So my wife is still going with my daughter to a grief support group. Kids do their time upstairs, parents downstairs in a moderated session of their own. I can't hack it.
A new family showed up. Never a fun time. They share what they can, when they feel like it. They lost their infant at less than one year, to a form of spinal muscular atrophy, similar to ALS. The muscles waste away. Eventually the child has to be put on a ventilator, where they could languish for years before dying. There is no cure.
Once the disease has progressed to a certain point, the subject of how long the parents want to keep the ventilator on is approached. We've had similar discussions in the past about Carter. It kills you to even discuss it.
This set of parents, after a time, consented to the removal of the ventilator. I can understand their position that life on a ventilator, unable to move, is not a life. I can't say I would have taken a different position.
It so happens there was another family in the children's hospital with a child in similar condition. The families were aware of one another, but they didn't speak much. The chilling thing was after the decision was made, the mother of this other child approached the deciding family and offered, "You know you're going to hell, right?"
This stuff just eats at me. There are so many stories of what people say to the parents of dead or medically fragile children, but that's up there, coming from someone who you would think would understand.