It's a sin

"When I look back upon my life..."

It's a strange life having a seriously ill child. Strangely geographically constrained. Strangely small number of people. Strangely isolating. At least, it has been for me. Eighteen months so far. Half of it in hospital. But despite this, he has been such fun. This is to remind me what the year has been like.

Life is work and looking after the boy. There really isn't much else. If he's at home, his immunity is usually compromised so he doesn't really see other children. And we don't see other people apart from his wonderful auntie, granny and a friend who lives nearby.

Our life is lived in a circle a mile round our house. We've no car so can't go anywhere - public transport is an infection risk - and during the week the wife couldn't use one. He needs to be accompanied by someone in the back to do suctioning. We don't go on holiday (even to the hospice 15 miles away) for the risk of ending up in a hospital that doesn't know him, which very nearly happened when we tried it.

And looking after him is so tiring that we don't go out in the evenings. I last went out in February and before that in November last year. It used to really bother me that I was losing my friends. But it's not an issue now. It is how it is. The wife has been a bit better at seeing her friends but they are either nearby or are prepared to travel to her. But now even that is declining.

During the week, life revolves around work and the boy. I try to manage work by being pretty strict about leaving in time to see the boy for a couple of hours before giving him his bath, doing his daily trachy tape change and putting him to bed. I manage any extra work by getting in early. I'm lucky my boss is also an early starter.

If the boy's ill and in hospital I will go there straight from work to give the wife a break for a couple of hours. This means getting home late. That's a very wearing time for both of us. Being stuck in a small cubicle all day is no joke.

At the weekends I try to give the wife a break by having him for most of Saturday. It is easier like this, as if I have him for only part of the day he will spend too much time wanting Mummy. Which makes it rather wearing on him and me.

When he wakes up I try to get him to use the potty. He is very proud if he uses it. Then he wants to march off in the bathroom to clean it. But that's it for the potty for the day. We haven't managed to get him to accept the idea that he can use it in the rest of the day. And there have been too many other battles to fight to insist on it. Then he plays and "helps" with the washing up. He tells me what needs washing. And where things should be put away.

Then we play a bit and go to the park. He loves the park. There are rabbits to see and if I'm lucky he will want to go to the cafe to buy me coffee. But buying it is the fun bit for him. I'm not always given time to drink it. After going to the playground and having some time on the swings we do some food shopping. He likes to help by sharing carrying the basket. A mixed blessing, as I've still got to carry the other half and negotiate the aisles with a heavily-laden buggy (you have to carry so much stuff because of what is needed for the trachy, in addition to the normal rubbish that kids need at this age).

On the way home, if we are lucky, we go to auntie's house and see the pandas. He will make me coffee and auntie tea. He will bounce on the sofa and then want to play with the alarm clock and be on auntie's bed.

We then spend the afternoon with Mummy playing in the kitchen or watching DVDs.

Sunday is my lie in. The wife takes the boy to the local market to buy food. He loves going there and knows the sausage man and the bread man. When he gets back, he proudly shows me what they've bought as he unpacks the shopping. The afternoon is spent much like the previous one.

Bit long winded this post but I want to record how it is now in case it changes in future.