Waiting for the Unknown

If I could characterize our family situation at the moment in one word it would be "waiting".  Our daughter Julie is still sick, there is nothing practical that we can do, there are huge unanswered questions about the future, and all that we can do is wait and see what happens next.  It is as if we are part of a huge soap opera whose plot is entirely in the hands of strangers - at the moment our roles are bit parts, with no lines, but we have no idea if next year or the year after next we will suddenly be expected to become heroic, or villainous, stalwart or cowardly.

It is hard to wait like this: we have spent the whole of the last year learning to wait, and still it eludes us.  People like us are used to planning our lives, saving, hedging, insuring, trained to take decisions, to make judgements.  Both Joe and I are used to being in control of our lives: seizing the day.  We chose to have children, we agonized over childcare, we chose their schools, we thought about what they should watch on TV.  We did not choose to have a child who was ill, but when she was ill, we assumed that our support, our steadfastness, our love, would make a difference.  What a shock to find that it does not make a difference: that we can't defeat this.  The only person who can fight the monster is Julie, and she is only fifteen years old.

The situation is, roughly, as follows: Julie is largely functioning quite well inside the very secure and structured environment of the hospital.  Outside the hospital, where she has now lived for over 9 months, she often does not function very well.  She sometimes functions quite poorly, in fact, not able to handle very small stressors like sudden noises, or boredom.  Everyone - and there is a sizeable team involved now - has tried one thing after another.  We are waiting at the moment to see if the latest round of input - new medication, and a whole barage of different therapies - will make a difference.  It may take weeks or months before we can see a measurable difference.

As far as I can see, there is not even a practical means of taking the measurement: it will have to be a mixture of the usual inaccurate and patchy records kept by various members of staff who are involved with her, and the hunch of her consultant.  In the past we know this method has failed - I can still remember the confidence with which they packed her off to work as a volunteer in a charity shop.  "She'll never self-harm there!" they said; an assertion which lasted about 90 minutes until they got her emergency phone call.