Wednesday, March 24, 2010

Road Trip to Chicago

This last week we partially lost our minds and took a road trip to Chicago. My 17 year old son fell for either an Internet scam or is just a really naive child. We had both been led to believe that we were having a car donated to us by some very nice philanthropists. My son was very proud of everything he had done for this and I trusted that it was going to happen. I think he may have just fallen for some big talk and am praying someone was not trying to get my son alone for anything horrible.
Luckily I have a great friend that let us stay with her. She is another Mom of a Rett Child and opened her home to us and was a great hostess.
Kelly Butler and Brooklyn and her family drove in 3 hours just to spend a few hours with us at the zoo. It was almost unreal meeting them.Like meeting rock stars or something. It went by entirely too quick with everyone. I would of loved to spend a few more days with everyone. Not sure I will do it with the entire family packed into a small overpriced rental car for 11 hours there and a day and half back in a blizzard!! An hour flight sounds much more appealing.
Enjoy the pics!!

Thursday, March 11, 2010

Dress Up 2 Cure For Rett Syndrome!



April is Autism Awareness month and above is my sweet Rett Angel Abby. Rett Syndrome is on the Autism Spectrum.

We have formed a fundraising team this year called Team Abby and we have a special page at http://www.firstgiving.com/abbyskcangels

Rett Syndrome is caused by a defective gene on the X chromosome which is why is it is it affects females the most.

This gene is called MECP2 and it is considered the regulatory gene for every other gene in your body. In other words...It turns on and off all nerve function in the body. When this gene is defective it keeps all functions in the body and brain from performing correctly.

Girls with Rett Syndrome are typically born healthy and appear normal and achieve all of their milestones until 6-18 months of age when first signs of Rett Syndrome start to appear.

Girls start to suddenly lose almost all the skills they have acquired up to this point.

50% of Rett girls are unable to walk

80% suffer from some sort of seizure disorder

They lose most or all of their purposeful hand use.

They suffer from tremors and extreme anxiety

They are unable to speak or sign and have almost no communication skills.

In February of 2007, a complete reversal of symptoms in mice just days away from death was published! Researchers at top-notch institutions all around the world are working on treatments and a cure for Rett Syndrome.Their work is not only helping thousands of girls and women worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's,Parkinson's and many other disorders. Most money raised for Rett Syndrome is raised by private efforts. We are by and large overlooked for government funding even with a known gene, excellent animal models and PROVEN reversibility.

You can help by spreading the word and by donating to the cause. You can honor Abby by donating here during the month of April or clicking on the link on the top right of this page.

You can find out more information about our cause and Rett Syndrome at RSRT.

Thank you

Thursday, March 4, 2010

The Death of Common Courtesy.

I have often thought of this topic lately. When exactly did common courtesy in America die? Was there an announcement I missed?
I can remember growing up in the 70's and 80's. A gentleman opened a door for a lady. I can even remember a time that it was so expected that if a man and a woman were close to arriving at a door at the same time the man would step up a bit so he could open the door. And a lady paused. It was seen as rude for a man not to open a door. It seemed very brash for a woman to step in front of a man and open the door. My father and grandfathers would have given my brothers and I a good pop upside the head if any of us had either not opened a door for a child, a lady or an elder. If had tried to open the door for a man..it would have been considered insulting.
We were taught to always say please and thank you to everyone for everything. To never treat anyone in a service industry as if they were there to serve us. To always yield to someone trying to change lanes and to always wave when someone let us over on the highway.
A big pet peeve for me lately has been those little buttons with the disabled logo on them that automatically open doors that used to automatically open for everyone. Now I know you couldn't always just walk up and have the door of hospitals and stores just slide open. I can even remember getting in trouble for playing with the sensor. Now the reason these little buttons annoy me is because I now have a need to use them. My five year old daughter has a severe neurological disorder and must be transported in a wheelchair. Whenever I push these buttons the general public will walk around me to go through in front of us or make us wait while they come through. Do they actually think I push that button to open the door for them while I stand there with our chair? Awful nice of me I must say. You would think they would at least say thank you.
Last week I had a very...ugly public day.
In the morning I had to take my daughter to a meeting. I had to wait while a dozen or so men and women in business suites walked out of the building. Each one walked by and around us and not one person said excuse me and not one held the door open. Not one. I had to back up to the door,keep it open with my foot while I backed my daughter and her chair through. I wasn't even really annoyed because this is the norm for us.
After an hour and a half meeting the very same took place as we left the building. Now this time I did kind of sigh and shake my head. But that was it.
I soon remembered that I had not yet eaten and it was past noon. We stopped at a local chicken place. The people inside watched as I lifted my daughter out of her seat and placed her in her chair I had wrestled out of the back of our van. A few men coming in to meet some coworkers that were already there were nice enough to let me open the door for them while they got in line in front of us. Again I wasn't mad. I was a little sad and while we ate our lunch I wondered what people must think.
In this world of political correctness is the general public afraid of offending me by helping or are they afraid they will catch something if they get too close?
As we were leaving this small fast food restaurant eight grown able bodied men stood up at the same time I did. And everyone of them stood there while I opened the door with my butt and backed my daughter out. They then stood there and took turns holding the door opened for each other and the other people leaving....Sigh
I was so tired when we left there that I just wanted to go home and hit the grocery store later if I could get someone to watch my daughter. It was just across the street so I decided to go ahead and get my grocery shopping done. Thank goodness most grocery stores still have automatic doors!
I went up and down every isle pushing my girls chair while I pulled the cart. As I rounded the last isle a clerk came to the end of her isle and walked down to me to ask if I was ready. When I told her yes she took my cart from me and walked it down to her isle. She then took all of my groceries and put them on the belt for me. I must have been a sight with my eyes bugging out and my mouth on the floor. While I was fishing out my credit card she got down on one knee so she could be at eye level with my daughter and had a little chit chat with her. Even though my daughter is completely unable to speak. I was so stunned I just stood there with my card in my hand. I snapped out of it when she called for a sacker to take our cart out and load our car for us. Could it be? Common Courtesy for us too?? What?
As I was thanking her she gave me the biggest smile...Her name was Becca and she made my day. The rest of America could learn a lot from this young lady and I had to tell this story. This one little act of kindness made all the difference for us that day and I have thought of it everyday in the eight days since.
Thank you Becca.