I just have to say that my partner, Joe, has been a real tower of strength these last few days. It was he who insisted that we brought Julie home on Sunday afternoon, even though the visit on Saturday hadn't really worked out. He has a few days off work this week, and if it had been up to him, we would have had her home every weekday too: even though it meant he would have to drive an hour to pick her up and another hour to take her back. It was only because they had organized so much therapy for her at the hospital that we didn't go ahead with this plan. But Joe still made it over to the hospital this evening to keep her company.
Privately, I was so pleased that I could have her back on Sunday. It had been Joe after all who cracked up and got angry when she self-harmed, knowing that he was going to have to tow her back to A&E and endure another 4-hour wait. It's not a nice feeling waiting there, knowing that some people will criticise your daughter for taking up time that could be spent on babies with meningitis. But on the Sunday morning, it was me who wobbled at first, feeling that I couldn't cope with another attempt at a home visit. If it hadn't been for Joe's insistence that we had to keep getting back in the saddle, I would never have dared bring her back. We were all pretty shakey, and I never left her side for a moment, but we managed a couple of hours. It was a sort of success and that, after all, is the main thing.
And Joe has even volunteered to do the CPA meeting this week on his own, to give me a break. According to my excellent little Rethink guide, "Caring and Coping", CPA stands for Care Programme Approach, though hardly anyone seems to know this (even amongst the staff!). In the early days of Julie's treatment we were pretty keen to attend the CPA meetings, which are held every six weeks or so. Most of the people involved in Julie's treatment and care - now a fairly long list of people - get around a table with us and summarize the past six weeks and plan for the next. It was exciting at first to see all these people who we had heard about but not always met, and to bring in people from outside - from her mainstream school, for example. But they can be very daunting meetings too: so many people, and so little opportunity to thrash things out. They have to fit into an hour, so it can be frustrating hearing some things for the first time, or knowing that something that has been stated as fact is not quite right. All through the last meeting I felt terribly anxious, because everyone else spouted on about how much wonderful progress Julie had been making, while I knew that she was falling apart and relapsing. It's just not the place to have a proper discussion about this!
So I am grateful to Joe for volunteering to take the rap for us this time. There's not much we can contribute this time as parents - her relapse is now plain for all to see, and we need the professionals to work out how to get her back to a better place. I guess I'm a bit of a coward these days, and I'd rather not have to hear them summarizing the history of the relapse that we've been living through.
Actually Julie's word for the relapse is "blip", which is much better.
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