Saturday, August 27, 2011

First grade. First day

Today was Abby;s first day of first grade! I was so excited and so nervous at the same time. Like every other year we got her ready,took pics then followed her to school to take more pics. Seriously...every year.
I was a little upset to find that she didn't go to the first grade today until her special ed teacher explained that the typical kids need a few days to calm down and the teacher needs a few days to show them she is in charge before they bring a special kid in. Since Abby does get nervous around too many typical peers at once I calmed down.



Here is the Princess this AM getting ready for school(while being waited on hand and foot)

Ignoring Mommy with a grin while I was trying to get the waiting for the bus picture






Fresh off the bus playing sleepy



5 seconds later...Mommy says,"Who's my big first grader?"



Teacher sits on one side and plays and Abby plays back. Though this one was pretty cool!



Mrs B and the Princess




Abby with her student volunteer helper. Love those kids!



Classmate S



Classmate E


Mr I



Mr N and Miss L




My Boyfriend blowing me a kiss when I asked,"Who's my boyfriend?"

Abby with her massage therapist Angel after school






Stretch it out Woman!



Long day. Passed out. She's done!!

Friday, August 26, 2011

Back to School Night





Abby all pretty for back to school night
Abby with her Special Ed teacher




Friends




Abby meeting her first grade teacher



Abby being overly friendly. What? Not my kid. Lol!




I saved the best news for last. After causing the school and the AT quite a few headaches and hurt feelings I about fell on the floor when Mrs Jones told me that Abby would be having a Dynavox eye gaze system in her classroom. It's not hers but it's there for her to use. Still wish we could get one for her at home or a My Tobii but I am thrilled!!!! Besides fighting with the schools,..... not knowing what your child is telling you is the worst. At least she has a chance at school now. Thank you Karen and Morgan.
Here is a pic of a girl using the device. So so excited!!!!!





Wednesday, August 24, 2011

Road Trip

This past weekend me and Abby had to seriously get away so we took a road trip(small one) with a friend Look how happy Terri is to be out of her house!
Fountain where we stayed. Ho hum. Prettier in person
Kansas? Oklahoma? New Mexico?
Tee Pee/ Banquet hall. I thought it looked cool
Just 2 days away but we had a ball. Abby brings so much joy to everyone who comes in contact with her. Someday I will take pictures of that too!

Saturday, August 13, 2011

Time for me

Hey all,

Dont even know what Im gonna write here but I'll just give it a shot.

I'm exhausted. Not just tired right now exhausted but done to the bone,dead dog exhausted and need to make some life changes for me and my girl. Not everything I want can and will be done in a day but there'll are changes in the works.

Im starting with the little things. Shower,brush teeth,change clothes...everyday,,before I deal with anyone else.

Take naps..Kelly taught me that

Stop volunteering for everything or taking on what others wont because I can't stand anyone being dissapointed.

Making lists.

Planning.

Hoping.

I passed out on my front porch almost 2 weeks ago. Was out 12 minutes with poor stats. Looking at close to 8 grand in bills because I cant or don't sleep and have to everyone elses fixer.
It scared me.

I will not be any less of a friend, Mom,Rett friend,counselor,or question answer go to person. No more projects. No more spending money I dont have on maybe's.

Have to.

Sunday, August 7, 2011

Don't

Lately..almost a year now. I have been getting out more. Not on a daily basis but I travel when I have the opportunity . I take Abby with me whenever I can and I'd just like to make a few requests.

I promise you I wont be offended if you open that door for me. One day it was considered rude not to. Not that long ago.

Don't stare and whisper. I would so much rather you come up and ask me point blank what my daughters condition is then watch you stare till I see you then whisper to your friend.

When asking don't...ever...

ask me. "What's wrong with her." I promise I will embarrass you and you'll never do it again.

ask me,"What's her prognosis?" It's not something a stranger needs to know. If you want to educate yourself then take the info I give you and go home with it. Because what I hear is,"How long will she live?" and "Will she always be like THAT?"

Don't let your kids climb all over my daughter. She's not a jungle gym and can't defend herself. Don't make ME have to tell your children more than once.

My daughter is disabled. She is not ignorant. She is beautiful and she is sitting right there. She can hear you and she understands sign. Don't talk to her or about her as if she wasn't there.

Don't speak to her like she was a dog or a small baby. Coochie coochie coo...Who's a pretty girl? She's Seven, not TWO.

Don't ask others about her when I leave the room. I have disabled child parent hearing and trust me, I heard you. I hear everything. She hears you weather I am standing there or not.

She is my child just as yours is yours. My blood runs through her veins and my soul breaths for her. Do not be inconsiderate, cause I will knock you on your ass.

When I'm attending to my daughter I have no want or need for political conversation or gossip. When I am taking care of her nothing else matters so zip if for a minute would ya? You are the only one that enjoys the sound of your own voice.

Whew. Now that I got that out. Go on then..Best Wishes:)

Tuesday, August 2, 2011

Tah Dah!!!

Surprise! Abby got a haircut! After spending an entire 103 day in our van pulling over every few minutes to pull hair out of her eyes,nose and mouth I got home and chopped it! She loves it! Another horseless therapy. Working with the Speech path


Actually can get her to somewhat aim with the arm braces she's had since her diagnosis. We gave up on them after she would fling herself to the floor whenever we put them on. She is actually tolerating them for periods of work. Not all day though. Dont blame her.


This is called gimme that mouth wipe. She is so stinking cute!



Stretch it out baby girl. She was actually tolerating this softer bumpy ball for tummy time. Just gotta find one!

Peace and Love

Terri and Abby

Monday, August 1, 2011

Momma never said there'd be days like this

A nurse did though. Once in the early days after our final diagnosis.

I can't tell you which doctor or specialist office she was in. I just remember her saying,"My heart goes out to you. I too had children 12 years apart and my youngest has cerebral palsy. It's a whole different world. It's gonna hurt more often than not and your gonna have to smile right through it. It's gonna make you stronger than you ever knew you could be...and weaker than anyone will ever see. I feel for you dear."

Weird that I remember every word but not who she was or which office. I was in a total daze. The memories come and go.

Around the same time a mother in the Rett world also said....,"This is gonna suck. This will be the hardest thing you've ever done. Day after day. You are going to have to CHOOSE to be happy. There's no other way. There's no way you'll survive it and you have to be there for her. You will be her everything.'

That's a big no shit.

Most days I trudge through. Fighting for others. Raising money for a number of causes. Doing research,writing,data entry..advocating..always advocating.

I remember asking my friend Shay in the early days how she did it. How did she take care of Miss Lyss all day and all night long and still be everything for everyone,fund raise and advocate. She didn't hesitate,"I have to. For this to make sense to me. To keep me from curling up in a ball and wanting to die. I HAVE to."

Simple answer and exactly right. It's like I have no choice. There are days where I just want to take care of Abby and pretend we're just a little different. But there's nothing in me that can tell anyone no. Nothing in me that doesn't go above and beyond what I was asked to do.

Why? Cause I'm a fixer. Always have been. I used to be a workaholic. One of those employee of the month every month..Manager of the year types. I did my job and everyone else's too. Everyone knew if there was something they didn't have time to do, couldn't do or didn't know how to do it,I would find a way. Seriously. I can give references.

I can't fix this for me. I can't fix this for Abby. But I can be there for others. I can raise money for research and awareness in hopes that THAT will one day fix it. Any part of it. If that promised cure gave her anything. Her voice...words...her hands...her strength,,her breath.

I have been up for going on the 3rd day. I'm exhausted. So much to do. Don't know how sometimes anymore.

Off I go to smile right through it.