Why I couldn't care less about being important

Alice O'Keeffe's "Squeezed Middle" column.

Here you go, babe.” Curly hands me four crisp £20 notes. I flick through them wonderingly – this is a highly unfamiliar sensation – before tucking them away in a drawer. My housekeeping money. The phrase seems like something from another age.

My decision to give up paid work – not to mention the near-nervous breakdown that preceded it – appears to have focused Curly’s mind. In just a couple of weeks, he has drummed up two Saturday jobs and has enrolled on an evening course in carpentry. I didn’t even nag him; he just did it. And now he’s done it, he seems rather pleased with himself. There is something newly brisk and confident in his bearing.

“See you later!” The boys and I wave as he heads off for the station in his smart shirt, for all the world like a family from a 1950s TV show. As the door closes, I wonder what to do with the day. Shall I make jam? Bake a cake? Knit something? The last time I tried to knit anything was in primary school and it did not end well but, all of a sudden, I wouldn’t rule it out.

I’m not sure what has happened to me. I used to be thrusting and ambitious. I used to dash around in taxis, schedule high-level meetings, take off for Brazil at a moment’s notice. I used to want to be important and influential.

At the moment, I can’t think of anything worse than being important and influential. The very idea sends a shiver down my spine. I would definitely be a big disappointment to the sisterhood, if the sisterhood were to find out what I’m up to. Only the other day, there was an article in Sunday Times Style by an important woman telling us we should all try harder to be more important. For a brief moment, I wondered if she was right. Then I threw the magazine into the bin and squidged a dirty nappy in there, too, right on top of her smug, self-righteous face.

The funny thing is, actually, I don’t give a monkey’s left ball about all that. I don’t care about anything except for being calm and happy and enjoying my life again. Once Moe is down for his morning nap, I take my copy of Delia’s Complete Cookery Course off the shelf, blow off the dust and turn to the jam section.

“Slice one kilo of fresh pink rhubarb.” Aha. Funnily enough we got rhubarb in the Abel & Cole box this week. I get it out of the fridge and rinse it off. Larry appears in the kitchen. “Mummy, I’m bored.”

“Why don’t you help me make jam?”

“Jam’s boring.” Busted. I snap Delia shut and put down the knife.

“What do you want to do, then?”

“I want to go to the pub.”

“You what?!” “That’s what Ben’s mummy does. Ben gets crisps and plays Simpsons pinball.”

I have to hand it to Larry. That suggestion is so wrong and yet . . . so right. Feeling everso- slightly furtive, I ping a quick text to Ben’s mummy and take one of the twenties back out of the drawer.

Alice O'Keeffe's "Squeezed Middle" column appears weekly in the New Statesman magazine.

Alice O'Keeffe is an award-winning journalist and former arts editor of the New Statesman. She now works as a freelance writer and looks after two young children. You can find her on Twitter as @AliceOKeeffe.

This article first appeared in the 16 September 2013 issue of the New Statesman, Syria: The deadly stalemate

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We argue over Charlie Gard, but forget those spending whole lives caring for a disabled child

The everyday misery of care work is hidden behind abstract arguments over life and death.

“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. 

Glosswitch is a feminist mother of three who works in publishing.