The Spoons go Back in The Drawer

I would be the first to admit that I am not myself every third weekend. I suspect that, like almost all parents of a severely disabled child, guilt rears its head at every turn. If you feel impatient you feel guilty. If you wish you could escape some aspect of it all you feel guilty. You patch it up and muddle along and get by but you feel you could do more, or do it better. My way of coping usually involves being bad tempered with everyone else in the house, unfortunately. I can hear myself doing it but I can't stop myself.

I walk round saying terrible things, because I know if I say them I won't actually do them. When the screaming gets intolerable I say "Sorry but now I am going to have to remove your tonsils with this spoon!". Probably the only reason I haven't removed his tonsils with a spoon is that I gave myself away within earshot of the rest of my family in advance. The other children think this is dreadful. I feel guilty of course.

The bits in between the three-weekly onslaught of the over-active tonsils is "normal". All the spoons stay in the drawer. I used to think that we had to go out and do things in these two intervening weeks. It got to be a struggle to find things to do that didn't involve going shopping with the attendant threat of spending money accidentally. In the end I realised that being normal (a new concept to us) actually meant that you could decide to stay IN and do nothing much. This is an option that normal people have apparently and they don't feel any compulsion to go out simply because nothing is stopping them from doing it. Now that I have learned this, things are much nicer in weeks one and two. I no longer feel guilty about wasting time. One less thing to feel guilty about.