'We cared alone. We broke alone.' (Dominika Zarzycka/NurPhoto via Getty Images)
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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”.
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SubscribeVote no, if you have a vote. This government couldnt be trusted to change a lightbulb, never mind the cobstitution.
Just been reading the Attorney General’s advice to the Irish Government on today’s referendum which has been leaked: https://www.ontheditch.com/attorney-general-advice-in-full/ It would bear out the above observations. Though it’s impossible to say what the result is going to be, both Varadkar and Martin are showing signs of worry. It mightn’t be too late to have a flutter on a No-No outcome.
Story above, of course, is heart wrenching and there are many people in the writer’s position. Well, actually, it’s quite possible that the haste with which these measures have been pushed through the House and Senate in Dublin relates to a case coming before the Irish Supreme Court in April which is even more harrowing. The point being that the wording proposed for insertion in the Irish Constitution today only obliges the state to “Strive” to support carers, which I presume is no comfort to Ms O’Dwyer and her husband.
I think the point that is made by the article, where both parents ended up taking turns in the carers role while the other went out to work, is that regardless of what the constitution might say:
“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.”
A heart-touching article; may God bless you, your son, your husband, and your family with sound health, mind, body, and soul. May you never know troubles any more.
I’m sure you mean well but if god existed it should have intervened earlier.
Should he? Why? Is he our factotum, whose job it is to make everything in our lives better?
If “he” existed, no, but there’s a question that seems to go begging here, and no amount of theological claptrap can surmount it.
Come off it! You know as well as I “every sperm is sacred”.
This is such a harrowing story. I cannot imagine having the fortitude that this couple has needed to survive. There hasn’t been room for their grief or a day when they might not feel up for it. They always had to be up for it, and be there for each other as well.
As it happens, I have just finished O’Dwyer’s book Tokens, which is excellent, I had no idea of the turmoil going on while she was writing it.
Fundamentally, feminism and liberalism in general are extremely individualistic creeds, they have enormous problems accommodating the relationships that really matter to people, especially children. Regardless of what the constitution says, as the most liberal nation on earth, Ireland will become a worse and worse place to care and be cared for. Maybe that is why the birth rate is collapsing there, it’s just not a very lovely place any more.
Ireland’s fertility rate is second only to France in the EU. Indeed, unlike UK which has been below replacement since 1972, Ireland was till at a healthy 2.03 until as recently as 2011. If fertility rates are related to how horrible a place is then UK and indeed most of the rest of the western world have been more horrible for far longer.
I don’t disagree about the western world, given the high rates of depression and the low rates of fertility I think modern life is bad for humans. But there were just 57k babies born in Ireland last year, a massive drop in a decade. I think there is something very wrong with Ireland, it has taken a wrong term somewhere.
This data would seem to contradict you:
https://www.macrotrends.net/global-metrics/countries/NZL/Ireland/fertility-rate.
The biggest recent drop was 2014-16. The baby boom in Ireland did not completely finish until 1988. I think what is driving things in Ireland is the rejection of Catholicism. In this regard Ireland is playing catch up with the rest of the western world.
That data doesn’t look very reliable, I don’t know how they are calculating that FR. The raw numbers show that every year since 2009 the number of births has gone down in Ireland:
https://www.cso.ie/en/releasesandpublications/ep/p-ieu50/irelandandtheeuat50/society/births/#:~:text=Number%20of%20Births,teenage%20mothers%20continues%20to%20fall.
This is not a healthy society.
It is births per woman rather than births which is why just over 2 is needed for replacement. The graph underneath shows the % change year on year so when it is red the fertility rate is going down which aligns with the raw numbers of births pretty well. The main point is Ireland is in better shape in this regard than most of the west.
Here is another one you can play with but it does not have the latest data.
https://ourworldindata.org/grapher/children-per-woman-un?tab=chart&time=1950..latest&country=IRL~GBR~FRA~HUN
Problem is FR is a derived data point, and the number of women in Ireland is only ever really an approximate figure, so not great for comparing year on year. Live births is a much more accurate figure, and has been falling for 15 years. It’s an important data series, listen to it.
You’re a bit put of date, Adrian.
https://waterford-news.ie/2024/03/08/irelands-birth-rate-drops-sharply-to-reach-lowest-level-in-decades/
It says fertility rate in Ireland is still above EU average.
Is that perhaps due to the recent influx of immigrants?
I think we need to ensure the accuracy of the data that we spread on Unherd and not given the wrong impression. According to Bing Chat AI, the Irish fertility rate for 2023 was 1.786 , and expected to decrease slightly in 2024 to 1.778. Whilst your figures may be correct they do not adequately describe the current situation.
I hate articles like this intended to pull at the heart strings so anyone disagreeing is a villain. Of course it is a horrendous thing for any parent to go through but there are many parents in far, far, far worse situations going through the same or a similar kind of thing. Academics can frequently work from home and don’t lecture for much more than half the year. Everything has a cost. This appeal to the (superior) Swedish system is a common ploy the left uses when it suits them. I was always anti lockdown and thought from the beginning Sweden’s approach was the best one but there was no leftist outcry insisting we adopt their approach. I don’t understand why use it or lose it shames men. It is more like blackmail. I am sure the feminists would be up in arms if shaming was a tactic used to control women’s behaviour.
I really appreciate the honesty of this article. It seems in Ireland we splurge money far and wide on people who don’t really need it, while people who need lot’s of direct attention and support don’t get it. Unfortunately it might be a flaw with the democratic system.
In any society, care cannot be solved by money. Social capital is what gets people through terrible circumstances like this, not professionalising support for people in trouble. In some ways, Ireland in the 1950s supported widows and (“respectable”) mothers much better than rich, modern Ireland.
You even had the Bon Secours in Tuam and presumably elsewhere if there was a ‘problem’.
€20 million+ on this little excursion.
The author and her husband are highly educated academics, who had to interrupt their careers to save their child’s life.
Well worth it, one would say, but are these the responsibilities of the state, or of the family?
Should less privileged people – workmen, laborers, clerks, waitresses – pay for the losses young university professors suffer, when their child is in a cancer battle?
This isn’t a women’s issue, but a family issue. No one saved that child but his mother and father, ultimately, and thank heavens for that.
But if he was an orphan, or didn’t have a father in the home, or instead had neglectful parents, he likely would’ve died, no matter what the level of state interventions.
The trans “debate” has brought the very real differences between men and women back into focus, after certain brands of feminism tried hard to delete them. Whilst secondary sex characteristics, physical, mental and emotional, are distributed differently between the sexes and have considerable overlap, the far stronger bond between a mother and her child than a father and his child is very real too. It is a difference that should not just be air brushed out in the name of “progress”.
The heartlessness and misanthropy of the woke is a real thing.
It’s hard to know what to make of this article once emotion is set aside. Both parents work for the state, meaning their employment is as close to permanent as can be. Is there supposed to be a govt benefit program for every eventuality that exists? And I must be missing the net gain to either women or society that will come from changing some words in an amendment, especially in a time when people treat “woman” as the relic of another language that cannot be properly identified.
Why are NO comments visible?
Just like a modern, Western woman and their new school views on marriage and family. Her child has leukemia, and it becomes an issue about her and her needs. Take care young men looking for a wife: go East, South, or anywhere but not West and do not think with your p***s. May my blessed Mother rest in peace, I miss her more each day and regret the times I did not appreciate her and love her more. Forgive me.
Apparently, my comment was removed because I used an inappropriate word. Will try again. Just like a modern, Western woman. Her child has leukemia and it becomes an issue about her and her needs. Beware young men looking for a woman to marry: go East, South, or anywhere but West and do not think with your organ.
Boy, hard to argue with a point from someone who backs it up with such a difficult life experience.
But here it goes. What is being advocated for is communism. Being a parent is good because it’s good. I helped care for my mom when she was sick, my dad when he was sick, my friend when he was sick, my mother and father-in-law. Just because something is a societal good doesn’t mean that someone else should be forced to pay you to do it. In fact, it is no longer a good deed if you demand money for it.
Parents should care for kids because they are their kids. Just like parents have through evolutionary time. The state (ie: other taxpayers) should not be forced to pay for this. We all have our own family duties and crosses to bear.
Probably the most touching lines ever written on this website.
You would have thought that by now any rational politician would have noticed that referenda are a terrible idea!