Kiss

Horrible day. The boy is getting weaker. And for the first time since last December's operation was not cheerful.

My lie in today but it is a mixed blessing, as you worry what will have changed overnight. The boy had another early start which is not good. His balance sitting down is now very poor and he easily over-balances to go sprawling. He still wants to cook but is no longer really up to it. He was not really cheerful at all today. He looked permanently worn out and everything is an effort. We did go out briefly to the shops to get ingredients and so he could watch buses.

It is so, so hard watching his decline. Tomorrow should be his first day at nursery but there is no chance of him going at present. Or ever? I don't know what to do. I veer between anger and irritation and getting upset. He blew Mummy a kiss while I was drying him after his bath and I nearly lost it completely.

Watching a child die is so much harder than watching a parent die. The latter is almost an ok part of life's cycle. With a child it is so unfair. A life hardly lived. He enjoyed his life so much, despite all he had been through. And now it is all being cruely taken away piece by piece.