Saturday, January 1, 2011

Happy New Year. Im back

Hello all.

The last month has been absolute insanity around here.

We had our trip to New York. I made new friends. I got to see my girl Kelley twice in a month and 3 times this fall after not seeing her for 20 years. So glad to have her back in my life.

I opened up a new can of worms at school since we learned that Abby can use an eye gaze device. A fight I dread but know I must do for her. We have another IEP meeting this next week due to my pain in the buttness..another thing I dread. The thought of sitting in a room full of people rolling their eyes at me while they feel so sad and think I am so pathetic for thinking my daughter is in there makes my heart ache and my stomach turn.

I don't know why I can't get it across to them. I know she is disabled. I know she is language impaired (Thanks for that one Ingrid.) I, in no way, think I have a Steven Hawkins in there. I do know I have a 6 year old little girl who is trapped in a body who's brain doesn't tell her body how or when to move. The spark doesn't fire. Doesn't mean the ignition isn't there. She has the starter. It just won't turn over and run the rest of her.

They know she looks at the answers. They know she makes choices with her eyes but insist she choose with her hands. Little twisted hands that cannot grasp or point. I don't know how to make them understand that she wants those little hands to work. That she still needs the therapy to try to get her brain to fire to her body. Weather or not it will ever work is any ones guess. She still needs the therapy to get those Neurons firing. We do however, need to give her tools she can use now. Just because she has no physical voice does not mean she cannot or does not have the right to communicate.

I think they only see the child who stares into their eyes...searching. Wondering why they can't hear what she is saying. She can hear it in her head. Why can't they?

They see a child who is clumbsy and tires easily. They see a child who is 6 years old and still walks like an infant who is taking her first steps. Sometimes I feel like I can jump up and down and scream and rant...and nobody hears me either. I can't imagine how it must be for our girls with Rett Syndrome.

Pray for us with this one. It hurts.

We had an incredible Christmas. Incredible. My children are spoiled and loved and we are so grateful.

On December 23rd Abby took unassisted steps. Since her g-tube surgery in 09 her walking skills have all but vanished. She will take a few back and forth steps within reach of her bench but nothing much outside of that. You have to hold her hand or sometimes her hand and her back and she will sometimes take you down with her. She seems more sure of herself. On the 23rd I had sat her on the couch because I was busy and quite frankly getting a little irritated with her neediness...don't judge..you don't live here. I took 3 steps away and bent over to pick up a toy and had her face in my butt. She had stood up off the couch and walked to me. Oh man. Incredible.

The next day I put her on the couch as I was preparing for Santa and grabbed the camera.......

3 comments:

Tuška said...

It´s great and incredible ... no! Abby is great. I´m so happy for her and for you!!! :o)

The MacDonald Family said...

YES!!! We LOVE you Abby, you are amazing! Oh, and I'm going to have to steal the "language impaired" line. :) So glad you all had a wonderful Christmas!

Dawn said...

I love the analogy of the ignition and sparks, etc. I might have to borrow that one! :) Good luck next week and I have no doubt that in the end you will get what you what for Abby, and what she deserves!