My last days with my daughter

Before I walked into Ruby’s room, I always paused at the door and put on a smile.

It became a ritual. However bad the day had been, however frightened or tired I was, I would stop for a second, breathe, and walk in smiling. Then I would start singing her little Ruby song. For a long time she could not really track me, but her eyesight improved, and eventually she followed me all the way from the door to her bed. In a life that had become full of numbers, risks, alarms and waiting, there she was, watching her dad come into the room.

For two and a half years of her life, my wife Elle and I lived between home and Great Ormond Street Hospital. Our daughter Ruby had an ultra-rare condition called PMM2-CDG, which disrupts how 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 people ran marathons for, the place you dropped change into a bucket for, 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 long enough, 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 privately and the places where you could not. In the mornings I ate cornflakes. I drank countless cups of tea. I wore slippers and walked the corridors at strange 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 met other parents there, or in the corridors outside. We would chat, hug, and then forever nod at each other in passing.

We live in Highbury, which meant I could get to Great Ormond Street in 11 and a half minutes if I pushed it. I timed it because that is what long hospital life does to you. It makes you precise in odd places. My phone became an anxiety bomb. I would sit in meetings waiting for it to light up, and when it did my body reacted before my mind had caught up.

At the start, the worst thing was waiting for a diagnosis. Different teams arrived and speculated. You are told not to Google, which is like being told not to breathe while underwater. Of course we Googled. I have never been so frightened in my life. When the diagnosis finally came, I felt dumbstruck, as though I had been hit by a train or dropped into somebody else’s film. In that phase I started behaving oddly. I remember holding doors open for anyone who looked as if they might be a consultant or researcher, as though courtesy itself might somehow improve Ruby’s odds.

After a while, my wife and I became what people in that world become, medical parents. Knowledge became power. We read papers late into the night. I hunted down abstracts from journals and tried to make sense of them. I found doctors around the world, emailed them, spoke to them, learned their language because I had to. My wife was extraordinary at this. You become that version of yourself because your child is lying in front of you and there is no alternative.

Ruby was never just a child in a hospital bed. She was funny, beautiful and kind. She had wonderful hair, the kind that became a talking point, and I keep a clipping of it on my desk now. She loved music. Near the end of her life she developed a little trick of banging on the table with her hand when she wanted attention. We did not really have milestones with Ruby, we had inchstones, and we celebrated every one. The first time she put a dummy in her mouth, I ran out of the room to tell anyone who would listen, as though 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 begin with the words “everything’s OK”. If they did not, I would know instantly. Mercifully, they did. Afterwards came what I think of now as Ruby’s golden period. She was doing things we had never imagined possible. I let myself think, as parents probably should not, that maybe we had beaten it.

At the same time, I lost my job. But catastrophe does not remove the need to earn money. So I built a new organisation in the cracks of hospital life, on laptops, behind virtual backgrounds, and around Ruby’s life and needs. The mercy of that work was that it let me be present. Whenever Ruby opened her eyes, all she saw was me or Elle. All she knew was love.

Near the end, one of the consultants and I were talking plainly. I asked him, in my own way, whether there were monsters at the window, waiting to get in. He looked at me and said, “I’m afraid they’re sitting on her bed.” I have always liked language. I have always tried to soften things, to find a way round. But there are some sentences you cannot think your way around. They just stand there.

Ruby died in January. We were able to bring her out of intensive care so that she did not die surrounded by beeping machines and bright panic. She died in bed between me and her mum, with David Bowie playing and stars being beamed onto the ceiling. It was unbearable and somehow perfect.

People talk a lot about resilience. I understand why. It is a neat word, useful in boardrooms and reassuring in speeches. But prolonged hospital life teaches you that love is often much less glamorous than resilience. Love is repetition. Love is exhaustion. Love is taking calls from hospital. Love is changing a feed, learning the jargon, timing the route, smiling before you enter the room. Love is staying.

What I did not understand before Ruby is that families who live in hospitals are not unusual people. They are ordinary people to whom something extraordinary has happened. They are carrying, all at once, medical fear, financial pressure, administrative burden, and the daily work of trying to remain human in a place built around crisis. You cannot fully understand that world unless you have entered it. But you can make it less lonely. You can turn up. You can help. You can stay.

If I have one lasting consolation, it is this: in two short years, Ruby knew music, laughter, absurd amounts of love, and the sight of her parents walking through the door towards her. In the end, that is what I come back to. Not the jargon, not the waiting, not the terror. Just this: whenever she opened her eyes, someone who loved her was there.

The author recommends donations to Project PMM2.

[Further reading: In search of a homeland]