trouble | It's almost like losing a child (Reply)

I would like you to go read Ivan Cameron and the Meaning of His Life right now, because it is beautiful and wonderful and says so many things that I wish I could. And also because it is full of pain and despair.

It is very long. Here's a few excerpts:

It is true that the British public had, through officially released family photographs and Cameron’s own very open comments, known more about Ivan than would be normal for a young child of a political figure. Yet if the Tory leader’s exposure of his son was part of a campaign, it was a campaign about something much more important than politics. The message was that he and his wife were not ashamed or embarrassed to have a child with such profound disabilities - and, by extension, neither should anyone else be, in the same situation.

This is so true for me. I talk about Don as much as I do, way more than other people think is normal, to remind people that PWD exist and take up space and deserve to be here and are loved. A lot of people have told me over the past 12 months that they've been affected by this, have started to look around their homes and sort out if Don could come visit (often, no) or started revising their internal opinions of wheelchairs. I can understand why Ivan Cameron's father made so much about his son's life public, for the same reasons I have been relentlessly cheerful about Don's wheelchair in public spaces. I have the energy for this fight, and I think it's my responsibility to wage it.

But here's the part that I think will break your heart, as it did mine:

Nine-year-old Daisy entered hospital in 2005 with a tooth infection, which turned septic. The hospital failed to supply the most basic medical care, giving Daisy neither food nor liquid in sufficient quantities. When she began gasping for breath the hospital told the parents that she would be transferred to intensive care, but this never happened.
It turned out that this was not an accident, but deliberate, and an official report on the case is being prepared by the ombudsman. As Daisy’s mother, Amanda Healy, told me: “The staff later admitted to us that they had ‘misjudged her quality of life’.” In other words, they had acted under the belief that Daisy - who loved and was loved by her parents and who, in Amanda’s words, “adored just waking up in the morning” - had a life not worth living and therefore not worth fighting to preserve.
One member of the hospital’s staff had said to Amanda, when she complained about Daisy’s lack of treatment: “People like you should realise that children like these are going to die sooner or later.” The remark that most shocked Amanda came from a doctor who was actually trying to be sympathetic, after Daisy had eventually died of a pulmonary haemorrhage: “It must be awful; it’s almost like losing a child.” It was the charity Mencap that put me in touch with Amanda Healy: hers is one of a number of similar cases involving what it calls “death by indifference” that it is pursuing on behalf of the bereaved parents.

"It's almost like losing a child."

My broken heart, my broken heart.