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Illustration by Marley Allen-Ash
There’s a quiet magic in seeing your baby move on the screen for the first time – the flicker of a heartbeat, the flutter of tiny limbs. That image, grainy and surreal, felt like a quiet declaration: you’re not alone in your body any more.
Pregnancy, especially with a chronic illness, is never just joy. It’s joy braided with fear.
I live with IgA nephropathy, a chronic kidney disease that, in some cases, can progress to kidney failure. Since February, 2023, my health has been at the centre of my life. Managing my energy, tracking symptoms, preparing for diagnostics and dealing with dreaded 24-hour urine tests (which involve collecting all of your urine for an entire day, I do them almost monthly) – it became a full-time job.
When I was first diagnosed, the idea of becoming a parent felt abstract at best and impossible at worst. To be stable and six months pregnant today feels like nothing short of a gift.
In fact, my health has been better than expected. My kidney function hasn’t declined and some of my levels are actually better than they were before pregnancy. I’m grateful for every day my body continues to co-operate. I know others in similar situations don’t always get that kind of grace. I carry that knowledge with me and it humbles me daily.
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I think about the future a lot more now; not just mine, but my child’s. What happens if my health takes a turn in five, 10 or 15 years? How do I care for a small human while managing a body that doesn’t always keep pace? Chronic illness forces you to live with a certain low-grade vigilance, a readiness for symptoms to reappear or escalate. I worry that this mental space – which used to be reserved just for me – will now be shared, perhaps unequally, with the needs of a child who will rely on me completely.
I also think about logistics. What happens if I need to start dialysis? What if I require a transplant one day? Concerns like this wouldn’t only disrupt my own life, but also my child’s school pickups, birthday parties and bedtime routines. Parenthood doesn’t press pause for health crises.
And then, there’s the guilt.
There is evidence suggesting IgA nephropathy may have a genetic component, and I wake up at 2 a.m. wondering if my child will one day sit across from a doctor and hear the same diagnosis. The idea that I may have passed on something so life-altering is deeply unsettling. Of course, no parent can guarantee perfect health, but when you know the physical and emotional toll of a condition like this, it’s hard not to feel responsible.
Having this disease has shaped the way I planned my days, my years, my entire sense of possibility. But pregnancy has disrupted that rhythm. My focus now extends beyond myself.
There’s a strange kind of freedom in that. For the first time in a long time, I’m not the sole centre of my care. There’s someone else to think about – someone whose well-being matters even more than mine. That shift, while terrifying, also feels like a relief. I don’t want my life to orbit around test results forever. I don’t want to be consumed by what-ifs.
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Pregnancy has also brought joy. Real joy. I’ve spent so much of the past year and a half since my diagnosis managing loss – the loss of a future I thought I had, the loss of certainty, the loss of feeling in control of my body. Now, I get to build something again; someone, really. My life is expanding instead of contracting. That’s not to say I’m unafraid or naive about what’s ahead.
I’m capable of holding both – the fear and the joy, the worry and the wonder. I think that’s what motherhood is, in the end: learning to hold conflicting truths and still move forward with love.
I know there will be challenges going forward. I know I’ll have to learn to balance caring for myself with caring for someone else. For now, I focus on the good days. I let myself imagine my child laughing. I picture bedtime stories, muddy shoes and the mess of a life built with someone small. I let myself believe that maybe there’s more waiting for me than I ever thought possible.
And that belief – shaky, complicated, hard-won – is the strongest I’ve felt in years.
Christina Mangiola lives in Toronto.
