My day begins earlier now, as I slip downstairs in what should be the quiet of the night. A peek at Amana, tucked up in her room at the far end of the corridor, sheltered as much as is possible from the bustle of the hospice night shift.
A baby cries. Long, choking wails of a child so overtired and worn out with coughing that only sleep will fix, only sleep is the one thing the seizures will not allow to happen.
It is not my child, but I remember those nights. Walking with Imi on my shoulder, a towel ready for the inevitable vomit, wondering if it will happen before or after enough sedative has been absorbed to allow for rest, once the pain of reflux has subsided. Speculation this, as obviously the night staff do not tell me other children's stories. But I have seen the stuff limbs, the small head, the weary parents, and I remember this.
I want to tell them that it gets better, that they will have so many wonderful times with their child. That there will be times when the meds work, and the dog lifts, and they can celebrate their child and create amazing memories. And then I look into Imi next door, as she sleepwakes through her final times, and I think perhaps I am not the person they need to speak to today.
I look in on Imi. She is awake. Her needs are both minimal and huge now. Medications infused subcutaneously, into lines in her leg and stomach. Thighs bruised from failed lines, but comfortable and calm when all is working correctly. Two hourly turns, mouth care, a daily wash, soft light, something quiet to listen to, and a stack of balloons to watch.
It has been a month, more or less, since she had anything to eat, a fortnight since she had more than minimal amounts of fluid in her stomach. I see the difference in her physically more through the eyes of our visitors than by looking at her. She has lost her initial puffiness. She is getting rather thin, they tell me. Her eyes have dark shadows, and her poor, poor mouth is a mass of blisters and foul smelling sticky secretions.
And she is floppy. Arms which flop as we roll her, fists unclenched, fingers gently twitching the last remaining indicators of the massive spasms which held her rigid and upright for so long. Impossible now to think of trying to sit her in a wheelchair; her body would flow through the straps and restraints and land puddled on the floor.
She talks, sometimes. A quiet shout for a favourite carer three days ago choosing to blink now instead of move her so sore mouth sometimes, she tells me she is not in pain elsewhere.
She mostly ignores my questions; they seem to be a distraction. But she will still let us know she needs another story on her iPad. Or that she prefers to lie on one side than the other. Apart from that, she sleeps. And wakes. Sometimes both at the same time.
Often now, she will open her eyes once visitors have left. Yes, she knew they were there. No, she had nothing to say to them.
And so, she drifts. She is aware of us. Sometimes her hand appears to want to be held. Other times, touch is clearly an unwelcome distraction. Conversation across the bed is sometimes appreciated, other times causes seizures.
Her meds need increasing every few days as her body, whilst shrinking, appears to need more help reducing pain and seizures.
Is she happy? I can't tell. She doesn't answer. She will make the effort to let us know when she is in pain, and will often make the effort to tell me when she is not, too. This is reassuring.
For the rest, I mostly sit and watch. She appears to appreciate this. Time passes. Slow time, when she is awake, and we have eye contact, beyond words. Very very slow time, when CD keys need tracking down, when a second nurse must be found to check of drugs, when she is in pain and I cannot simply crack open the morphine because there is A Process, and it must be followed. And fast time, when what feels like to blinks is in fact the gap between lunch and tea, and I am sure I am still full from breakfast.
Conversation happens around us. I meet friends, move away from Imi's bedside to accommodate others who also love her very much, and realise that the rest of the world talks faster, louder, harder. And I have no idea what day it is, or date, just that my daughter is lying quietly in a balloon filled bedroom, moving slowly further along a road I cannot take for a while yet. She is more at peace with this than I am.
And time keeps on passing. Christmas appears to be happening around us. Every time I step out of Imi's room, more tinsel has crept up the corridor to greet us. A Christmas show, and I am ambushed by jolly women in onesies singing about how we should "look to the future now/it's only just begun." Daily countdowns everywhere, reminders that Amana has just one more week at school, that last posting dates have happened, that we should have trees and festivities and general hilarity.
And there should be good times. This is a time for feasting, although my child cannot manage even 100 calories a day. This is a celebration, just as much as it is my own personal devastation.
I wonder how Abba God felt when Jesus was born? Heavenly hosts singing alleluia, and the knowledge this baby would become a refugee, and later die a cruel death. At least I know that when my desolation is complete, Imi's happiness will be fulfilled and in ways beyond my own imagining. Her first Christmas at the feet of the King, or my last with her here? She doesn't say which she'd prefer. And honestly? I'm not sure I can either.