Friday, September 23, 2011

We will not relent. And neither will the bullies.

I left the house late, heading for Chicago for my mom's birthday celebration, and read my dad's email as I gassed (ethanoled?) the car.  Big guns drawn.  I simultaneously felt relieved, and gripped with anxiety. 

An hour out from Amy's house, I called her to let her know her pickup time.  Cell phone off.  Called the house.  "Amy's in group, can I take a message."  What kind of group? I felt SCARED.  Nervous that someone was messing with her.   Asking her to explain herself, accusing her of lying or telling stories.  When I arrived there were three cars in addition to the van in the driveway.  I felt sick.  I stood outside shaking I called my dad for a pep talk, terrified I was about to face House Head and/or Residential Director.  Keep your head high!  Don't flinch, don't cower!  I walked in to a silent house, not even the Loud Lady was around.  A hug and quiet greeting from Sweet Lady.  A staff member in the kitchen told me Amy was in her room.  I cringe as I walk down the hall.  I round the corner, and....

NOTHING.  No doomsday.  Amy is on her cell phone, arranging her home care for the coming weekend.

When mom died, she took over certain aspects mom used to handle.  We still arrange PACE Paratransit for her because, man, that service might be for the disabled, but booking it successfully and understanding the rules takes a freakin degree.  But Amy arranges her home care, calling the people near Mom's house who used to provide her care to see if she can book them to get her up in the morning.  When I walked in, Amy had just called one of their mom's.  Girl knows how to get things done.  I love it.

We load into Blackberry Pearl.  God, I love this van.  The fold out ramp is so freaking INSTANT.  No slow hydraulics.  Amy rolls in, surrounded by the heaping piles of stuff from our house headed to the garage sale.  I'm climbing her wheelchair and garage sale debris like a jungle gym in order to get her manual tie-downs secured (Q'straints.  Used to have EZ lock -- so much easeir, but the base on the chair was always getting hung up in doorways, and it's expensive).   Whenever I break a sweat, it is a cue for Amy to start talking about SERIOUS business, and so she does, and I'm lightly sweating and heavily cursing, hanging upside down, pinching my finger, getting her strapped in tight whiile pleading with her to lay off the stressballs for three minutes till we are at least on the road.  Ahh, family.  I love it.

We had a great dinner with our amazing aunt and uncle who have adopted us and let us in to the lives and home, with our favorite cousin (yeah, I play favorites), and my mom's late best friend's son and his partner.  It was the perfect birthday party.  The perfect people.  The right amount of celebration of Mom and the right about of distraction from the heaviness of the day.  And you know it's going to be a good time when Amy's chair pulls gracefully up to the table with no gap! 

We drove home singing to the radio.  In the driveway, Amy recorded a thank you message to Dad, and then we recorded ourselves singing and giggling, since we had a fancy phone and a few minutes to spare (Amy had been told she had to by home by 10 if she wanted a shower).  9:40, in the door.  Hugged my girl, told her to call me if she needed me, and headed home. 

I pulled into the driveway of Mom's dark and half empty house with beer and flowers to celebrate mom alone, and my phone rang.

Amy was beside herself.  She wasn't given a shower, and didn't know if she's get one in the morning.  Between that, and it being her mother's birthday, she was having a lot of anxiety and requested her take-as-needed meds, and was asked "did you have any alchohol?", an odd question, as Amy doesn't drink, but Amy, being Amy, answered truthfully.  Yes.  She had been given an inch of margarita in a glass, which she had tasted and refused to drink, practically a family tradition at this point.  Well, that's done.  No anxiety relief and I'm KICKING myself for giving her even that tiniest drink, since it means they won't give her her meds.  I don't get into it with the girl, but the whole reason you wouldn't drink on that med is that you'd get really intoxicated really fast, and well, Amy had less than 1/8 of a serving of alcohol, as she can't drive or walk, presents no real hazard, but that's an issue for the long haul, not for 11 pm with a caretaker who DOES NOT GIVE A SHIT.  I try to call her back half an hour later to see if she's feeling better, but she doesn't answer.

I'm up till 3 am.  Laying in my mom's bed.  Thinking about my mom.  Crying about my mom.

Next day, phone call from Amy.  She vomited last night, to which her caretaker, the HOUSE MANAGER said to her "Are you playing games with me?"  Yeah, it's all about you, lady.  Amy, who has almost no control over her body is vomiting on her self in order to mess with you. 

Amy asked to call me.  She was upset.  House Manager said no, it was after midnight.

SCREEEEECH.  Amy is a 24 year old woman.  She is her own guardian.  She is in her own home.  It's HER PHONE.  Put the god damn phone in her hand and STEP OFF. 

Do I want Amy calling me in the middle of the night?  None of her damn business.  That's between Amy and I, and Amy has the right to call whoever the hell she wants at whatever godforesaken hour of the day or night she wants, just like everybody else.

And the answer is yes.  Amy calls me all the time.  ALL THE TIME, and sometimes it's overwhelming, but if she needs me, I want her to call me.  Anytime.  Always.


This afternoon was spent on the phone with the Office of the Inspector General, answering questions regarding the allegation of neglect and abuse my dad filed on behalf of Amy.

Dad spent hours on the phone, learning the laws of the land and how funding transfer works.  In addition to breach of contract and the fact that Amy DID give 30 days notice, the notice requirement is a violation of... uhh.. well, this was Dad's research.

Tonight, I'm lying on the fold out couch at my aunt and uncles, sorting though old emails to forward to the investigator, at his request, to help him become more familiar with the situation, while my mom's grandfather clock chimes downstairs.  


Miss you, Momma. 


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