annanotbob2's Diaryland Diary ----------------------------------------------------------------------------------------- I think I'm going back I'm going to ED's tomorrow. This time before I go is always the hardest - I'm scared of how she'll be, of how I'll be. Being scared of the immediate future has the ghost of the longer future hovering around it and none of us want to go there. There be dragons. One day at a time. I'm scared of this appointment and how I will handle it. Whatever it is. I've been doing a bit of Problem Solving in my head since writing that last para. About which bits I'm scared of and what's the worst that can happen (without Catastrophising) and what will I do? The worst is that I start to lose it, to freak out in any of my various manners, but if so I will have to take time out and go and breathe somewhere quiet. Pull over to the side of the road if I'm driving and tell Son what I'm doing and he'll be cool. I cannot imagine what kind of interaction this is going to be, with whatever kind of expert we are booked in with. But hope is the next dragon - the possibility that someone can help us maximise whatever potential ED holds for the best possible life. I know enough about language and psychology and neuroscience and exhaustion to know that there must be useful and harmful things that we can do when interacting with ED. Like with people who have Asperger's or autism - if you go about it in the right way you can get on fine or you can quite inadvertently make them feel terrible. I'm trying to feel my way towards what works best, especially after her enjoyment of Radio 4 last week. She is still capable of insightful comments that seem to spring out of nowhere, which shows that that part of her brain is still there, but either she can't often access it or she needs a lot of time to formulate a statement. But direct conversation exhausts her very quickly and her short term memory is idiosyncratic to say the least. She may live for a long time - we have to plan for that. Moments of joy - that's all any of us can hope for (which is not to say there's anything better) and that's what I'm after for my daughter. Today I am grateful for: a blog to help me work out what I'm thinking; my kids; finding a pattern for the previous - next |
||||||