The spell of unseasonably warm, fine, settled weather continues, and all of us in the family are in buoyant mood. The clocks have gone forward, the evenings lengthen, and we are all tricked into imagining that it is summer already.
I spend the long warm late afternoons clearing up the garden after the ravages of winter. It is a bit too late for some of the garden - I find a spectacular stand of nettles where I'm sure I left something more decorative - the whole garden is cheerfully reverting to nature. (There is not much I can do about it when Julie is at home because, even though she likes gardening in theory, between you and me she is not very keen on the practice. How many teenagers are?) Meanwhile, Joe is contemplating his bike again, and optimistically sets up the barbecue in the garden. Julie's brother Duncan takes advantage of the long evenings to visit friends, and spends so much time walking between villages that his winter pallor is already giving way to colour. He will be brown as a berry before summer starts at this rate. His calorie intake shoots up with all this activity, and I have to restock the fridge twice a week.
Julie is also doing well: her general mood seems very good. When she phones home we have long, chatty conversations, a far cry from the silent phone calls of a couple of weeks ago. Home leave last weekend was pretty successful all round, and we are planning more of the same next weekend.
Yet at the same time I still get regular phone calls from staff to report "incidents". Perhaps once every other day she makes a futile attempt to injure herself, and this is always recorded as an incident. There are whole lists of these attempts on the weekly reports, or handed out at CPA meetings, each summarised in a terse two or three words and carefully dated. Very demoralising reading they make too; Julie cannot bear to see them. The hospital has a rather odd policy of phoning parents or carers fairly soon after anything defined as an incident. It seems odd to us that they single them out from the mass of other observations that they make on patients every day. They don't phone us, for example, if she reports feeling low, or refuses to take part in a planned activity. Nor do they phone us if she successfully copes with a stressful situation, or has a good therapy session.
Picking out the more extreme and flamboyant negative behaviours can give a heavily distorted picture of what is going on. Last year, our only contact with Julie's primary nurse for long stretches of time would be regular phone calls relating one incident after another. This was during a period of time when Julie was rarely allowed out of the hospital because of the perceived risk, so our own access to her was limited. This gave us the horrible impression that Julie was constantly and heart-breakingly desperate. Read out baldly down the phone, some of these incidents sound more horrifying than they are in practice: there is a world of difference between a really serious attempt to hang yourself, and a half-baked scramble to tie a dressing-gown cord round your neck before staff catch you, but they will get reported in much the same words. The distress caused to family can be immeasurable, especially if the phone call comes late at night.
This year, her new primary nurse Sophie is much more proactive about giving us news, taking advantage of our frequent phone calls to Julie to fill us in on general news for the day. This is one reason why, although Sophie is still obliged to phone through regularly to report incidents to us, we can see them against a backdrop that is, in the main, positive and improving. We know that even when we are not there, Julie looks after herself, is very involved in ward activities, is studying a little in school, and reports feeling quite upbeat. This is what we see ourselves when we meet her, and how it sounds when we talk to her. The string of attempts to injure herself seems to bear little relationship to this picture - it is almost as if it has a pattern and rhythm of its own. It means, however, that she is forced to endure yet another week of intense one-to-one supervision. This is a pity, but probably a fair reflection of the level of support she still needs.