“What’s the worst thing that has ever happened to you?” our son likes to ask. “You, getting leukaemia,” we always answer. “No,” he says, “that happened to me; it didn’t happen to you. What’s the worst thing that ever happened to you?”
He wants stories of bones broken and healed without anaesthetic, long hospital stays to match his own lived experience. Eventually my husband, P, tries to explain that the worst thing that happens to someone you love can also be your own. We’re not islands of pain; we’re connected to those we care for. Ted doesn’t like this answer, and I can see why. There’s something a little icky about taking your child’s illness and making it your pain, something he lived through and we only witnessed.
Last Saturday, Ted fell asleep at 7pm. It’s been six weeks of colds and stomach bugs, my phone pinging with automated reminders from the school that my child has now missed 10 days, then 15. At 20, the school will be obliged to report.
This is totally normal, his teacher says when I drop him off on Friday. There are so many things doing the rounds. Falling asleep early after a long week is also probably normal – tiredness, viruses, a growth spurt.
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P carries Ted to bed and we sit for a moment in the now silent livingroom. “Has he been pale this week?” P ventures. He wondered at training, but decided Ted was no paler than any other child that Thursday in the frigid rain. I’d asked the same question that afternoon; I often do. As they walked off the pitch, I cycled between my husband’s ruddier complexion and Ted’s, trying to tell if my son looked tired or just like himself.
I look for signs that something is wrong. But most of the time, when I watch him play football, I’m ecstatic. After more than three years of treatment, seeing him run full tilt is still an extraordinary gift, a second chance to be a family. Gratitude rushes up in ordinary moments where my brain is screaming “thank you” to anyone who might be listening – “thank you for letting my child live.” Or maybe it’s “please.”
It’s not happiness or peace, exactly. It’s closer to CS Lewis’s definition of joy: a longing that’s almost unhappiness, but the kind we want. This joy is never in our power. It’s knowing that control was always an illusion.
“What’s the worst thing that ever happened to you?”
“You, getting leukaemia, and not being able to stop it. Being your mother and giving away control, that moment when you coloured at my feet while I signed consent forms and put your life in someone else’s hands.”
We live in a world that insists we’re individuals – little islands of agency and choice. Our struggles and successes are framed as the result of our own decisions, rather than the society and contexts we live in. Cancer – or any catastrophic illness – makes us face the fact that individual control is an illusion, or at best a gauze over a murkier, more entangled reality. One where we don’t manage our bodies or our fates, and must, instead, lean on each other.
One of the hardest things to let go of as a parent is the belief that you can protect your child. You’re bound by love, but you have no more control than anyone else.
If illness teaches us anything (and I’m not sure it does), it’s that connection is what saves and undoes us – that love is joyful precisely because there is no control.
Today Ted asked why he was always getting sick. We were driving to the doctor’s for a review, one where I would list his symptoms and walk a hand-wringing line between wanting to be sent home and wanting her to order a battery of tests.
I explained that his immune system was still weaker than other children’s, but getting stronger. “Why did I have to get cancer?” he asked. Now that he’s older, he wants more answers. “I don’t know,” I said. “There’s no good answer.”
I told him instead about another mother on St John’s Ward, who once admitted she felt angry that other children were healthy. “Were you?” Ted asked. “No,” I said. “It still makes me sad – it’s not fair – but I also thought, well, why not my child?”
Ted meets my gaze in the rear-view mirror, disapproving. “Not nice,” he says.
The GP orders bloods, to be safe, or more likely to reassure an anxious parent. I scrutinise the familiar full blood count form as we walk to the car. Under details she’s written: “Recurrent infections. Background: ALL.”
Ted skips ahead, buoyed by the prospect of an afternoon off school. “I think I might be feeling well enough to go to training,” he calls over his shoulder.
Not tonight, I think, but maybe Thursday. I let the please and the thank you mingle. Not in control, but still here. That’s joy enough.
