Saturday, July 24, 2010

1st Annual Kansas City Strollathon for Rett




Please come and join us for this fun-filled family event. There will be a wonderful silent auction and a show put on for the kids and adults :) to see some exotic animals. His animals have been seen on Rachel Ray and Jack Hanna uses them alot. You'll just have to come to see what those different animals are. LOL Not to forget a great DJ!!!
The Strollathon is a walk to raise money to fund the important research needed to help my daughter, Abby and all of the other precious angels this devastating disorder affects everyday.
If you want to start a team or be on a team, please let me know and I can get you set up. We also have virtual team opportunities if that works better for any of you. All the proceeds will go towards the Kansas Stroll and then to IRSF for research.
Also something exciting this year is that every dollar raised with be matched dollar for dollar!!!!! That is amazing!!!
Please join my family and I plus the other local families and friends on Sept. 25th while we have fun and raise money and awareness for Rett Syndrome. The event is being held on Abby's birthday weekend.
2 years ago we attended the St Louis Strollathon and I was in awe at the teams. We had just me,Abby and Daddy. 2 of the teams had several dozen people walking with them. It was so touching to see that kind of support for a girl. I would love the schools,friends,coworkers to join Team Abby KC. You can make your own team for Abby or join ours from anywhere in the world by going to the address below.
I would love each hotel in our chain, friends,family and their businesses to have their own Team Abby and walk with us on September 25th. That is just one day before Abby's 6th birthday and I can think of no greater gift than the gift of your support and awareness. To join our team or create your own team for Abby please click HERE

September 25 · 9:00am - 12:00pm



Location Sar-Ko-Par Park in Lenexa (Where the Lenexa BBQ is) 87th and Lackman

Tuesday, July 20, 2010

I know

Boy have I had a couple of crazy days. Yesterday my Aunt Pam graduated from college. She took me and my Mom with her cause we wouldn't have had a way to get there. Man air conditioning rocks!
We had to get there early so me and my Mom had to wait in the lobby for 2 whole hours. My Mom likes to pretend that crowds and people don't make her nervous but I know they do. I know she used to like to people watch. Until we became the watched. Sometimes I really wish I could use my hands just to be able to poke people in the eye.
My Mom tells people not to get upset when people are staring at me. She says they just do it because I'm so pretty and people are confused why there are so many things that I cant get my body to do.
I know when people are really staring and really wondering because they are concerned. I like to dead stare back at them. It takes their breath away. And boy when I flash my smile. Hah suckers...gotcha
Yesterday there was a very nice lady that was taking us in the elevator to the special place I could sit so my chair could be next to my Moms. When the door opened a lady stepped over the side of my chair so she could be the first in line when we were obviously being escorted. I heard my Mom take that breath she takes and felt her grip on my chair. Then I heard a man behind us tell the woman she was rude. My Mom amazes me. She told the man it was OK. The lady had the problems not us and she was the one he should feel bad for. I'm sure it must have taken a long time for my Mommy to get that way. I once heard her tell someone it was easier for her to take the high road then be in jail every time someone made her mad or was inconsiderate to me. Pick your battles is what she says.
I heard her talking on the phone last night. Even she forgets that I'm right here. She was crying and telling someone that she was not gonna leave me at home. Kids go to the store and to dinner and to the movies and on vacation and to graduations and until I make it obvious to her that I dont want to go that she is gonna walk me, wheel me, and carry me on her back if she has to.
And I know she will.
I know.

Saturday, July 17, 2010

Vacation

Hi all.
Several years ago, after Abby was diagnosed I met and became online and on telephone friends with a great group of people who are also parents of A child with Rett Syndrome.. After a while I started a support group for us called Rettlanders. We started out on Myspace and eventually moved to Facebook. There have been 8-10 of us who message, talk or call quite frequently. Some come and go but are always there for us as we are for them.
We are as much a family for each other as any part of our physical family is. The bond you share with another parent of a child that was robbed from you is amazing. Almost every one of us can tell the same story of how it all went down.
2 years ago Abby and I went out West to the Oregon and Washington Line. There are 3 of the Moms that live within driving distance of each other in an absolutely beautiful area. Another Mom I had developed a strong bond with flew in too and we all had a wonderful time together.
Long distantly we had been through seizures,gtube surgeries, our own illnesses and operations. Birthdays, Christmas, Mothers and Fathers Day.
When we all physically met there was absolutely no weirdness about our friendship being online. We were sisters from the start. Sisters that get along..that is. I had never been more comfortable in a place with other people as I was when we all got together for a Rettlanders Slumber Party.
Everyone so naturally interacted and cared for each others children it is almost impossible to explain. When you have a child that everyone stared at and whispers about. When every single thing in life for her and for you is a struggle...being in a room where there is nothing but love and acceptance is so heartwarming. I was brought to tears many times at how comfortable I was there with these women.
There are several others of us who were not able to make it that time or this time. It is very costly and very hard to pay for flights and arrangements. To carry a child with physical needs, a wheelchair,bags,meds,luggage. It is quite the struggle. The other parents have several other children and lives that don't let them just go. And we missed them.
We promised each other that we would do it every year but that was not the case as life happens.
I would love for us all to be able to get together somewhere so they can share in our family and our craziness.
I took a zillion pictures of my trip so I put them in a slide for easier viewing


Monday, July 5, 2010

Laurete Software



I know I have been promising to post some video of this software for some of you special needs parents for quite a while. We went almost a year without a computer that could load the software and we were waiting on a touch screen. We finally got a touchscreen overlay that helps but is not near as sensitive to touch.
This is a little video of Abby's 1st time in months using the software. We usually have to help her by looking at the reflection to see where she is looking so we can make the choice for her. Her hands don't work correctly and she sometimes bangs on one while looking at the other or bangs on them both. We are hoping to get some eye gaze pointer equipment soon. It acts like a mouse and will click on whatever she is looking at for more than a moment.
I highly recommend this starter software for the non verbal. When it was first introduced to us I refused to let her try it because I didn't think she could do it. The therapist insisted and we were amazed. When she couldn't get her reach or hands to operate correctly she touched the screen with her face. We bought it immediately.
Here is a link for anyone interested. Laurete Software

Saturday, July 3, 2010

DADDY AND ABBY DANCIN AT JENS WEDDING. SHE'S LEADING



We got this video of Abby showing her Daddy how to dance at Jens wedding. A few days later a friend called to tell us that she had found a place that does ballroom and salsa dancing for the disabled. Mostly wheelchair dancing with an ablebodied partner but I think it would be great for Abby and her Daddy.
For those that don't know..before Abby was diagnosed her Dad did Ballroom dance instruction as his second job.