We get on

Hard, hard day at work. But still managed to get home early for time with the boy.

Work was harder today. And having got yesterday out of the way, I was better able to concentrate. Also, it was non-stop. Went to the local hospital on the way to work to collect anti-agitation medicine. Then after a Board meeting had to go to the Big National Hospital to meet a doctor and go through the boy's final phase pack of medicines - pain management, nausea/vomiting, agitation, seizure and changes in breathing. And then back to work for another meeting before home.

Got home to find the boy in good spirits, after an unusually good night's sleep. He was sitting on the floor cooking with Mummy. Making apple pie. There are limited things he can do now - spooning the flour, brushing egg and pricking the pastry - but he still loves to be cooking. He was so engrossed that he refused to let me get changed out of my suit until the pie was finished.

Once the pie was finished, he was looking through his recipe book for the next thing to cook. He found the recipe he wanted but was missing one of the ingredients. Undaunted, he announced we would all go to the shops to buy it.

When we got back he looked very tired. And even though he wanted to continue cooking, I persuaded him to sit and watch TV for a while. Then he had his bath unhappily. This was accompanied by a litany of "I no like bath. I no like tapes. I no like bed". He was being very difficult and flinging himself around. But order was restored by promising him a new bedtime book. Very bad in any parental manual but we are beyond manuals now.

Although we would have preferred him to go to bed, he made a big fuss and managed to stay awake until the nurse came. He pre-bedtime routine is now severely curtailed. He can't throw cushions. He can't quite pull the cushion from under Mummy's head and he can't turn the night light on. Has to drag himself around using a bottom shuffle. Can't really crawl now, with the left-sided palsy.

When he had his story and me and the wife got back downstairs, the wife got upset about how little he could do of his former nighttime routine. I didn't exacly help by snapping at her as her crying upsets me and depletes my reserves of energy trying to comfort her. Very selfish of me. Her positivity and focus on the now helps get through the days but doesn't always mean that she recognises changes in the boy until they have become inescapable. My downbeat nature sees the changes much earlier but makes me less happy. Hers is probably the better approach.