Archive for Companion Horse
November 12, 2009
· Filed under Companion Horse, Disability Awareness, Music & Art, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs, piano compositions · Tagged Oprah, Rett Syndrome awareness
A peaceful day with Beau. He was standing on a step to get behind me.
I am so content today. I am struggling with breatholding and hyperventilation today, so it’s not that kind of contentment, but I have had an amazing week. I was asked if I would sit on an advisory committee for an arts program for adults with disabilities in our community. It is called, Art St. Croix. I am so happy to be asked. I don’t know for sure how I can help, but I can give my insights into what I have experienced in being able to express myself through writing, composing and painting. It is so incredible that I have been asked because I don’t speak. I never expected being thought of as someone who could be helpful in this way. Here I am in my living room today, listening to our water bubbler, chewing on my bandana, breathing like Rett makes me do sometimes, and yet I am doing things that help my community and the world for Rett Syndrome. It makes me so content.
I have had a number of people leave messages for me on my blogpage today. It makes my heart so happy and made my Mom cry with joy. I know I am doing what I was created to do and that brings me peace. I was asked a while back by a Mom whose daughter was recently diagnosed with Rett at 14 years, if I would be able to help them raise peoples awareness of Rett Syndrome. The mothers’ got together and decided to find a way to help bring attention to Rett Syndrome. They asked people to write letters to Oprah, asking her if she would do a show. Researchers feel they are close to finding a way to reverse Rett Syndrome. They need more money to continue researching. The mothers hope Oprah can help with their mission. I was asked if I would write a message for Oprah because they are in contact with her people that help her. I did that this morning. I hope she hears what I have to say.
For those who are still struggling today and have Rett Syndrome, I’m sending you the message to hold on! There are many people who are trying to help, and I’m one of them. I’m trying to give hope to those who live without an audible voice yet.
Here’s a big hug for you. ((( : )))
Love, Karly
July 24, 2009
· Filed under Companion Horse, Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs
This has been a wonderful week. I feel great. I visited my friends who are twins with Rett Syndrome. It was so great to see them. They are healthy and doing great. They just got back from the North Shore of our state. They both felt so content while they were there.
I wanted to share something that I think is so important for my life. It may also be helpful to you. While visiting with my caseworker this morning, I realized that what everyone needs for their own life is purpose. We were talking about how little there is to do in our community that is specific for adults with physical disabilities. It seems that most of the activities offered to adults with disabilities is for anyone with any type of disorder. We are all grouped together. They believe that I would be interested in going to the fair, or making brownies from a mix, or shopping once again, or bowling or doing something that involved a craft that I can’t do. They don’t make any activities for adults like me who have high intellect and yet require much assistance in order to be involved. I can’t go anywhere alone. If I didn’t have the ability to communicate my needs, I would be in a program for adults that have mental disabilities because of my diagnosis. I know of others like me, who struggle to be understood and are very isolated even when we are with a group because if we don’t have someone with us who can help us communicate, we go unheard and misunderstood.
I have so much joy today because I am able to be at home with my Mom and writing this during the day, instead of a program that would have drained my life right away. I think of my other Rett friends who can communicate and even though we struggle with our bodies, we are all intelligent. I know there are others who are capable like we are, and are being believed to be intelligent even though they are yet without a voice.
I encourage anyone who has someone they know with Rett Syndrome, to not give up on them. I am so much better now that I can communicate in my health and my mind and my spirit. I don’t believe that they people who make decisions for those of us with great physical challenges know how to best help us. It is individual and it starts with those who are closest to us believing in us, and giving us opportunities to increase our understanding of this world we live in. Those who help us discover what our gifts are, and give us companionship along the way.
My heart is content today, and I thank my family for giving me a great life, one that has purpose, and is full of love. I send you peace today. Love, Karly
Here are some of the things I did this week:
Beau and I hung out in his barn
I went to Lauries house and rode Chester. They watched mydocumentary with me. Chester and Laurie are in it.
May 24, 2009
· Filed under Companion Horse, Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged Rett Research fundraiser
It is a beautiful sunny morning here. We love them, and I am outside writing this blog. My Mom has our small recorder so while I’m typing she’s saying my words into the recorder.
I want to congratulate my friend Tara Reddington in Rhode Island for the fund raiser they did yesterday to support Rett research. They raised a lot of money to help find a cure for Rett Syndrome. Their daughter Grace, is a beautiful young girl who has very severe symptoms related to Rett. She has been in the hospital a lot. Tara has been so kind to me, and respectful and excited to hear of my experience in living in a body that has Rett Syndrome. Please check out their blogpage: http://www.theraceforgrace.com/
I am aware that I am fortunate. I struggle with many things related to Rett Syndrome, but there are girls and women who are so much worse off than me. I am recovering from another bladder infection and the resulting symptoms of many small seizures and exhaustion. If I could prevent myself from getting sick, and all the trouble that comes with it, I would be so grateful. We are working hard to stay healthy. I am writing a lot for the camp that I am speaking at this summer. I have most of my talks ready. We were invited to the camp directors house yesterday. They made a beautiful day for us.
Here are some current pictures of me walking with Gregg, and me with Beau on our new patio.
Love, Karly
March 20, 2009
· Filed under Companion Horse, DSP's, Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing
I have been silent on my blog lately. I have been doing a lot of writing for my camp talks in July. We made the decision to accept the camps offer to have me be their chapel speaker for 4 days. It is exciting and fun and scary for me. I have never been in front of people for 90 minutes at a time. Much of that time will be singing or activities, but the speaking part is mine. I am so honored by that. The theme is Molded for a Purpose. It has given me much to think about. I believe that every person has a purpose. Sometimes it takes a long time to figure out what that is, but I also know that EVERY life has value to God. If we were to just believe what others in this world do, those of us with the inability to speak and care for ourselves, would be takers and not contributors. I KNOW God doesn’t see us that way. I know that in the bottom of my heart.
My friend Elizabeth, who has Rett, is coming for a visit next week. I can’t wait to see her. I have asked her if she can share some of her flowers with us. She has created the most beautiful flower gardens at her house, and has said that I can have some of the plants for our house. We are thrilled! I love flowers. She selects the plants at the nursery, and then decides where they go in the garden. Her parents say the gardens are amazing. Elizabeth has a talent for finding unique plants that normally are not seen here. I have not been able to go into her garden because it’s on a steep hill. She is able to walk so it’s easier for her.
I have been so happy that the birds that are here in summer, are returning. We have some bluebird houses in our yard. My parents have seen them returning this week and starting to build their nests. I love summer. Beau is shedding and getting ready for warmer weather.
My Mom is at home with me now full time. It has been a difficult time finding new women and getting them trained. She is tired.
It is close to one year since I wrote my first blog. There have been 26,500 people visit it. I am so glad for the encouragement most of you have given to me to continue writing. It has changed my life to have so many people find hope and support for their daughters by reading my blog. I hope Elizabeth and I can write one together again soon. I love to hear from you. It makes my day. I am eager to write more as I think of things to say. If you have topics that may be helpful to hear about from my experience, please let me know.
Love, Karly
February 6, 2009
· Filed under Caregiver, Companion Horse, Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome · Tagged finding caregivers, message to caregivers
It has been a bewildering week. The main caregiver I had during the week left and hasn’t called us, so we don’t know what the problem is. I counted on her for 9 months.
I am expected to be comfortable around my caregivers. If they only knew what I have experienced at the hands of caregivers in my lifetime, they would be amazed that I could trust at all. Yet, in their need to be respected, they expect me to just go along with them.
They see me in my most difficult times and are with me in my times of accomplishment and great joy. I never see them in their private lives. I only see them in my home. They are very eager to keep their lives private. They are at our table for family celebrations and with me at the Dr when I am too weak to hold my head up. My life is open to them. They expect it. I don’t understand how that level of involvement can be so easily dismissed by them.
I am wondering if I am only a source of income for many people. They say the right words to my Mo, but their actions deceive them. It is hard to count on people who are so heartless. They expect respect and trust from us, but are so disrespectful and act unworthy of trust. It is incredible that there are people like that provding care to those of us whose very lives are dependent on them.
My hope for today is to find someone who is eager to be with me, who sees my talents and want to help me to be the best person I can be. My Mom is that person for me, and we need help. It is too much for her alone. I need people who care and would NEVER walk away without saying goodbye, who think to much of me and themselves to leave us hanging, wondering what happened. Someone who doesn’t come with so many burdens of their own that they don’t know how to involve themselves in my life in a healthy way.
I have many reasons to be alive. I don’t want to be a burden to anyone. So my hope and prayer for today is to find someone who is eager to be my helper. Someone who can see that my life is valuable…as much as their own. That God has given me a great family and friends and a beautiful little horse, who has cats! Someone who wants to be involved.
Please come quickly.
Karly
December 7, 2008
· Filed under Companion Horse, Disability Awareness, Music & Art, Rett Syndrome, Writing Memoirs, piano compositions
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
December 3, 2008
· Filed under Companion Horse, Disability Awareness, Facilitated Communication, Music & Art, Rett Syndrome, piano compositions
It was last week one day when our friend Sandy came over to get some photos of Beau in the house. He was so excited. It was like summer in here with green plants, and a water bubbler going. He’s usually very calm in the house, but that day he was just eager. He did everything we asked him to do as long as he had a carrot offered to him. It was a fun day. He stood on my chair and on the couch.
He took his photo shoot in stride. Sandy took about 260 pictures, so it was hard for him to be patient, but we had a fun time. We have wood floors so he slips too easily if he doesn’t have his boots on.
He is an entertaining horse, so it is fitting that he now has a song just for him. I am so pleased with the way the song turned out. It is to be played “mischieviously” so it captures his spirit.
I love spending time with him. If we could keep him inside during the winter I would love it, but he would be too hot. He is so nosy, he would eat everything!
I’ll share the song on my blogpage this weekend, after my event.
Love, Karly
He was pushing the keys and making sounds
Checking out my friend Stephanie
Walking with Caution
3 sets of shoes
- Contentment
November 21, 2008
· Filed under Companion Horse, Disability Awareness, Music & Art, Rett Syndrome, piano compositions
I am sitting here with my Mom this morning trying to find the words to share what I am thinking. I am feeling much better. I have been having a tough time with seizures these past ten days. Today, I feel great!
I am so happy because we finished my latest song yesterday. The notes were done but the tempo and other details needed to be finished. I am so excited about my latest piece, because it is so different than my other songs. I titled it “My Pony, My Beau”. It is a song that came to me in the Fall of 2007 while I was in the paddock with Beau. He was being silly and playful. It was a fun day.
I remembered the song for a long time until Karen and I were able to complete it. It took us 12 months to finish. I was so eager to get it out because it was a complicated song. I held it in my head for it to be shared as I heard it in 2007. I am so eager to share it with everyone on December 6th at a community event. I was able to share it with my sister Leah last weeknd when she was home from Ohio. It was the first time my Mom, Gregg and Dad heard it too.
I will put it on my site after I share it on December 6th. I think it will be a fun day.
I love to share my songs because people can hear my heart through my music.
Karly
July 18, 2008
· Filed under Companion Horse, Facilitated Communication, Rett Syndrome · Tagged seizure
I’m here today recovering from a seizure from yesterday. I’m still weary. I wanted to share what it feels like to recover from a seizure. I can go for weeks without one, and then I have a few in a short time. It is so frustrating for me, because I want to have a lot of activity during the day. If I can’t get out of bed, I am really sad. I don’t like to live in bed! It’s not fun for me.
I know there are many who have more seizures than I do. It is so much better for me because I am not having them everyday. The thing I want to tell is seizures are not scary for me. I know they frighten others when they see them, but for me, I don’t remember. If I knew when I was going to seizure and I could communicate to someone, I would like that. I’m told that most of my seizures happen at night. It is not often that they come during the day. I am excited that I feel better, but today I am struggling with apnea.
I am going to wrap this up, go out on the deck and hang with Beau. He is learning some new tricks. I will tell you about them soon. We have a new camera, so I will try to post some new photos soon.
Karly
June 28, 2008
· Filed under Companion Horse, Facilitated Communication, Music & Art, Rett Syndrome · Tagged grief, hope, loss
When I last wrote, I had so much hope in my heart. I was expecting something life changing to take place. My Mom and Gregg and I were expecting to have our lives turned upside down. I share this because we believed it was going to happen. We were praying about it. We were trusting because the visits we had with the people making the decision and those who were advisors were very positive. Everyone who heard of this opportuntiy for our family said it was a perfect fit. We shared this with only a few because we didn’t want to spoil our life changing surprise by talking about it.
As I write this everything we believed and were so confident in, has not taken place. It has been so very sad for us. If you have ever fully expected something to happen, that you could see it and it didn’t take place, you will understand our grief. It was so close to being real that we felt it happening. I share this with you because the way I have had to handle this may be unique to those who are silent. I cannot process this through talking. I cannot walk or run on my own. I can’t even cry. When we got the news I was so stunned, I had the hardest seizure I have ever had. I don’t remember much about it, but my Mom and sister were with me. Since I have had to find a way to grieve, I have been silent here.
I am happy today because I have been asking God to take this pain and do something useful with it. He has been able to do that. I can’t explain how. I have been praying so hard because this loss has been too much to bear. If you could imagine not having a way to deal with your most heart wrenching pains in your life….well, you know what I mean.
There are good things happening too. The documentary being made of my life…Daniel Kinney is the filmaker. He is a beautiful person. He is so kind and gentle and has given me the title of director. He sees himself as my servant. I can’t tell you how excited I am to meet the young woman who auditioned to be my voice. She is a beautiful singer and gave me one of her cd’s. There were 7 who auditioned, and Jennifer was my favoirte for my voice. I have been working on my script for some time. My piano compositions will be a big part of the documentary…how I compose, and other things about my life. Daniel is encouraging me to write lyrics to one of my pieces.
We are working with Beau (my minature horse) trying to get him to identify objects from a group of three, having him put it in a bucket. He loves to mouth things, so we decided to have his mouth get a job. He has learned a lot of things and is very smart, so we are expecting this to happen soon.
I hope you are enjoying summer.
We love the amazing chimes my mom and I found at a garden store last week. I have never heard anything so beautiful. They sound like a cathederal. Mom let me choose my favorite one. They are huge and have a rich tone when the wind catches them just right. They make me so content. We wanted to take something that was so sad and make it into something beautiful. The chimes are making smiles on our hearts.
Karly
