The Children's Hospital is in an old Victorian building, better suited to the old days of large wards with the beds lined up in military fashion down each side and, you can imagine, a matron who didn't stand for any nonsense!
Our ward has been split up into cubicles with three sides and a glass partition onto the corridor. The children here are all chronic cases of one kind or another so need to be in isolation as far as it can be managed.
The cubicles start off bare, then an incubator, cot, bed or theatre stretcher appears with or without a child. Then the child, hopefully with family. Various monitors, pumps and other apparatus are wheeled in - beeps, buzzers, counters and flashing lights illuminating the effect of what the illness is having on the child's health.
Parents hover nervously in the background feeling they are in the way or pose forcefully over their child like a defending archangel defying the doctors not to do their best.
Walking up and down the corridor - you aren't allowed to eat or drink in the rooms if you aren't the patient - it is like an exhibition of macabre medical tableaux. It doesn't seem right or fair for these little ones to be lying still with drains, wires and tubes controlling their lives.
Yet it's not an unhappy place, the staff are endlessly, endlessly cheerful from the cleaners, to the playworker (sorry I still can't find anything for him to do but the hospital teacher is coming in tomorrow - she might have something), to the students, the nurses, the doctors and consultants.
There is never a feeling that you are in the way, that you are asking a stupid question, that you don't matter. For this I am very grateful that we didn't end up in the adult hospital where I couldn't be with him and my son would have had to deal with this on his own. Of course fitting the parent's bed into the melee of our room is just one more challenge for the end of a monotonous yet tiring day but fifteen or not, I couldn't leave him.
Having only just been diagnosed with Crohn's this is still very new to us both, but you can see that some of the families are experts at this sort of thing. They come in with lists of symptoms, prescriptions, their own devices, their own pillows. They move easily into the time warp that is hospital life. There are no clocks because time is meaningless except where it involves a controlled dosage or procedure and that is not ours to decide.
And there is hope here, because not to hope would be a betrayal of the love these parents and carers have for their children. There is little sense of 'suffering' - the only ones that cry really are the little babies and it's harder for their parents when they don't cry.
Suffering is said to be the reaction to a loss of control, something I am identifying with. But these other parents have created their own control through love. They learn to love, to include, to possess these illnesses, conditions and diseases because they are part of their children and they love their children. They see past all the prejudice and assumptions and limitations of whatever 'it' is because what would that achieve? Like a dark shadow, they have seen that it is as much a part of their child as the light in their eyes. The battle is for the child, for the light to be the stronger, to come out on top.
This atmosphere of love, of hope, of stubborn defiance is permeable through the glass borders of our little worlds. I often imagine if we could come together, if we could focus that Will, then there would be miracles - but then there probably are - every day. It isn't a place I would choose to be but it has been a lesson I've been grateful to learn.