One Day Old
Connor was born on September 12th.
Love, Karly
Archive for Uncategorized
I Sit Here Smiling
Here are some of my memories of camp in Iowa.
There was a dance
I have never been in a golf cart. I loved it.
Emily has a rare talent. The basket is filled with my laundry
Ashley was so kind to my new friends
My Mom read my script. I had worked on it for 3 months in advance.
My Mom and Gregg love me so much. I was so glad to be there with them.
I was able to be in the last worhsip time with my friend Deb. Scott played such beautiful music.
I have joy today.
Love, Karly
My July 4th Birthday
I had my 24th birthday on July 4th. My family was here with me. We had a small gathering to celebrate my birthday. Since I was a baby, we went to the parade on July 4th, and then had a family gathering. Since it was so nice we were able to eat on our new patio. I planned the menu with Mom. It was sweet corn, my Mom’s potato salad, a pesto pasta salad, baked beans and fried fish that my step-dad Gregg caught on his fishing trip. It was great! My Uncle Allen made it so perfect. We all loved the fish. I was able to eat some of the meal, but I planned it so everyone would like the food. Most people are able to eat dairy and gluten, but I love smelling what I couldn’t eat. Mom and Gregg picked a bunch of strawberries last week, so we had strawberry shortcake for dessert. It was great!
Here are some photos.
Emily and me with our sunglasses
Allen and Kristin are engaged!
My Mom and I
Thanks for the fish Gregg!
On Our Patio
My grandparents
My friends Bethany and Suedi came to visit.
The Fed-Ex truck came and delivered flowers from my friend Ashley. That has never happened to me before!
My sister Leah was not here, because she came home for Grandpas funeral, but she sent me some amazing gifts. She sent me a new sound system so I could listen to my music and books on tape better. She also has an Ipod coming that she is putting lots of fun music on. She and my Dad bought it together. I am so glad they’re supportive of my interests.
My Mom and Gregg got a new Flip Video camera so we can record more things and make our own videos. I will post something soon on my blog after we get it figured out.
I shared my documentary with my family for the first time. We have been working on it for a year. It is not perfect but it is getting close. I will be sharing it at camp. I was so appreciative of my families comments about the film after they watched it. It is eleven minutes long.
Happy 4th of July everyone.
Love, Karly
Everything Seems Hard
I wrote on My Rett Body page about some difficult days I have had lately related to Rett. I hope it helps my friends who are silent.
Love, Karly
I’m Tired and I Can’t Wake UP
I have written about how sleepy I have been this past week on ‘My Rett Body’. I added some information about the activities I am doing this weekend. These are the things that I want my life to be full of.
Love, Karly
Three Rett Women
I am so glad to share with you today that Elizabeth and Ali are writing two blogs with me. Elizabeth and I have been writing our response to what seems like typical experiences for most people, but when experienced by us, it is very different. We sent our draft to Ali in England, who is so excited because it also what she experiences. We are in the process of getting all our ideas put together in these two blog entries. We are all very excited because we discovered that what each of us thought was only our experience, is shared by all three of us. We are all in our twenties, but we have great memories. Elizabeth and I remember things that happened when we were one year old. I haven’t asked Ali but I think we will be writing a blog about that too.
Because there are so many young girls who haven’t found their voices yet, we may be able to help them by sharing our memories of what we were experiencing. I have been writing for almost 1o months now, so I have become braver sharing about my life. It is a new experience for Elizabeth and Ali, so they are being cautious about what they share. They want it to be accurate and I respect that. I’m trying to be patient but I am eager because the inf0rmation is new. It has helped the three of us to talk about this together. It has given our struggles words. I hope to have them posted this week. I am really happy we have found each other. It’s been so good for all of us to know we are not alone and to know that what we are living can be helpful to others. We don’t feel ready to have our lives exposed but we hope that by sharing parts of our story it will change peoples thinking about Rett.
I wish Ali could be here with Elizabeth and I. I am so glad my sister set up my email for me and my friend Sandy, encouraged me to start my own blog. It has changed my life and I hope the lives of many other Rett friends and families.
I am so happy to hear from so many people who have had their minds open to the fact that the Rett girls they know are only silent, not unaware and ignorant.
Love, Karly
Technology and Friends
I have had an amazing thought. Recently, I have met Jenni in person. In theory, her body is more challenged than mine, but she is so independent in many areas that I am dependent in. I am amazed to see what she is able to do for herself. Because of her injury, she has no use of her hands, but she can driver her power wheelchair and write her own blog, and write her own papers using technology. She has written about it on her blogpage, (thesitethatbreathes) which is linked to mine. I was so amazed by what she can do.
She is a motivational speaker, she goes to schools and events where she shares her insights and stories. I hope to go to one of her events soon. I am so inspired by her.
If it were not for technology, we would never have met. It is because of our blogpages that we found each other. I hope to be able to use her system that will allow me to communicate faster. I am pausing a lot when I type, because the person who writes down what I say, often has trouble keeping up with me. It is hard for me to keep starting and stopping. I really want to try my friends system sometime soon to see if it will help us.
Love, Karly
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.
