Before entering Ruby’s room, I always stopped at the door and smiled.
It became a ritual. No matter how bad the day was, no matter how scared or tired I was, I would stop for a second, take a breath and walk with a smile. Then I would start singing her little Ruby song. For a long time she couldn’t really track me, but her vision improved and she eventually followed me all the way from the door to her bed. In a life that had become full of numbers, dangers, alarms and expectations, here she was watching her father enter the room.
For two and a half years of her life, my wife Elle and I lived between the house and Great Ormond Street Hospital. Our daughter Ruby had an ultra-rare condition called PMM2-CDG, which disrupts the way the brain, liver, heart and hormones develop and function. Before her, Great Ormond Street existed in my mind as half-legend, half-fear, the place where people ran marathons, the place where you threw your clothes in a bucket, the place where terrible things happened to other people. Then terrible things happened to us there.
Hospital life has its own geography and then, after a long time, its own logic. I knew our floor so well I could have walked it in the dark. I knew the canteen, the kitchen, the chapel, the places where you could cry in private and the places where you couldn’t. I ate cornflakes in the morning. I drank countless cups of tea. I wore slippers and walked the corridors at odd hours. There were nights when I sat in the chapel of St. Christopher’s Church, inside the hospital, trying to cultivate hope that felt as fragile as glass. Sometimes I would meet other parents there, or in the corridors outside. We would talk, hug and then nod at each other in passing.
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We live in Highbury, which meant I could get to Great Ormond Street in 11 and a half minutes if I pushed. I timed it because that’s what a long hospital life does to you. Makes you accurate in strange places. My phone became an anxiety bomb. I would sit in meetings waiting for it to turn on and when it did, my body would react before my mind could catch up.
At first, the worst thing was waiting for a diagnosis. Various teams came and speculated. You’re told not to Google, which is like being told not to breathe while underwater. Of course we googled. I have never been so scared in my life. When the diagnosis finally came, I felt stunned, like I’d been hit by a train or stepped into someone else’s movie. At that stage I started behaving strangely. I remember holding my doors open to anyone who looked like they might be a consultant or researcher, as if courtesy itself might somehow improve Ruby’s chances.
After a while, my wife and I became what people become in that world, doctor parents. Knowledge became power. We read newspapers until late at night. I looked for journal abstracts and tried to understand them. I found doctors all over the world, emailed them, talked to them, learned their language because I had to. My wife was exceptional at this. You become that version of yourself because your child is laid before you and there is no alternative.
Ruby was never just a baby in a hospital bed. She was funny, beautiful and kind. She had great hair, the kind that became a talking point, and I keep a haircut of it on my desk now. She loved music. Near the end of her life, she developed a little trick of banging her hand on the table when she wanted attention. We didn’t really have milestones with Ruby, we had inchstones and celebrated each one. The first time she put a dummy in her mouth, I ran out of the room to tell anyone who would listen that I had seen a shooting star.
One of the hardest days of my life was the day of Ruby’s liver transplant. Elle donated part of her liver to her. Ruby was the first child in Europe with her condition to have that operation. On the day itself I sat in the middle while the two people I loved most in the world were in surgery, Ruby for nine hours, Elle for four. The rule was that every update from the doctors would start with the words “everything is fine”. If they didn’t, I’d know right away. Mercifully, they did. Then came what I now think of as Ruby’s golden age. She was doing things we never imagined possible. I let myself think, as parents probably shouldn’t, that maybe we had.
At the same time I lost my job. But the disaster does not remove the need to make money. So I built a new organization in the cracks of hospital life, on laptops, behind virtual backdrops and around Ruby’s life and needs. The mercy of that job was that it let me be present. Every time Ruby opened her eyes, all she saw was me or Elle. All she knew was love.
Towards the end, one of the consultants and I were talking clearly. I asked him, in my own way, if there were monsters at the window, waiting to enter. He looked at me and said, “I’m afraid they’re sitting on her bed.” I have always liked language. I’ve always tried to smooth things over, find a way out. But there are some sentences you can’t get your head around. They just stay there.
Ruby died in January. We were able to get her out of intensive care so she wouldn’t die surrounded by beeping machines and intense panic. She died in bed between me and her mother, with David Bowie playing and the stars shining on the ceiling. It was unbearable and somehow perfect.
People talk a lot about resilience. I understand why. It is a clean word, useful in boardrooms and soothing in speeches. But extended hospital life teaches you that love is often far less glamorous than resilience. Love is repetition. Love is exhaustion. Love is taking calls from the hospital. Love is changing a food, learning the lingo, timing the street, smiling before entering the room. Love stays.
What I didn’t realize before Ruby is that families living in hospitals are not unusual people. They are ordinary people who have had something extraordinary happen to them. They immediately bear the medical scares, the financial pressure, the administrative burden, and the daily work of trying to remain human in a country built around crisis. You cannot fully understand that world unless you have entered it. But you can make it less lonely. You can show up. You can help. You can stay.
If I have one lasting consolation, it’s this: in two short years, Ruby knew music, laughter, absurd amounts of love, and the sight of her parents walking through the door toward her. In the end, this is what I come back to. No jargon, no waiting, no terror. Only this: every time she opened her eyes, someone she loved was there.
The author recommends donations to PMM2 project.
(Further reading: In search of the homeland)
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