Thursday, December 31, 2009


What a horrible word. I will have to say this word has to be my biggest pet peeve.
Three years ago my now 5 year old daughter was diagnosed with a Neurodevelopmental Disorder called Rett Syndrome. It quite suddenly robbed her of her ability to speak,use her hands and she lost almost every kill she had acquired up to that point.
Why? There is a gene on your x chromosome that controls your every movement and every thought. It's the regulatory gene for all other genes in your body. This gene doesn't kick on until you start walking,talking,eating and running. When a toddler really starts to become independent. If this gene if faulty.....then everything stops working.
The things my daughter can do take her a long long time. She has trouble eating,sleeping,digesting,breathing. She cannot speak. The list goes on and on
She looks completely normal. In fact..she's beautiful
In today's world there are many many people with syndromes and disorders that limit them. That keep them from being able to function in a typical or normal capacity. All these people have friends and family all around you.
1 in 100 people have some form of autism
Close to a million people in the US have Cerebral Palsy
1 in 800 people have Down Syndrome
There are hundreds of Neurological diseases or syndromes out there. Some genetic some by injury.
Is this funny? A joke?
In the last my daughter grows and it is more and more apparent that she is not typical I have become especially sensitive to this term.
Almost every time I go to a restaurant or a store of any kind I hear this word outloud used as slang. Used as a description for stupid,ignorant,ugly,silly or something non acceptable.
Over the summer my family was at an Applebees sitted next to a girl who was my daughters age. She was celebrating her birthday with her family. Little girls are hard for me. To see a typical child be able to walk and talk and sing and tell jokes makes my heart ache for what could of been.
At some point during dinner she was showing off and being silly. Something I would give anything to see my daughter do. She told a joke that made no sense and her mother announced that she was retarded and everyone laughed hysterically.
I was so sick I became physically ill and had to leave as I was sobbing.
In the parking lot I started to hyperventilate and had a panic attack. My husband walked back into the restaurant and pulled the father aside and told him how this word and their use of it had his wife in such a state that she was a mess in the parking lot. They apologized and seemed confused as to why we would even say anything to them.
Two different times at Walmart this week I have had to say something to someone. The first was in customer service when I heard that the line was retarded and walmart people are retarded.
Two days later in the movie aisle I turned the corner and saw a teenager with her father looking at movies where they passes the R word back and forth 6 times describing the movies and each other.
To me and to many many families like ours this is the same as using the N word,Chink,Spick or the F word in public or at all. It makes the person using it seem insensitive,moronic and completely lacking of any manners or social skills.
There is a law before congress to ban this term. It's called Rosa's law. You can read the story here.
There is also a very touching speech by a young man with a child who is challenged to to an illness. You can view this very moving speech below. Please educate yourself and show some empathy for others.

Monday, December 28, 2009


We had an absolutely wonderful Christmas. Last year we were not able to get much for the kids and nothing for each other as usual. In early November a lady called to tell us she knew we wouldn't ask or stand in line anywhere, even though we more than qualify for assistance so she was going to get us adopted. I tried to tell her no but she told me where to put my pride and said that she was going to do it anyway...I have to say Thank you Cindy! On Christmas Eve 2 gentlemen and a little girl came and knocked around noon. They had 2 bags full of gifts and they were more than generous with us. I don't know who they were or what she told them but they really went all out. I do have to say that I was especially touched that they brought the little girl. She was obviously overwhelmed and a little shocked by Abby I think. I was so touched by the lessons they are teaching her. It is invaluable and something many people never learn. It really is. Showing her that there are people so much worse off than she is is teaching her empathy and the lesson that she should be charitable and never feel entitled whether she knows it now or not. I think that brought tears to my eyes more than anything else. And we were not the only family they did this for. They had several more deliveries to make. I hope they have some idea how thankful we are for people like them.Daddy helping Abby open some of the gifts our Angels got for her. She's not able to use her hands or speak but the look on her face says it allKyler is opening the Wii they got for him and you can tell he was so confused like he couldn't believe it.Abby's shock at the Dora doll. We got his one. We didn't get pictures of her kissing her but she did after a few minutes. She loves her.Below Abby is playing kissy face with her brother. She is pretty rough about it and he gets slapped alot but he loves her

This a pic of Abby with her private duty nurse. We love her. She is such a help to us.

Abby with all the bling she got. She is such a little fashionista!

This is our girl after she opened the box of hair bows our Angles got her. Now if only all kids could be made this happy over a box of hair bows!!!

Cheese! I'm spoiled rotten!

We dont put up a tree for safety reasons but she still loves looking at them. This was a neighbors tree. She was so excited she was squealing and biting herself.

Saturday, December 26, 2009

Preschool holiday party

This posting is a bit overdue. Abby had her holiday party ather last year of preschool and had a ball! She was a little overwhelmed at so many people being there but she had a great time and of course her bff Madison watched out for her at all timesAbby with her OT above making play doe..yikes Hey Mommy I'm making Play Doe!

Abby with her Madison and some red and white guy. Who cares? Madison is here!

Abby's teacher for her 1st 2 years of preschool came to visit and help out and Abby was thrilled!!
Christmas pics coming soon!!!

Thursday, December 17, 2009

Peek a boo!!!!

Abby playing possumIf I cover my cant see me
Peek A Boo!!!!
I know I said I would get better about keeping up the blog. We have just been terribly busy. With the outside therapies and now that the computer is up in the bedroom I just plain forget. I will do better.
Abby is doing pretty good lately. We are even bolus feeding her in the morning and afternoon and she is growing like a weed. Last year she was the same weight she was at 18 months old. 26 pounds or so. She is running an average of 36-38 and is 44 inches tall!! Woo hoo. Thank GOD for the feeding tube!
We are discussing possibly getting her into hippo therapy...or horseback therapy in the spring. Her therapist really thinks she would gain alot of core strength from it. My problem is that I am scared to death of horses so I dont know how in the world I am going to put my baby on one! But I will if it will help her.
Please stop by and leave a comment,. Would love to know you were here!
More soon