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I guess really the thing is, now she's down here, my love, my darling, my precious first-born daughter, and I see her all the time, there's nowhere to hide from the fact that her life hangs by a thread. Not literally, not today, but that can/might/will change at any time. She had the feeding tube fitted in November 2014 and we were warned that it might get infected or clogged up, that it would get infected or clogged up at some point, they don't last forever, and it would need replacing and we would have to have the quality of life discussion again. I talked to R, my counsellor about this and he's just appalled that a parent has to make this kind of decision about their child's life or death, but who else is going to make it? It seems OK, the feeding tube, but the catheter is causing endless problems, not of a life-threatening nature, but reminding me how fragile things are, how quickly they can go wrong. I have no idea what she would want. I can't bear to pursue it as a line of thought and it's not a question I want to ask with our limited means of communicating - can you imagine, honestly it'd be like something out of some goddawful fucking sketch show, with the mother repeatedly asking the daughter if she wants to carry on living or not, rephrasing it, slowly, clearly, offering a hand for each option, touch one, or look at one to tell me what you want. For fuck's sake.

So I'm currently overwhelmed by that, but I expect it'll ebb away, as a person cannot sustain this level of agitation - there are peaks and troughs - this is a peak. Peak agitation. But I'm still here, she's still here. Sentence punctuation's gone for a shit and it's gone 2am, but we're all still here.

I am grateful for:

1. Art group, lovely, lovely art group;

2. Getting letters from two of my mental health professionals for the benefits thing, one of whom shall remain nameless as their report started, "Anna was adopted at 15 months" which I wasn't for fuck's sake. They don't take notes, "to be more present" but where's the benefit when you get shit wrong? That wasn't the only big factual error either, but I'll deal with that later, for now I'm glad to have a letter saying that I'm mad as a box of frogs.

3. Just remembering there's a Gu key lime pie in the fridge which I am going to eat right now.

Sweet dreams, dear peeps.



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