Tuesday, September 27, 2011


To the New House Head:
Amy is very excited about her visit. 

She wants to know how she will go to the bathroom at your house and at the workshop, and how she'll shower at your house.  I told her I'd contact you.  If needed we can send her toilet/shower chair.  Let me know. 

Amy is nervous.  I'm helping her keep the nerves on the excited side and not the scared side, but it's a lot of changes coming fast. 

The biggest thing is Amy worries about is what her position at the workshop will be like, and hopes both (or is it 3) workshops will be considered for her, even if she can visit them both/all on her visit.  I've told her that her experience on her visit won't tell her what exactly she'll be doing, that she's just getting a taste of the new environment.  She really wants to develop her skills, and would like to use a computer in her job in the future.  Amy has strong mental skills, but limited motor skills.  Presently, she counts nails, and moves then from one container into smaller containers.  She takes her job really seriously and routinely tells me she doesn't want to miss work, even though she makes almost nothing.  Rambling, but wanted to let you know what she's worrying about in order to help conversation.  

Thank you!

And then another, seconds later. 
Another question.  Could Amy possibly also stay Saturday night?  What it gets down to is that Amy is scared of the woman that takes care of her on Saturday night and doesn't like to be at the house on the weekend -- mostly idle time.  I understand if this doesn't work, and I also realize that Amy might be really fatigued by then and maybe ready to go "home", but I wanted to explore this. 

Amy is visiting the new house on the 29th - 1st, and after that they will aim to move her in as soon as possible.  We hope it will be by the following weekend, so that Amy will never spend another weekend in that place.

I'm gone both of these weekends for the weddings of some of my most favorite people in the world.  I am sad not to be available to do this with her, and nervous.  Nervous she'll be upset, insconsolable, and calling me on the phone telling me a sitaution we could have averted, or that at least if I'd been around I'd have a better sense of the situation.

I know I complain and say I want Amy to learn to do things without me, and I do.  But I also don't want to force anything.  I want to be there for her when she needs me.  What I really want is for her to have a full and positive life where she needs me less because her experiences are less negative and because she has lots of other people in her life. 

She has a doctor's appointment on the 28th, and House Head, the big bully, the woman who accuses Amy of being a liar, will be taking her.  What a horrible, uncomfortable day.  Not to be a pessimist, but c'mon.  House Head will say cryptic things to Amy, be generally short, and rush Amy along.  They will sit in silence in the car while Amy plays their interactions over and over in her head, worrying about the next shitty thing is going to be said to her.  She'll call me upset about the day, and nervous for her trip the next day.  I'm almost tempted to cancel the appointment just to avoid this almost guaranteed bad experience that could stir up anxiety.

I don't know if I'll keep posting the full emails once Amy's in her new house.  I like to think she'll move in to her new house, and I won't NEED to write about it.  It will be so much better.  Right now, it's really cathartic.  Sharing it helps me not completely freak out.  I enjoy other people saying to me, hey, read your blog, wtf?  It helps.  And maybe it's helpful to someone else out there fighting with their loved ones caretakers.  Maybe this will be helpful for me to look back on.  We'll see.

Most of all, this is personal business of Amy's.  Amy is really proud of her life and the strides she's making, and proud to have a family who fights along side her.  I need to talk to her about this.  She knows what I write, but does she want her name attached to it?  We'll see. 


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