Charlie Gard 20

[CremeFresh]

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

I love Wilf !

A few pp have mentioned FB. People respond in many different ways and i don't think it's unusual at all to be on your phone in the PICU. In my experience It's a shocking combination of boredom and fear.

i dont know im just stating it was said

sorry dint refresh

Lougle exactly.
Leghoul There are no words. Well, only ones that would sound trite. I wish that empathy could be taught to nursing staff.

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.

Second that Venus.

I have a relative driven to the very edge of sanity and reason by the long illness and death of her child. She raged and raged and still can do ten years on. She's highly articulate and intelligent but there was no reasoning, no support, no counselling which could suppress the anger which was driven by unbearable love and utter despair. Poor, poor family.

Sorry that supposed to second Venus's post.

My heart breaks for them all. She is going to need so much care and I hope she gets it. Grief affects people is such strange and different ways.

Love to you leghoul too.

God bless you, Leghoul.

Your post, I think, has given us just a tiny glimpse into what CY is going through. Thank you for sharing that with us.

Leghoul

Leghoul I cannot imagine going through what you have experienced and this case must be so hard for you to witness.

I think the parents are suffering from literally mind-altering grief and stress at the moment, yes we should not be critical and I feel bad for raising questions about the FB posting earlier. Who knows what we would do in similar circumstances.

I had premature twins 7 years ago and they were in SCBU, the first 48 hours were awful, touch and go as the consultant said and I was a coward, sat in the bed and didn't sit by their incubators - just watched every hour on the clock ticking by and thinking 'well they haven't come and given me any bad news yet' . Maybe I was judged by the other parents or the staff who knows?

That must have been awful, Just, and I can see how one can just watch something like a clock for hours on end just waiting.

I'm completely attached to my phone. I check it night and day.
I can totally understand how CY would be checking her phone, and commenting, any down time she gets!
Just because YOU wouldn't spend time on SM doesn't make it wrong that CY would.
I work.
I parent a traumatised child.
I'm married.
I have friends.
I have hobbies.
I have ALL these things, and still manage to check, post on and update SM regularly.
If that's the way you normally operate?? Please, please don't judge CY on this.
Don't we think the woman is going through enough?

I too am attached to my phone a lot of the time yet have a family, a life, a job, friends

I don't see why CY should be slated for spending time on SM while she is also spending time with her son.

My son is asleep next to me, I'm looking down at him and I feel thankful and privileged that we are at home in bed without tubes and wires and nurses and consultants and judges and most importantly of all without the knowing that my son will soon be gone from my life which I'm sure I could not possibly bear.

I agree with the outcome and the judges decision, I have followed these threads and despaired at some of the CA FB stuff, but ultimately my heart just breaks for a young couple who are about to lose their little boy.

I will certainly not condemn them for doing what they need to do to get themselves through this most horrific time, and if that means letting things out on SM then so be it.

I can't help but feel that for CY there is a reflex action happening - a bit like muscle memory.

Whatever GOSH say she simply has to push for more/different.

I'm probably not phrasing this very well, but after all this time "fighting" I think she simply can't adjust her paradigm. This is her new normal.

It's so very, very sad to see. I really hope the move to the hospice goes some way to providing a safe and supportive environment during the last hours with their child.

I do so hope that after Charlie passes and the mob retreats that there will be people around CY and CG that can provide caring, measured post-trauma and grief care. I am very concerned about how they will cope. Those poor people. Anyone with a heart, even though we think that we would not have made the same decisions, surely must feel compassion for how desperate and desolate they must be.

Maybe this family always lived their life on SM. We don't know

I agree.
By the way the wiki summary is quite fair and very good if anyone is interested en.wikipedia.org/wiki/Charlie_Gard_case

I'm not judging Connie, not for a second, I'm desperately sad for the unnecessary pain she is putting herself through. Of course everyone reacts in their own way. I can identify with both leg and just- I made far too many bad jokes and went back to work after DS was diagnosed with cancer and as a newborn I waited for a whole morning to visit him in PICU because I was just frozen to the bed, numb.

So I'm really not judging, just so sad for her and hope she has the right support around her.

De lurked to thank everybody for these threads. I'm another one who had to make the decision to switch off life support when dd was 3 days old. Oxygen starvation at birth due to a clear cut case of medical negligence admitted by the hospital almost immediately. This has all been so triggering and the threads have been balanced and a massive comfort to check through the day that I'm not the only one. I just want to add that I barely spent any time in NICU.I simply couldn't bear it. Unlike charlie my daughter was in visible distress. I have enough medical training to know that the miracle was not coming and when the time came to make the awful decision it was a no brainer. As such I began with feelings of horror towards c and c. As this has gone along I have remembered the magnitude of the feelings and grief and I have nothing but sympathy for them. I've lit a candle for little Charlie. May he pass peacefully and I sincerely hope c and c are given whatever help they need to conceive a healthy child in future. Love to all on this thread who have lost and are feeling it all over again.

Thank you for the belated lovely comments.

I have had many difficult conversations with my sister in the six years since her baby died.

She struggles with news stories like this one. The last few weeks have been difficult, it's been all over the place.
She tried to kill herself on her son's last birthday. He would have been 5 years old. I feel her pain, I love her and we are very close. I have guilt added onto that as I have children and very easy pregnancies. We have discussed surrogacy as well as many other options but she just wants her own kid, and to be a normal parent and go through what she's seen me and pretty much all her friends go through. And tbh I just want that too. She said earlier that she got so sick of the drama of it all and why the fuck should it be like that. Everyone knowing all about it. It's been a huge physical, mental, and emotional invasion of privacy for her.
It's hard for her have a very vague small talk convo without having to answer the 'so do you have any kids' question. She always tells the truth. She is a mum and nothing will ever take that away.
I hope Connie is reading this thread. I really get the post before about dark humour and anger. We had a few of those moments too.
One thing that really touched me at the time was one silly comment from someone that made my laugh but to someone else could have been really offensive. Can't tell the story without seriously outing myself but it made me ok with feeling just a little bit sorry for myself that I lost my nephew.

I hope Connie and Laura are reading and that they feel they can come here anytime for support from everyone at MN.
I watched The Aristocrats with my kids while waiting to hear whether my nephew was operable and stood a chance of survival. Don't know if anyone's seen it but there is a whole section on very dark inappropriate humour at difficult times. It's nice to know you're not the only weirdo out there sometimes.

I love the Kahlil Gibran poem that has been quoted a few times now and listened to that twice last year at funerals for older kids that had died and it was read by their parents.

I try to remind myself every day how lucky I am, but I have lost my shit a couple of times the last few weeks because I have been angry at the effect this has all had on my sister. It's also been a bit cathartic for both of us.

Be kind whenever possible. It is always possible

Be kind to yourselves first though x