I wrote about some of my feelings related to Rett Syndrome on My Rett Body page.
Archive for December, 2008
I’m Chewing and I Can’t Stop
I have added some information about chewing on My Rett Body page.
Eating with Rett Challenges
Under My Rett Body I have added some about my challenges eating with Rett.
Anxiety and Frustration: Living with Rett
I have added to My Rett Body sharing my experience with anxiety and frustration. I hope it helps other Rett families.
Love, Karly
Sparkly Things Capture My Eyes
I added some information about how objects and sparkly light distracts me, under My Rett Body.
My focus this past week has been to share how Rett has affected my body. I am so honored by the responses you have left. If you have specific things you are wondering about, please let me know. I may be able to share something about that. I hope my Rett friends are being loved for the wonderful people they are today.
Karly
My Hands: They have a mind of their own
I have added some more information about my hands on My Rett Body.
My Life Holding my Breath
I am having a hard day holding my breath and hyperventilating. I wrote about it on my new page titled, My Rett Body, if you want to learn more.
Love, Karly
Rett Syndrome is Not the end of the World!
This has been an incredible week for me. I have heard from three families who have daughters with Rett Syndrome. I have found a new friend with Rett who I can communicate with in Oxford, England. That is a miracle to me. She is 21. We have been sharing emails this week, getting to know each other. I am so excited because there are so few of us who seem to be able to communicate. I know there are thousands who could, if they could be introduced to a communication way that worked for them.
Even more exciting and humbling to me are the parents who take the risk of asking me questions specific to their daughters. I hope and pray for those girls and their families that life changes because of the insights I can offer to them. I have some of the questions I have asked on my Q & A page, but I thought it might help if I wrote a series of blogs on a new page, that addresses some of the questions I get asked by parents.
I want to start by sending you great hugs and love, because you are doing a great thing by respecting your daughters enough to consider what I have to say. I am not a professional, but I live with Rett Syndrome, and I struggle to accept it myself. I am sure I will get too tired today, to write all that I have in my heart, but I will share all that I can as I’m able. Check out the new page at the top of the screen titled, My Rett Body.
Love, Karly
Thanks to the Internet
I have shared with you in the past, how amazed I am to have so many people interested in what I have to say. I have been getting more emails again from other families living with Rett Syndrome. I got an email this week from another Rett mom whose daughter is 21 years, and uses the same form of communication as I do. I am excited because they have never met another Rett girl that is able to communicate like we both do. I am excited because we are going to become email pals. With her ability to communicate with a keyboard, we are able to be friends, even though she lives in Oxford, England.
I have another friend that I would really like you to meet. Her name is Jenni and her blogpage is: http://thesitethatbreathes.blogspot.com/
She and I have met through emails and would like to meet in person one day soon. She is an amazing young woman, who is able to do amazing things. She is able to attend college and requires assistance around the clock like I do. She uses a voice activated system to use her computer and has an incredible blog where she shares her views and life experiences. Even though our disabilities have different names, the end result is the same. I think you will find her blogpage very informative, and I would love to have you check it out.
Karly
“My Pony, My Beau”
It was a great event yesterday. Many of my best friends and family came to support me and the other writers that presented. There were over 120 people that came to hear what those of us who live with a disability have to say. There were published authors and novices like me. The room was decorated so pretty for the holidays. I was so eager to share my song because it took me 13 months to compose it. It is a song in honor of my miniature companion horse, Beau.
I can see his little feet moving and doing things that are amazing and sometimes naughty in this song. I want to have it played “mischieveously”. He fits the dictionaries description of being “playfully naughty”. He’s very curious and is alwys looking for something to do. He wants to have us intereact with him. When we come home he runs to the fence and nickers at us. It’s fun to see how eager he is to interact with humans.
When my uncle came yesterday to put on new barn doors he made for Beaus barn, Beau was happy to help! He picked up my uncles’ glove and ran around the paddock with it. He was mouthing the drill and checking out the new door latch to see how it worked. He walked all over the old doors after they were taken down. He tried to push the new doors over while my uncle and Gregg were putting them up, so they had to block him from getting into the barn. So, as you can see, he is full of playful mischief!
The recording of this song is under “My Music”. It will be professionally recorded in a studio this next year so I can have my first CD. It will have all 8 songs on it. The title is going to be, “In My Own Voice.”
Thanks to all my dear friends who came to support me yesterday. You are wonderful to me.
Love, Karly
Inspired By Love 