'We cared alone. We broke alone.' (Dominika Zarzycka/NurPhoto via Getty Images)

March 8, 2024   7 mins

You may remember 24 February 2022 as the day Russia invaded Ukraine. My husband and I remember it as the day our five-year-old son was diagnosed with acute lymphoblastic leukaemia. As his mother, I felt I had to give up everything to care for him. After a small respite, his father was largely expected to return to work and get on with things. But today, as Ireland votes in a referendum on whether women are still expected to be carers, I find myself wondering whether, in a fairer, kinder Ireland, we might have had kinder, better choices.

The day I became a carer, I was unloading some shopping from our car, distracted, phone tucked under my chin, on hold to our GP. She had seen my son the day before because he’d been a bit tired lately. And she’d ordered a full blood work panel, telling me there was (probably, most likely) nothing to worry about. But now, suddenly, here was her voice, anguished and wrenched from all professionalism, asking me if there was anyone with me right now. I stumbled indoors and put her on loudspeaker, as though spilling her words into the room might somehow dilute the horror of what she had to say: we needed to go to straight to the hospital because there was something very wrong with his bone marrow.

I don’t have the words to describe the six months that followed: the medications he received, the time he spent in the ICU; the seizure from the chemotherapy they injected into his spine; the words he lost, or the days when he did not know my face. So let’s skip forward to remission, to carer’s leave.

Leukaemia treatment in the UK and Ireland is roughly three-and-a-half years for boys. It is — to use one of the phrases the consultants tossed around a lot — “a marathon; not a sprint”. After six months of aggressive front-line therapy which, thankfully, rid his body of leukaemia cells, our son entered what’s known as “maintenance”, a period of nearly three years designed to reduce the risk of relapse. He still receives daily doses of oral chemotherapy, monthly doses of intravenous chemotherapy, monthly steroid pulses. Every 12 weeks he receives a general anaesthetic and an intrathecal injection into his spine. And every week there is a blood draw to determine the dose of his chemotherapy for the coming week.

I take carer’s leave. Along with the day-to-day business of caring for him and taking him to hospital appointments, I have to learn a whole new set of skills: changing dressings, drawing blood, administering chemotherapy drugs and emergency seizure medications. I practise on a child-sized doll. The doll has matted blonde hair and a central line like the one my son had inserted into his subclavian vein on the day he was admitted to the children’s hospital. Acts of care — things that feel alien at first — do come, gradually, to seem almost normal.

One afternoon in September 2022, I receive a phone call from somebody called Brian*. He tells me that he is our social worker and that this call is just a formality, really, because he would like to formally discharge us from his care. This feels strange, as I wasn’t aware that we were “in his care” in the first place. But I remember him now, a man with a rainbow-coloured lanyard who drew me aside and asked me how I was feeling shortly after my son’s diagnosis. He talked to me about self-care and told me I needed to fill my own cup before I could fill my son’s. “But that’s what being a parent is?” I remember saying, “it’s caring even when your cup is empty”.

“But that’s what being a parent is? It’s caring even when your cup is empty.”

That same month, he starts school. After six months of aggressive chemotherapy, he has almost no white blood cells. He also has no hair. Like most children returning to school after Covid, he is frequently ill. Unlike other children, though, when he gets sick or has a temperature he is admitted to hospital. We drive to the children’s hospital in the dead of night. There are times when my husband and I are united, a team, and other times when the stress and anxiety of these late-night hospital dashes make us fracture and we turn on each other. I have one memory I’m particularly ashamed of: running to the cancer ward in the middle of the night with my son in my arms, a staph infection in his central line, screaming at my husband for forgetting to pack the overnight bag that I had slung over my arm at that very moment, while a group of parents queueing for A&E looked on. My son has been through so much. The very least I can give him is parents who care for each other.

I join a private Facebook group for parents of children with cancer. I need to ask questions about carer’s leave and the financial logistics involved. For the most part it seems that mothers are staying home during maintenance treatment, while fathers are returning to work. The mothers who answer my query put forward various solutions to their financial circumstances, from life insurance policies that cover childhood illnesses, to temporary mortgage freezes, to stress leave, carer’s benefit and relying on grandparents for unpaid childcare. A close friend also gives me the number of a mother she knows whose daughter had leukaemia. This mother suggests I do not try to work while my son is in treatment. “He’ll never need you like he needs you now,” she writes.

With time, my son’s hair begins to grow back, first as a downy peach fuzz and then as ashy blonde curls. People marvel at how fast he can run now and how beautiful his hair is. My friends and even my family frequently ask when my son “finished treatment” and I have to tell them that he is, in fact, still in treatment, and that he will remain in treatment until — best case scenario — April 2025. And in some ways, he will always be in treatment.

My husband and I are both academics, employed by the State. He works throughout our son’s treatment. In September 2023, I return to work full time. My husband now takes carer’s leave and receives carer’s benefit, which in theory allows him to work a maximum number of hours a week — in his case, about a fifth of his usual workload. This is what is supposed to happen. But in reality, he ends up keeping up closer to half of his normal teaching and administrative load on an informal basis, while earning a fifth of his normal salary. He ends up working for free. His department does not hire anybody to replace his classes. Colleagues send emails out of hours and at weekends that begin, “I know you are on carer’s leave but
” — then ask him to take on additional work.

The irony is that these colleagues serve on the board of Athena Swan, a charter put in place to uphold gender equality in the university. And the thing is, I’m sure they imagine that they are upholding gender equality in the workplace. My husband isn’t a woman after all. Surely he has a wife to do this caring for him? Surely there is a mother doing her duties at home, ensuring that the common good can be achieved? I’m not sure if the emails are the result of a misunderstanding about my son’s cancer or part of some bigger problem with the norms of who cares in our society. But the result is that my husband and I both need to work harder, snatching hours when our son is asleep. We both have to care less.

Sometimes I’m angry at him for not pushing back more against his employer. Why didn’t he speak to his head of department about the extra hours before term began? Why didn’t he go to his union? And sometimes I feel he’s angry at me for returning to work in the first place. I can’t argue that there are more obstacles in place now that he is the one doing the caring. Sometimes I feel guilty too. I think of the mother who said of my son “he’ll never need you more than he does now”. I think that maybe she’s right.

“By choosing to care for his son, my husband was treated as though he was letting the side down.”

I fear that part of the problem is that, in Ireland, fathers who take paternity leave or even, it seems, carer’s leave to look after their very sick children, are still viewed as bad workers, as bad colleagues. This is partly the fault of the State. In the Nineties, the Swedish government introduced a “use it or lose it” paternity leave policy. In 1995, 30 days of leave were reserved specifically for each parent, increased to 90 days by 2016. In this way, Sweden didn’t just change the laws about who cares — it altered the social norms. As a result, Swedish fathers who don’t take paternity leave are bad fathers in the eyes of society. And Swedish fathers now take more carer’s leave than other European fathers. But in Ireland, by choosing to care for his son, my husband was treated as though he was letting the side down.

Can we hope to change such harmful attitudes? Today, to mark International Women’s Day, Irish citizens will vote on what’s been called the Care Amendment. The proposed amendment would delete from the Irish constitution Articles 41.2.1: “In particular, the State recognises that by her life within the home, woman gives to the State a support without which the common good cannot be achieved.” And 41.2.2: “The State shall, therefore, endeavour to ensure that mothers shall not be obliged by economic necessity to engage in labour to the neglect of their duties in the home.”

These two clauses recognise a woman’s role in the home. More dubiously, they may even recognise that a woman’s role is in the home. Wiping them from the constitution feels like simple progress, a blot of extant sexism, scrubbed clean. Yet though this referendum is a women’s issue, it is also — as the name suggests — a carer’s issue.

The Irish government want to replace the older, gendered language with a new Constitutional Article (42B) on “Care”: “The State recognises that the provision of care, by members of a family to one another by reason of the bonds that exist among them, gives to Society a support without which the common good cannot be achieved, and shall strive to support such provision.” Care remains in the home. Care is a family matter, not for the State, or for the wider community.

Voting on the Care Amendment seems straightforward. Of course, we will strike a line through the extant role of women in the home. We will pat ourselves on the back for taking yet another progressive stance. But in doing so we align ourselves with an empty identity politics that changes nothing. If we say that a woman’s place is no longer in the home, the words will change, but will that change anything? In theory, women will be liberated from their caring responsibilities — but in reality, they will remain at their loved one’s bedsides with little support from the state. Part of what nearly broke my family in the past two years was that we cared alone in a progressive, neoliberal Ireland. We cared alone. We broke alone. And no one cared.