Mar 8

Long long night last night.

Joshua is increasingly confused and he wakes up and wants to do things he shouldn’t – like getting himself out of the bed to go to the bathroom at 4.30am.

He tends to wake up and think its 6months or so ago, but with smatterings of now, and wants to know why we let him sleep so long because now he’s missed dinner! Unfortunately, his stomach doesn’t digest any longer, so food is out of the question.

I think one of the things I’ll suggest to the hospital is a handout telling you what to expect when you take your child home to die. Because this is not what was expected. Not at all.

Of course, Tony tells me its because he takes after his mother and he’s a stubborn cuss and thats how he’s still going.