How my heart behaves

The chest infection seems under control after a couple of difficult nights. But it doesn't get any easier to deal with.

The boy is so hard to understand. His signs are now so sketchy that even the wife and I have trouble in following them. More and more is guesswork or asking yes/no questions. It can be very tiring and frustrating for us all as he shakes his head when you have asked the wrong thing for the tenth time. But still we paint and cook.

His sleeping is all messed up and he has spent large parts of the last two nights awake. But despite lying-in the mornings everything looks so much of an effort for him.

The Community Nurses came to do bloods and change the dressing for his central line. They also explained to me, while the wife was elsewhere, what to do when he dies (death has to be certified by a doctor who has seen him in the last 14 days or he has to go to the coroner). And they asked if we had contacted funeral directors. We hadn't. So with the wife absent I made the call. Much harder than I expected. Found it really upsetting to be calling about the future death of a little boy. Had a b it of a cry afterwards. But at least it is done and we have the information.

Feel in mouring already. Which is wrong when he is still with us. Funny how grief manifests itself physically. A permanent lump in my stomach and feeling sick. Finding it hard to eat at the moment and eat rubbish when I do.