So Far, So Good

We are now back to the point we reached last May, before the last crisis. Julie has managed two whole extended weekends at home (Friday to Monday), and the balance is slowly tipping back towards her spending more time at home than in the hospital unit. The nursing staff, the doctors, the various therapists and the outreach team are slowly fading out of our lives once again. Bag after bag of clothes, books and posters are making their way back home again, having already shuttled backwards and forwards during the previous ups-and-downs of her illness.

Just as we found back in May there are the occasional rumbles of trouble - uneasy moods, difficulty settling, and the occasional alarm. But unlike last time, so far each of these problems has dissipated before it has begun to grow. We go out for a walk, there turns out to be something really good on the tele, or Julie just needs a good night's sleep. Perhaps we are learning how to resolve some of these difficulties ourselves, perhaps Julie is just developing out of them. Of course, now that we have experienced a reversal once, we do know that it is also possible that the problems might overwhelm her - and us - again. The longer the recovery lasts, the better the odds, but we no longer think in simple terms of a U-shaped illness. Just like the economy, double dips are possible - shares can go down as well as up, etc etc.

Julie and I have drawn up a list of milestones we hope she will meet in the future. The list starts with things we think she can probably do soon (occupy herself on her own for an hour at home) and end with things that seem hopeful but distant (go out to a concert with a friend). We have passed a lot of milestones recently, and there is no rush to pass any more, but it would be nice to feel that we were recognising the next few as we pass them. It is also a way of reminding our galaxy of helpers how far there still is to go! When Julie can walk home from school alone, or be left for an hour or two alone in the house, she will start to become truly independent, and life will improve for all of us. It is hard for me to have to explain at work why I have to pick a 15-year-old up from the school gate, or to a neighbour why I cannot pop round for a chat in the evening. It is hard for her brother to be told that he cannot have a friend round after school, or get a lift to scouts.