Disappearing into your child's illness

Make or break ... a seriously ill child puts a great strain on a family.
Make or break ... a seriously ill child puts a great strain on a family. Photo: Getty Images

When her daughter became seriously ill, Georgia Blain entered a dark, almost mythical, kind of underworld.

Two years ago, when my daughter was 12, our lives veered violently and suddenly off track. She became seriously ill with a condition that mystified doctors and saw her in hospital for more than a month.

She'd always been a healthy child, and illness was never something I feared as a parent. I worried about her being unhappy or lonely or having a terrible accident, but I didn't think she'd ever become sick. Not like that.

She had a condition known as pericarditis, a gathering of fluid around the heart that constricts its movement. It rarely affects children and the symptoms were not the type that would normally make you anxious: tiredness, slight fever, vomiting and a strange pain in her chest when she lay down.

These are complaints that could easily have been dismissed, but our GP was vigilant and probably saved her life. In a matter of hours, our daughter went from heart ultrasounds to emergency to being slotted in for heart surgery. We had entered the world of the Sick Child, a place that is like a separate universe, a parallel existence. The Underworld, as I came to call it.

Each day I drove to the children's hospital at 6am. I walked to the entrance like an old, hunched woman, clutching two green bags filled with clean clothes, books and small items that I hoped would cheer her or provide distraction. As soon as I stepped through the doors, I began the day shift as my daughter's keeper, her guard and her protector. I straightened my back, summoned my energy and forced down the fear, until my partner, Andrew, came for the evening shift and I walked out, hunched again, my two green bags filled with washing to take home.

Our stay was much longer than anyone expected. There were complications, and the health teams began to multiply. She had a cardio team, infectious diseases team, pain team, pulmonary team, even an orthopaedics team, and they examined her blood, sputum, urine, heart and lungs, over and over - while she continued to deteriorate.

My memories of that time are patchy, and they are a strange mix of the terrifying, the blackly comic, the bleak and the mundane. I can recall the numbing routine of the days: the meal times, the medication times, the doctor's rounds, the school teacher's visit, the daily attempt to shower my daughter, the blood nurse, the afternoon fevers, and the "special" days, when footballers came to visit or therapy dogs were brought in for children to pat.

I would tell the doctors my name but they never used it. I became "mum" and Andrew became "dad" and even though I knew the practical reason for this, I felt completely stripped of any identity. I remember the loneliness of the weekends, when many of the patients could go home but my daughter was always kept on the ward.

I remember having to grasp information and make decisions, having to navigate an alien system quickly and vigilantly, at times when I could barely retain a sentence of the novel I was trying to read. I remember fighting with a young doctor at 1am after all my daughter's veins had collapsed, and telling him he had just one shot to get a canula in, and then after that refusing to allow him to hurt her any more.

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I remember a nurse's kindness when my daughter developed a blood clot and we were sent down to the bowels of the hospital for an ultrasound at 2am, the terrible pain soothed by the soft stroke of her hand on my daughter's arm. I remember how rapidly my daughter talked each time a fever descended, a strangely lucid nonsense as I sat by her side and applied the only remedy that had any effect, an ice-cold sponge. I remember people telling me they were worried I wasn't coping and wanting to slap them.

But, above all, I remember the extraordinary strength and caring of the other parents inhabiting this strange world at the same time as us. Some had children far sicker than our daughter. They showed us the ropes, gave us advice, shared food and, on the nights when we stayed over, helped us make up a vinyl couch in the one small windowless room we all shared just off the kitchen. When someone's child was discharged, there was always a strange mixture of joy and slight sadness. We were still there. And there were times when I lost faith that an end would ever be in sight.

Our daughter did come home, and fortunately she has never had a relapse. But I know other families we met have had to go back to that world regularly, and I still find my thoughts returning to them whenever I am near the hospital. I felt like we were all inhabiting the Greek myth of the goddess Demeter and her daughter, Persephone, who is stolen by Hades, God of the Underworld. Like her, we were in there bargaining for our children, day after day, and each and every one of us was willing to do anything to have them returned to us, to inhabit the real world again.

Georgia Blain is the author of the short-story collection The Secret Lives of Men (Scribe, $28).

From: Sunday Life

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