How low

I don't know how far we are now from the end but it can't be far. It is so much worse a process than even my worst thoughts.

It is only a month since his decline showed itself. But in that time he has stopped walking, stopped being able to sit up, stopped being able to use his left arm, stopped being able to support his head and now is losing the last control of his right arm. It is incredibly painful to watch. As a parent you want to be able to help. And we are helpless. Impotent rage sweeps over me. But the boy is accepting of all this. He doesn't complain. He never says he's in pain - not yet anyway. He just tries to get on with his life.

For him, things go on as normal. Just what is normal slips away each day. He still wants to paint and cook but it is increasingly beyond him. His routines on waking and bedtime continue as they always were. Just there's less he can do and more we have to do.

In high wind one of our windows broke. Seemed like the final straw for me and the wife. She laughed hysterically and then cried. The boy put out his arm to comfort her by giving her a hug. How does he do it?