When I was younger I had several physical problems, needing several operations. By the time I was 13 I’d had 10 – 15 operations. I was a sickly little thing. It was one of those things. I knew nothing different. I thought that was what happened. My parents were amazingly supportive. My mother would stay when she could. I never remember being alone, except for the last operation, when 13 I was on an adult ward. Most things I have forgotten, but  I do remember certain things.

I remember my third birthday vividly. I was recovering after major surgery. I remember needing help to open my presents.

I remember when I was six, waking in intensive care in the dead of night. There was a male nurse looking after me. He gave me a drink of water with a cup with a spout on, as I couldn’t move.

I have since read my medical notes, the period in intensive care I was extremely ill, needing blood transfusions. I have a clear image of watching what was happening to me, looking from above, down on what was happening.  I remember the staff looking after me, putting the bags of blood up. I can remember the staff being frenetically busy around me, there was a lot of shouting, but I always remember that I was calm, very calm. I was very sick. According to my medical notes I was unconscious. But I remember it, vividly.

Sometimes I will have what could be explained as flash backs. Strong orange squash can transport me straight back into hospital. I am not scared, but I am there, I can smell the disinfectant. Looking at strip fluorescent lighting on ceilings can have me travelling down to the operating theatre on a trolley, lights going past like cartridges of a train, one after the other. The worst feeling I have is if I have something  resting on the bridge of my nose, like wearing sun glasses. I feel the sense of fear, it’s from when I would have a mask on my face as I was being anaesthetised. I would have a feeling of falling, plunging into darkness.

The boys have these moments. A sight, a sound, a smell. They can be snatched out of the here and now, into an experience. They handle these moments much better these days. They are learning to understand what these feelings are. They are piecing their jigsaws together. But there are pieces, which they can’t find, which are too dark for the sky. There are pieces left, we keep trying them, going back and reviewing, and moving other pieces around. There may be pieces missing always, but at least they have most of the picture, to understand, to reflect.


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