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Love alone won’t keep my son tethered to me. This still feels monstrous

In Ireland, invisible carers save the state €20 billion each year. When my five-year-old son, Ted, was diagnosed with leukaemia in 2022, I became one of them

Twenty-four hours and one phone call later, we are in an isolation room in Sligo General. Ted’s blood had shown blast cells when viewed under a microscope, the consultant tells us. 'Blasts?' I remember asking, the new word exploding in my head. 'Cancer. Leukaemia.'

Rachel O'Dwyer
Sat Mar 16 2024 - 07:00

There’s a famous quote from the politician Margaret Thatcher: “There’s no such thing as society. There are individual men and women and there are families.” Thatcher’s words echoed in the Care Referendum, when our Taoiseach was captured saying that care was not the State’s responsibility.

In February of 2022, our son Ted was pale and tired. Our GP ordered blood tests “to be safe”. Twenty-four hours and one phone call later, we are in an isolation room in Sligo General. Ted’s blood had shown blast cells when viewed under a microscope, the consultant tells us. “Blasts?” I remember asking, the new word exploding in my head. “Cancer. Leukaemia.”

Since then, my husband and I have both become carers. We’ve received support from strangers, friends, family and the State. But we’ve also cared alone, in an Ireland where care is increasingly a family matter, or a private good.

Leukaemia is, to borrow a consultant’s expression: “a marathon; not a sprint”. It starts with six months of aggressive therapy, with medicines that will save his life but might also kill him. It’s like a nightmarish maternity leave, I remember thinking, the hum of sleep deprivation, that sense of being ejected from your old life. This new life has an alien vocabulary: diploidy, minimal residual disease, methotrexate, encephalopathy, brain insult. I often think this disconnect must have been keenest for Ted. One day he lived in a house by the sea. Now he seems to believe his parents have taken him to “live” in the four walls of this hospital room, with its pain and fear.

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For the first 18 months, I take carer’s leave. I struggle to call myself a “carer”. Our experience has shown us families facing greater challenges. And this word suggests I’m doing something beyond what any parent would do. I’m not

Ours is a society built on free will and individual choice, but painfully – excruciatingly – I learn that I never really had that freedom. Slowly, I learn that while I can care for my son, I’m powerless to protect him or keep him tethered to me by the force of my love alone. This still feels monstrous.

After six months of aggressive therapy which, thankfully, rids his body of leukaemia cells, Ted enters what’s known as “maintenance”, a three-year protocol to reduce the risk of relapse. This includes ongoing oral, intravenous and intrathecal chemotherapy, the latter performed under general anaesthetic. There are monthly steroid pulses that leave him anxious and unable to sleep. Every week there is a blood draw to decide his dosage for the coming week.

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For the first 18 months, I take carer’s leave. I struggle to call myself a “carer”. Our experience has shown us families facing greater challenges. And this word suggests I’m doing something beyond what any parent would do. I’m not. But I do learn new set of skills to care for my son: cleaning and flushing his central line, taking blood, administering chemotherapy and seizure medications. I practice on a child-sized doll with blond hair and a central line like the one my son had inserted on the day his treatment began. “You’ll see, this will come to feel normal and then someday, it will stop,” my brother texted me one night. He’s right. Acts of care – things that feel alien at first, do come to feel routine.

Two weeks into maintenance, Ted starts junior infants. After six months of treatment he has almost no white blood cells. He spends his birthday in hospital, on a slow rebound from two strains of flu and Covid. We make the endless walk to the children’s cancer ward, nodding to the guards who know us by sight. I’m distracted, trying to decide how I’ll explain that tomorrow’s party is cancelled, when unprompted a voice at my elbow says: “We can still have a nice time, just us three?” I know this much – it’s not my sick child’s job to care for his mother. But the next day we all sit together, making paper birthday balloons to decorate the room. This memory is light.

An ICU nurse tells me to keep a record of everything because my son will have questions one day. Sitting beside Ted, unconscious and intubated, I know this is not ‘practical advice’. His casual conjuring of my adult son is his gift to me

It’s mostly just us three, or two, while one parent works or sleeps. I feel closer to my husband but also distanced by the strain. I miss dates. I miss making plans. I think we hope that our care for our son can hold a referred love, that this will be enough for now.

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Friends and family understood the crisis of a diagnosis, helping us to move house, dropping food to the hospital. But everyone is stretched so thin. Maintenance is long. Care is hard to maintain. They tell us to make time for self-care, to fill our cup before we fill our son’s. But caring for a sick child means giving when your cup is empty.

In the bleakest moments, there are acts of care. An ICU nurse tells me to keep a record of everything because my son will have questions one day. Sitting beside Ted, unconscious and intubated, I know this is not “practical advice”. His casual conjuring of my adult son is his gift to me. Now he hangs a bag of platelets. Here is another. There is Chrissy, who carefully cleans the cancer ward and seems to know each child and parent by name. Months later, when we are home, Michael, a volunteer from Blood Bikes, will come each week to collect Ted’s blood and ferry it to the lab for testing. Outside the ward is an unassuming cardboard box. Inside are small brightly coloured hats. Ted carefully selects the pink one. I picture these makers in their homes, knitting the one hat my child will go on to wear through the winter without hair.

Care cannot be a matter for families alone. We are already so lonely. I don’t think it’s a matter for the State alone either; many of us want to care for those who need it and for those we love. But in order to do so, we need support from the State

If “work” and “society” are the tip of the iceberg, as the economists JK Gibson-Graham have argued, then acts of care are the invisible bulk that keeps us all afloat. It’s families caring for sick and disabled children, spouses caring for spouses and children caring for their parents. It’s exhausted nurses giving more than medicine when the State won’t pay them a living wage. It’s Chrissy, gently moving her mop under the hospital bed, so that things can be clean and set to rights. It’s Blood Bikes and blood donation. Not all care can be costed, but in Ireland invisible carers save the state €20 billion each year.

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As Emily Kenway writes in Who Cares, The Hidden Crisis of Caregiving and How We Solve It: “The family as it’s currently constituted cannot support the weight of care.” In a reflection of last week’s twin referendums, the only way to do so might be to radically rethink the categories, not just of care, but of kin, community and family. This takes changes in how we, as a society, live, work, parent, and maintain our communities. Care cannot be a matter for families alone. We are already so lonely. I don’t think it’s a matter for the State alone either; many of us want to care for those who need it and for those we love. But in order to do so, we need support from the State, financial support for carers, gender parity, a legally enshrined right to provide care, things that arguably might be taken or supported by future constitutional amendment. (It’s a long list, so I’ll take a decent car park in the new children’s hospital if anyone’s offering.) I believe in that future Ted. I want him to grow up in an Ireland where care is still possible.

Rachel O’Dwyer is a writer and a lecturer in digital cultures in the National College of Art and Design, Dublin, and the author of Tokens: The Future of Money in the Age of the Platform

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