‘I don’t want to go to sleep,’ Hannah would cry.
‘It will just be for a little while,’ I’d reassure her.
‘But I don’t want to.’
‘The doctors need to make you sleepy, my darling, but it won’t be for long. A nurse will be with you and I’ll be there until you go to sleep.’
‘But I’m not tired.’
‘Well, the doctor will give you a special medicine so that you are.’
‘How can he do that?’
‘Because he has lots of medicines to do different things: some fight the bugs in your blood and some put you to sleep.’
For a little while Hannah would go quiet as we travelled through the hospital, but as soon as we got to the three anaesthetic rooms leading to the theatres she would start crying. Scrabbling for me with her hands, the doors would open and she would be pushed feet first into the tiny room.
‘Mummy, mummy, I don’t want to sleep,’ she’d sob.
‘I’m here,’ I’d whisper. ‘I’m with you.’
But as a mask was slipped over her face or the anaesthetic was connected to her central line, Hannah would struggle to stay awake even as she started falling into unconsciousness.
‘Help me, help me, help me,’ she would cry as her body twitched and I had to leave the room so that the staff could intubate her.
It was only when I got back into the corridor that I would start to cry. As Hannah lay unconscious in theatre, I would think of her pleas and the cries she had made as she clawed the air for me. Seeing her in pain, whether mental or physical, went against every instinct I had as a mother however much my rational self knew that she had to have treatment.
Now I looked at Hannah’s toenails as the nurse held out the nail varnish remover for me and I wondered what to do. Hannah loved having her nails painted, each one a different colour so that she could stare at the rainbow on her toes – pink, blue, green, red, yellow – as she lay in bed. Even when she couldn’t speak, she’d wiggle her toes so the nurses could admire them.
I knew what I had to say.
‘I can’t take the varnish off,’ I said to the nurse.
She looked at me – sympathy and routine wrestling across her features. Nail varnish was supposed to be removed during a general anaesthetic so that the patient’s nail bed colour could be checked as an indicator of circulation.
‘Just one?’ she asked.
‘No,’ I replied. ‘If I do a toe then you’ll do a toe, then a finger, and soon it will all come off.’
‘But I think we’ll have to.’
‘Well, I don’t want to do it. I’m sorry but I know there are many other ways of checking that she’s OK without seeing her toenails.’
The nurse looked at me.
‘If you have to take it off then I want you to do it while she’s asleep,’ I said slowly. ‘And if you do then I would like someone to draw a chart with every one of her fingers and toes written on it so that you can reapply the varnish before she wakes up. I know it’s a lot of work but it’s important to her.’
The nurse looked at me.
‘We’ll see what we can do,’ she said with a smile.
As the nurse left the room, I looked at the colours sparkling on Hannah’s toes and breathed a sigh of relief. If I was going to let the doctors do what they must to save my child’s life, then they had to listen to me when it came to making it slightly easier for her. She loved looking at her painted nails. I wanted her to have that.
I could hear the cries as they cut through the stillness of the ward. It was the early hours of the morning and I sat up to check that Hannah was still asleep. The sobs echoed down the corridor and cut through me – a haunting lament for a son or daughter lost, an animal howl of grief that made my heart twist. Somewhere nearby, a child had lost its fight against the illness we were all trying to conquer.
These were the darkest moments on the unit – the time when my hope was stretched to its limit. Each day I clung onto it, knowing what might happen if Hannah’s treatment was unsuccessful but believing it would be. Only the sight of an empty bed which hours before had been filled by a dangerously sick child, or the quiet sadness which curled around the unit when a girl or boy died, threatened to dent the dam of hope I’d built inside.
‘Mummy?’ I heard Hannah whisper. ‘What’s that noise?’
I got out of bed and sat down beside her. Looking at her pale face, I wondered how I could possibly explain what had happened without showing my fear.
‘I think one of the children is very poorly and their mummy is sad,’ I said softly.
‘Have they died?’
Death was a concept Hannah had quickly become familiar with in hospital. It was part of life here and she knew that children who were there when she fell asleep had sometimes gone by the time she woke in the morning.
‘I don’t know, Han.’
I smoothed her hair back from her forehead, soft strokes to try and soothe her back into sleep. I didn’t want these sounds to frighten her.
‘What does heaven look like, Mummy?’ she asked.
I paused for a moment. I’d tried to make death and heaven things that didn’t scare Hannah when we’d talked about this before. Now she wanted to again.
‘Heaven is a beautiful place where God lives,’ I said. ‘There are no bad people there, or medicines. Instead there are lots of apples on the trees and daisies in the fields.’
‘Do you have to go to school in heaven?’
‘No. You can play.’
‘How do you get to heaven, Mummy?’
‘If you’re really, really poorly then you fall asleep and wake up there.’
‘Will I go to heaven?’
‘Not now, Han. You only go when you’re very, very sick.’
‘I’m not poorly enough?’
I paused for a moment. A sadness so strong filled me that I could hardly breathe but at the same time I felt a sliver of still peacefulness – gratitude that Hannah could ask questions and trust me to give her any answers I could.
‘No, darling. You’re not poorly enough and I promise that you’ll wake up tomorrow for a whole new day.’
I bent to kiss her.
‘Now close your eyes and I’ll stay right beside you.’
I pulled Hannah’s duvet around her and waited until I was sure she was sleeping again. My body felt tense, my skin almost prickling, as if an aftershock of the woman’s cries still pulsed through me. I thought of all the other parents here in this huge hospital, wondering who else had lost their child tonight. If it wasn’t now, it would be tomorrow or the next day; if it wasn’t an illness, it would be a child brought in after a terrible accident. I shivered as I thought of those parents for whom bereavement came in an instant, the mothers and fathers who had no sign that grief was about to rip a hole in the fabric of their life. Even though I had watched Hannah walk a road I had wished many times that I could travel for her, I was glad I had been given the chance to walk