Thursday, August 18, 2011


These days, I don't sleep well.  I try, but when I close my eyes, it's like I'm driving 100 mph through a field of memories, worries, things I need to do, and deep sadness.  I wear earplugs, and cover my face with a pillow and hope I'll fall asleep, but drowing out the outside world doesn't do it.  I'll finally fall asleep between 1 and 4.  Sometimes I awaken again at six am, unable to sleep, only to finally fall asleep just as a I should be getting up.

A common theme, when I'm in that half asleep, half waking dream state, is the pleading with the universe.  I WILL DO ANYTHING to have my mom back.  ANYTHING.  And I want it so bad that even though I know it's not a possibility, not even in a small way or an aftererlife kind of way, as I am not a believer, I still mean it when I plead.  Anything.

The other day, as I made my most recent plea, a thought came to me, in my moms voice. You'll do anything for me.  Take care of your sister.  But that's not what I meant, and not what I want, that doesn't get me you back!  Tough shit.  Take care of your sister.  It's the one thing I care about.

This sucks.  Completely sucks.  Part of the time I make organized lists and chip away at them, trying to get a grasp on all things Amy, and working not just to maintain her life, but to improve her life, as my mom did.   The other part of the time I stomp around, so angry, as though there's any choice to but to take care of her.  I don't want to!  She's not my daughter!  I didn't sign up for this!  What about MY life? 

Amy is 24, the baby of the family, born eight weeks early.  She has Cerebral Palsy, Epilepsy, and is legally blind (though she can see).  She lives in an assisted living facility in Aurora with a half dozen ladies far from peers.  Theoretically, they should be handling most aspects of Amy's care, but the fact is, they don't.   Sometimes they forget, sometimes they just aren't operating in a timely fashion, and sometimes, they just don't what they should be doing.    

Amy longs for a social life and friends, and tells me that since moving into the facility feels less independent that she did living at home.  Her weekends at the house are lonely and idle, and that means we get together at least every weekend.  

Amy is reliant on others for every aspect of her day to life and care, but she's not stupid, or nearly as developmentally handicapped as people think she is.  You can imagine the conflicting feelings that come from being completely reliant on others for your care, being grateful for that care, but having so many of those same people think you are less than a whole person intellectually or don't speak with your own voice.  

In the year and a half Amy's been there she's been beaten down, no longer speaking up for herself or voicing her preferences.  She now communicates her concerns via her family members rather than directly to staff who tend to disregard her, and feels like as a consequence her caretakers look at her as a tattletale.

I want to make things better for her.  I want her to have other meaningful relationships and fulfilling experience.  It totally sucks that her family are the only people who give her that right now, and I want that to change, and not just for my own sanity.  Amy needs it, too.  

And what about my life?  I don't know.  In a span of just a few weeks, mom died, I finished grad school, and finished my job.  I need to rise up and find my personal direction, but I feel so encumbered right now.  I commend the people of the world who take care of others and who also manage to have their own shit together.  Right now, I'm not doing any better at my mom at this.  And yes, I also would like to slap me for all the pep talks I used to give her. 


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