“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.
It’s hard to romanticise devotion strung out over that many hopeless, sleepless nights. Better to imagine the tragic mother holding on to the infant who still fits in her loving arms, not the son who’s now twice her size, himself edging towards middle-age and the cliff edge that comes when mummy’s no longer around.
Writing on the tragic case of Charlie Gard, the Guardian’s Giles Fraser claims that he would “rain fire on the whole world to hold my child for a day longer”. The Gard case, he argues, has “set the cool rational compassion of judicial judgement and clinical expertise against the passion of parental love”: “Which is why those who have never smelled the specific perfume of Charlie’s neck, those who have never held him tight or wept and prayed over his welfare, are deemed better placed to determine how he is to live and die.”
This may be true. It may also be true that right now, countless parents who have smelled their own child’s specific perfume, held them tightly, wept for them, loved them beyond all measure, are wishing only for that child’s suffering to end. What of their love? What of their reluctance to set the world aflame for one day more? And what of their need for a life of their own, away from the fantasies of those who’ll passionately defend a parent’s right to keep their child alive but won’t be there at 5am, night after night, cleaning out feeding tubes and mopping up shit?
Parental – in particular, maternal – devotion is seen as an endlessly renewable resource. A real parent never gets tired of loving. A real parent never wonders whether actually, all things considered, it might have caused less suffering for a child never to have been born at all. Such thoughts are impermissible, not least because they’re dangerous. Everyone’s life matters. Nonetheless, there are parents who have these thoughts, not because they don’t love their children, but because they do.
Reporting on the Gard case reminds me of the sanitised image we have of what constitutes the life of a parent of a sick child. It’s impossible not to feel enormous compassion for Charlie’s parents. As the mother of a toddler, I know that in a similar situation I’d have been torn apart. It’s not difficult to look at photos of Charlie and imagine one’s own child in his place. All babies are small and helpless; all babies cry out to be held.
But attitudes change as children get older. In the case of my own family, I noticed a real dropping away of support for my parents and disabled brother as the latter moved into adulthood. There were people who briefly picked him up as a kind of project and then, upon realising that there would be no schmaltzy ending to the story, dropped him again. Love and compassion don’t conquer all, patience runs out and dignity is clearly best respected from a distance.
All too often, the everyday misery of care work is hidden behind abstract arguments over who gets the right to decide whether an individual lives or dies. I don’t know any parents who truly want that right. Not only would it be morally untenable, it’s also a misrepresentation of what their struggles really are and mean.
What many parents who remain lifelong carers need is adequate respite support, a space in which to talk honestly, and the recognition that actually, sometimes loving is a grim and hopeless pursuit. Those who romanticise parental love – who, like Fraser, wallow in heroic portrayals of “battling, devoted parents” – do nothing to alleviate the suffering of those whose love mingles with resentment, exhaustion and sheer loneliness.
There are parents out there who, just occasionally, would be willing to set the world on fire to have a day’s respite from loving. But regardless of whether your child lives or dies, love never ends.