Monday, January 24, 2011

It's ok. Kinda. ok not

I guess it wasn't really fair for those that keep up with Abby and myself to post such a vague stay tuned like I did the other day. I have received many emails.

In the Rett world...a place I dont want to live in anymore, we Moms have what we comically refer to as quarterly breakdowns. Everything is one step forward, 3 or 4 back.

I think after the high of New York and everything we learned there then coming home...and she still has Rett Syndrome. Every day. It never goes away. I advocate all day long every single day..and she still can't talk. She is still weak. She still can't breath right. 4 years ago they promised our cure. 4 short months after her diagnosis when I was still in the throws of the greatest pain in my life we had good news. They were gonna fix her.....4 years later and I am raising a 6 year old toddler.

I am exhausted. EXHAUSTED! Not just physically. I am mentally and spiritually losing it. I had a friend tell me the other day that she missed Terri. She told me that every time there is a set back or a disappointment that part of me goes away and that's she's afraid that some time soon there wont be any of me left in there. Just a smiling robot that gives meds and changes diapers. It was a blow. A hard one to take. Cause it's true. And she is one of the few people in the world brave enough to tell me stuff like that.

I just feel like I have to do something! But I dont know what. 3 years without a car is about half of it. I am stuck in this house...buttwiping robot that I am. I dont get out for anything and the last few weeks I cant even go to church because Abby's Dad has our only vehicle and is on call in winter weather.

I found out in some states they have what's called an income waiver for Medicaid. Those would be the states more concerned with childrens health than building bridges in the same place every few years. Or giving themselves raises and driving Bentleys. If I could find proper care and proper work hours I could take care of my family again. I spent too many years as a HR and Office manager to be a diaper manager. It's boring and slow and I spend 9 hours a day without her. I should be able to work.

Our housing situation is needing a change. I dont like change. After the end of an average day it is back breaking for me to carry her upstairs to the bath and then to bed. I just wanna lay on her floor when I'm done. Seriously we need a one floor house or duplex. Cant stand to have people above me. Considering we barely get by on the cheap rent we pay now I see no way to rectify it and it frustrates me. Another thing I cant fix. We pay 600 a month with gas,water and trash paid. How in the world could we find something like that?

Seriously, anyone know?

I have other emotional things going on that I cant share. Things I need to get me head and heart around. My son will graduate and leave soon...ok he says he's leaving. Who can blame him? But there's more

At some point I need to MAKE things get better...I just dont know how,where to start. Not just Abby but our whole way of life needs to change and I may need to hurt people to make that happen and I cant bear it. Yelling ,screaming and stomping my feet for years has gotten me no where. Action needs to come soon...or the lottery...or a miracle..or to find out this was just a really really long really bad dream.

1 comment:

Nikki said...

I will delurk from the shadows here. Your honesty really touches my heart. I am saying prayers for you right now. Abby is BEAUTIFUL!