This is nothing really new, but I just keep thinking how terrible it's going to be for this family when her heart does stop. I guess it's possible they'll have peace that they did everything they could, but IMO the more likely scenario is that all the grief they haven't been letting themselves feel while fighting this and holding out false hope is going to come crashing down. Bad enough to lose your child, worse to keep hoping and hoping and taking extreme steps and then to have nothing at the end of it. They've replaced the grieving process with fighting to "save" her. I know that their lives will never be the same after this, but in all my experiences with loss, it's only the getting on with life that eventually allows things to get better. They haven't done that, and instead have put their whole focus on her and an impossible hope of her recovery. IMO, that's going to make the inevitable even harder to bear, and it's already such an unbelievable loss.
That's JMO, and I certainly hope it's not true and that they will just have peace when it happens. But I think it's part of why it makes me so angry that there are people continuing to fill them with hope about this instead of assisting in the grieving process.
MOO.