At work I somewhat fitfully go through my emails. Thoughts elsewhere and on the boy. He slept well. Too well. Only woke up at nearly lunchtime. This was another sign of decline that the doctors warned us about. That his waking time would reduce. The wife wanted to wake him up. But gave me an anxious call first, her voice trembling with emotion. Another more emotional call a while later to say he was awake but not wanting to sit up. And finally a further call a further while later to say he was upright in his chair painting. Any wonder it was hard to concentrate at work?
Left work early. The boy was watching TV when I got back. He gestured that he wanted to go upstairs while I got changed. Carried him up, supporting his neck as it lolls a bit like a newborn's. I don't know what the biodynamics of carrying someone with little muscle control is but he is so heavy to carry now. Arms and legs not helping distribute the weight. And his good arm making irregular forearm smashes to my neck.
When I put him on the bed he says he feels sick. Probably the most movement he's had all day coming upstairs. We give him some anti-sickness medicine but it may be really headache nausea. We play on the bed whilst the wife goes to the chemist. A bit tricky to get changed as I can't be sure whether he's suddenly going to lurch off the bed while I do so.
He says he needs his nappy changing. Once done he says that Mummy and Daddy's bed needs changing as a result. I say he didn't wet it. He insists he did and it must be changed. Rolls around the floor in a circle using his 'good' leg for added stroppy emphasis. I give in. Cradling him in my lap we throw the pillows off the bed. Then he mumbles "I know" and wants to go to his room. I carry him there, whereupon he says he wants the chair which he used to sit on whilst his bed was being changed taken into my bedroom. Sweating profusely, I grapple with the boy in one arm and the chair in the other and stagger back to my room. Plonk him on the chair and try to cradle him with one arm whilst stripping the bed with the other. With relief, I readily agree when he says he wants to go back downstairs.
He wants to do more cooking. He likes getting the ingredients ready. Pointing to the recipe and telling me what to bring and then what utensils he will need. We start to make pastry but he keeps spilling the flour as his 'good' hand has lost fine motor control. Eventually, he gives up and we do pretend cooking as this is less messy. He loves banging the masher in the bowl and the noise this makes.
He is good with his bath. But is refusing the bath chair. So I have to hold on to both arms while the wife washes him. And then the wife reads him a story before he goes to sleep.
I cook the wife and I a meal but am worn from two hours of looking after him. It is so physically demanding and mentally draining.
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