“Sometimes,” says the mother, “I wish we’d let him go. Or that he’d just been allowed to slip away.” The father agrees, sometimes. So too does the child, who is not a child any more.

On good days, nobody thinks this way, but not all days are good. There have been bright spots during the course of the past four decades, occasional moments of real hope, but now everyone is tired, everyone is old and the mundane work of loving takes a ferocious toll.

When we talk about caring for sick children, we usually mean minors. It’s easiest that way. That for some parents, the exhaustion and intensity of those first days with a newborn never, ever ends – that you can be in your fifties, sixties, seventies, caring for a child in their twenties, thirties, forties – is not something the rest of us want to think about.

Read the full post at the New Statesman.