Saturday, 15 September 2007

Breathe with me till dawn

Another difficult day. The boy gets weaker. The wife and I more frantic. Until finally we crack with each other.

Boy was awake at normal time. But after an hour wanted a neb and went back to sleep. Still looks so beautiful when asleep, as if nothing is wrong. Woke him up mid-morning.

We had a nice remainder of the morning watching TV and playing with his drum and tambourine. Then he wanted to do painting in the afternoon. For a change he wanted to sit on the floor not easy when he can't support himself. A mix of V cushions and wedging him upright did the trick. Even more unusually, he used his hand to paint with, inspired by Mr Tumble on TV.

As he tired, which didn't take that long, things got more difficult as what he wanted changed every few minutes. Even auntie coming over only helped temporarily. His speech is now so indistinct and quiet that most of the time you have to guess what he is saying.

By the time it came to his bath, me and the wife were at our wits end with emotion about his all round weakness, our tiredness and general wear and tear. I forgot his evening paracetamol and ibuprofen. Cue sharp words from the wife, with me responding in kind. And ending with both of us shouting. Unimpressive all round.

Sad end to the day. And not an enjoyable day. The days are too stressful, too emotional and too tiring to enjoy.

No comments: