Archive for piano compositions

My Year of Joy

November 3, 2009 · Filed under Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged ,

I have been thinking about all of the things that have happened in my life this year. If I had imagined how much our lives would change in one year it would have been too big of a dream.  I am so glad for all the ways I have been respected and valued. My courage to share my story has given me so many opportunities that I never dreamed about.  I am sitting here in our library with me Mom writing this message.  This year started with a lot of discouragement and frustration.  The person I was counting on for my daily activities, left without even saying good-bye, it was a time of great difficulty for our family. But because she did that, my Mom is now home with me and I have the freedom to write and share my thoughts everyday that I am able.  I know that God has given me many opportunities that I never could have had without my Mom’s support.  I was able to type with my caregiver who left, so it was painful to have one less person to communicate with, but God has changed my heart about her. 

 I want to talk about some of the things that have happened this year because we were able to be together more and I can communicate freely with my Mom.  I have written for my adult writing class whenever I am able to do so.  It was hard when my Mom went to work during the day and I could only write in the early mornings before she left, or in the late afternoon when she came home.  Sometimes I wasn’t ready to type during those times, so it was frustrating for me. Because I was able to write I was prepared for my class. I could write my blog whenever I was ready, and I prepared my talks for camp for three months before it started.  I wrote lots of cards and emails.  About 30,000 people have read my blog this year.  I could not have imagined that before this year. We went to Duluth on a great family vacation and worked on my documentary.  It is not finished but it’s getting closer.  Now I am starting to focus on my CD and getting it recorded.

1st meeting at studio

1st Meeting at Wild Sound studio

My visit to the studio last week was wonderful.  Matthew and Gerard are so respectful and excited to help me share my songs with the world.  They have talked to a woman who they want to produce my CD.  She is a musician who has some of her own CD’s and is very excited to help me share my songs.  I have asked my sister Leah, to record with me so her parts are for viola.  She and I have not done this before so it’s very exciting for me.  Matthew was very respectful of me and wants to make sure that this is done exactly as I want to have it when it is finished.  They are going to film the recording and create a documentary of the process.  They said my story is very important to share and they want to create this film so others can see more of who I am.  This is so wonderful for me.  I have worked so hard to share the songs that I have been given.  They are not my songs. They are songs given to me by God.  It is not hard to share something that God has given.  It is inspiring to me when I get a new song but it takes so much time to finish it.  The one I am working on now has taken over a year and it is not done yet.  But God gives me a good memory so I can keep the details in my head until I am able to share them with Karen, my music teacher.  It is hard work for her and I, but I know that I am suppose to share the gifts that God gave to me.  I am eager to do that now. I have more courage this year than I ever have before. It inspires me to continue writing about my life because I know that even if it only helps a few girls with Rett that I have done what I am suppose to do.  Thanks for the kind messages you send to me.  It helps me to know that I can give other girls I will never meet some hope for their lives. 

 Love, Karly

  

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My Life After Graduation

September 23, 2009 · Filed under Facilitated Communication, Music & Art, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged

I left high school in the Spring of 2007.  I was so afraid of leaving, because I had so many friends and a place where I found acceptance.  I wasn’t unusual there.  I didn’t get noticed because of how different I was.  I spent many years there.  It was all I knew. 

I remember when my sister graduated from high school.  It was an emotional time for her, but it also a time for celebration.  She had a lot to look forward to.  She wasn’t afraid.  She didn’t have any physical reason to expect to need care for the rest of her life.   She had choices.  I was so anxious about graduation that I threw up just before leaving for the ceremony.  I knew some of my friends who had graduated and I had never seen them again.  I tried to keep up with them, but their lives went in another direction. They moved into grouphomes,  went to adult day programs or work programs, and their lives became involved with new friends.  

This may not sound all that different than the average persons experience, but for someone who is unable to speak, so I can’t make phone calls on my own and I can’t drive anywhere to get together with friends, it is a huge barrier.  My new friend that I met at camp this past summer chatted with me on Facebook yesterday, but it was only because my Mom was here and on Facebook at the time,  that I was able to visit with her.  She struggles to type easily, and is not able to drive herself so our chances of seeing each other are very few.  By the transportation and schedules are considered and our health and energy limitations, let alone all the scheduled appointments to keep us healthy, and our weekly activities to keep us occupied, our lives become pretty predictable. 

I sit here smiling today, because with all of the challenges I face to keep in touch with friends and have a life of value, I love my life.  It is a life worth living for me.  I am with my Mom most days during the day hours, so we are able to go places and I am able to communicate with her help.  I am working on helping researchers study Rett, I go places that are interesting, I help others understand people like me who are non-verbal and silent, I speak at events when I am invited, I compose music that I can share, I ride horses at my friends house.  I was able to spend the week-end with my sister Leah.   I am outside as much as possible.  The group that we are starting is expanding into our home town and the opportunities we have to serve others and also have artists and writers work with us, gives me much to be glad for today. 

I want to tell others who, like me, live with a body that creates many challenges for them to not be afraid.  There is life after graduation and for me it is a great life. 

Dream big dreams.  Dont’ let others determine who you are by your diagnosis.  Your life is so much bigger than the limitations of a diagnosis.  When our lives have great things going on, our spirits are free, and we have hope. 

I send my Rett friends a big hug today.

Love, Karly

Working on Australian Rett Research papers

Working on Australian Rett Research papers

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My sister Leah and I at Pioneer Park

 

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A Life with Purpose

July 25, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged ,

 While I was at camp, there were some people who wanted me to share my messages on my blogpage. I thought it might be better if I combined some of my thoughts.

The theme for camp this year was Molded for Purpose. When we are disabled we are often seen as people who need services and support and require a lot of money and take away from society, but it’s not how we are seen by God. I believe every person has value and was designed by God. If we are not aware of our value by God, we fill our lives with things that are entertaining and keep us busy and satisfy our own interests. But God sees all of us and has a place for each of our gifts and talents. He made us with special interests. We are all different. My talent is very different from someone else’s, but God gave that talent to me and only he knows how it can be used. He has a purpose and a place if we are open to it. Many times we get God confused with church. Church has its place, but it’s not all there is to God. People created church as we know it, but God created the people first. He knows us. If we were all alike, even God would be bored!

It hasn’t been too many years since God showed me how he could use the gifts he gave me. In 2000 I composed my first song with my friend Karen helping me get the song out on paper. Each year since then I have composed one song, because it takes an entire year to finish it. I didn’t know how God could use that. I was glad for the ability to compose music, but God started to use my songs to inspire people. I first noticed it when I shared my songs with the people at school, and how much it encouraged them. They were so eager for more. I don’t take a lot of credit for them. God gives me a song that is so strong it stays in my mind until I am able to get it out, one note at a time. It takes so long because I can’t play it myself, but Karen works really hard to make sure it is exactly the way I think it needs to be. It is so fun to be able to share those songs with others because they are a gift from God.

For those of us who live with great physical struggles this world does not value our lives. It is evident by the decisions that are made everyday on this earth. If that’s all there was most of us would find little reason to live. Because we are seen and valued by God who knows us better than any human could, our lives have purpose. It is not an easy life, but I don’t fear either living or dying. I have been close to God most of my life, and when my time comes to die, it will be a great thing. I am not going home to a stranger, but to my best friend. I talk with God about everything. It is not hard to be understood when I talk with God. I don’t have to use fancy words. I don’t have to struggle with it being a hard day to put my thoughts together. I am not limited by my ability to type that day.

I have value to God. He has created me with talents that only I can share with this world. I am not unique. I know that everyone has things they were created for. If we block what God has gifted us with, we not only limit ourselves, but we limit how God can use our lives. It is good to discover who we are in Gods eyes, not how limited we are by many in this world. We’ll discover that our lives have been molded for purpose. If we find our struggles in our minds and bodies to be all there is, it is a limited and hard life.

Love, Karly

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I’m Tired and I Can’t Wake UP

March 6, 2009 · Filed under Disability Awareness, Music & Art, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, piano compositions

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

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“My Pony, My Beau”

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

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A Pony in the House

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

He was pushing the keys and making sounds

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Checking out my friend Stephanie

Checking out my friend Stephanie

Walking with Caution

Walking with Caution

3 sets of shoes

3 sets of shoes

Contentment
Contentment

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My Latest Song

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

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