

nellie I'm really pleased for you, and it does highlight that light can follow from darkness
I also agree that sm can be incredibly helpful at times. I'm on a closed group on fb with parents of kids with the same diagnosis as my dc. It's been incredibly helpful to me and I've drawn a lot of support from it, from people who truly understand the situation we found ourself in. In that way it made me feel less isolated. It's a rare diagnosis but I also found someone else within 100 miles who's dc has the same condition (I think they are the only 2 in Scotland). They've both not been well recently but I'm hoping to meet with them irl at some point when things are a bit better.
I never imagined drawing any support from fb and have surprised even myself by being on it. But it really helps

So sometimes as online also said sm is a lifeline, when you find the right people

Maybe in time Connie will find the right people too. I really hope that she does

The stories shared today are truly moving, I don't have the words to express how sorry I am any of you had to go through any of it