The boy was awake very, very early. Yawning by 8.00am. Got him downstairs and sat him on a kitchen chair so he could oversee the washing up, since can no longer stand up to do it. Then he decided he wanted to do more cooking. So, we went to the shops. On the way back, he said he wanted to go to the playground. First time I have been there with him since I don't know when.
Was the nicest part of the day. He went on the little slide and the swing. Then wanted to go on the big slide. Was a bit dangerous but I could hardly refuse. I had to carry him up the steps and then run round to the bottom of the slide to get him as he came down. He saw other children running and said he wanted to run. Holding him under both arms, I helped him walk a few steps before it became too much for him. But it was nice to sit on the bench with him and watch the other children play. He saw a girl cycling and said he wanted a bike for his birthday. I agreed. Hardly a promise I will have to fulfill.
We returned to find the hospice there. They looked after him for an hour whilst the wife and I went for a coffee. Had to come back early for the physio. But they were late. Have brought him a bath chair and a mat to lie on when he can't sit up any more. Dispiriting planning. Compounded when I decided I had to ask the hospice to tell me what I need to do with coroner etc when he dies. Didn't tell the wife.
The boy was worn out after the visitors. But still wanted to cook. Tiredness made it a bit of a strain for him and a trial for me. So, we decided not to bother with a bath and let him watch TV instead. Inevitably, at bed time the boy made a fuss notwithstanding how tired he was. I rather lost my temper - hardly a great father - and bathed him with ill grace. Read him a story and gave him a neb. He was asleep within seconds.
So much want our remaining time to be memorable and nice. But it remains, sadly, a slog. Angry at my helplessness.
1 comment:
In our house, we avoid the guilt of occasionally behaving badly, despite cancer, to our son who, despite cancer, is a toddler, by giving Bad Parenting Points. You can rack up 5 BPPs before they start to count.
You're definitely still in the safe range.
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