The Things You Leave Behind

I had a colleague in the house the other day for a meeting.  We are a similar age and get on well, but he has never visited before, so inevitably in the coffee break he took an interest in the books and other things that crowd our shelves.  He was interested in Joe's jazz collection, and I started to list off the concerts we'd been to together - and then of course I stopped.  I realized with a sudden jolt that Joe and I have scarcely been out together in more than two years.  In all that time, everything that we have done we have had to do separately, while the other one looked after Julie.  Joe has been to jazz concerts in those two years, but not with me, and I have been out to visit friends, but never with him.  I can still list the jazz concerts he has been to, but I shared none of them with him.  We have even begun to take our holidays separately, sometimes taking children, sometimes alone.

In the last two years I can think of exactly two occasions when Joe and I snatched a short evening out together, while the hospital or a friend looked after Julie.  Otherwise, our life as a couple boils down to watching television together on a Friday or Saturday night when the kids have gone to bed.  Even these “staying in dates” don’t always work out as planned – there is a crisis, or Julie’s brother needs to be picked up, or we are just too plain exhausted. Planning anything more elaborate is impossible, because you know that if you buy tickets, or make a reservation, then as surely as night follows day, sudden chaos will erupt and sweep your plans away with it.

This is not a "look at poor me" post: most of the time I no longer feel the loss of these things, there is no longer any particular pain associated with them.  In the first few months of Julie's illness, losing out on time spent together as a couple was one of the hardest things to bear, but over time you stop missing things as they fade from your memory.  You hang on to what you have, and you make the most of sharing a laugh over a late-night television show, or chatting over dinner.  The surprise was that for a few moments - chatting to someone outside our normal daily situation - I remembered what it had been like to share these experiences with Joe, going to concerts together and talking about them afterwards.  For a few moments I was talking as if I was just like anyone else.

Serious illness of a child takes a huge toll on families: marriages do fail, siblings do grow up resentful. It is hard to understand why this should be unless you are going through it yourself. Even when you are all coping very well - perhaps particularly when you are coping very well - it is a useful exercise to look back and remind yourself of the things that you have had to leave behind.  They do not become less important because you cannot do them now.