Archive for July, 2010

Leah Was Home

July 30, 2010 · Filed under Disability Awareness, Music & Art, piano compositions, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , , ,

 It has been a great week.  There were many great times with Leah, and I feel content.  

 

It's just the beginning of Artworks!

 Last Sunday was the Lumberjack Days parade, and our group Artworks!, was in the parade.  With many people helping,  we created many beautiful and colorful things to have in the parade.  It was fun helping to create it, but I wasn’t feeling good enough to be in the parade.  Leah and Atyana were in it though and they had a lot of fun with my Mom and Gregg and our other friends. 

 

My friend Mike is an artist and loves to paint. Danielle is so awesome. She is fun and kind to all of us.

Gregg helped create a liftbridge. Danielle attached my poem, I See These Things with My Own Eyes, to the side of the bridge. Many people helped.

Ashley and I worked together on the water banner that Leah and Atyana carried in the parade.

Kristin and Mike are great friends. They helped a lot

The theme for our floats was the river. We made fish hats.

Kristin in the parade with our biggest fish!

My friend Mike was in one of the wheelchair boats. Gregg helped lift the bridge and Mike's float passed under it during the parade.

On Monday during the ADA (Americans with Disabilities Act) celebration in Minneapolis we heard Amy Klobachar, our state senator, and a comedian named Josh Blu who has cerebral palsy. He was on a show called Last Comic Standing, so many people know him.  He was very funny.  Amy, my mom, Leah and me were at the event.  My music was played during the lunch. 

Amy Klobachar was so inspiring

Amy me and Leah at the 20th anniversary for ADA celebration

Josh was very funny and didn't hide his disability

Yesterday, Leah, Aaren, Atyana and Amy went with me to the Apple store and bought a new computer for me.  My computer that I have been using is 10 years old, so it was having a lot of problems.  I am so excited about my new computer.  It was fun to check it out with all of them.  My mom and I are going to get used to the new computer.  It’s new for my mom too, but I think it will really help us in my writing and pictures and things. 

Love, Karly

 

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A Great Place on Earth

July 20, 2010 · Filed under Caregiver, Disability Awareness, Music & Art, My Faith, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I heard about camp last year in Iowa from our friends Dave and Margie.  They asked me if I wanted to be one of the chapel speakers at camp.  That meant that I would be sharing a message or leading an activity all four days of camp.  I had 90 minutes each day.  When they asked me last year I was very anxious about it because I had never spoken to large groups many times, and never for that many days in a row.  I was excited and after talking with Mom and Gregg about it, we decided to say yes.  It was an easy experience for me that changed my life.  I said yes, and since that time I have had so many other experiences to share my story and my music.

Doug is recovering from surgery but he is eager for camp this year. Ashley will be coming again with me.

I haven’t been as nervous this year because it was so respectful and beautiful last year.  It was the first time that a non-verbal person had been asked to speak at this camp.  They have fourteen camps in the United States.  I was so thrilled at the friends I met there because they were so kind and interested.  I asked Gregg this year to help me lead discussions so I don’t have as much time to share, but I think it will be even better.

I was so happy to meet Deb and Jason. They are intelligent adults who struggle with communication like I do.

The artist was so loving and gave everyone a chance to be involved.

The theme is “freedom”, and I have found it this year.  I feel so fortunate because God has made many miracles in my life.  I want to have everyone experience that too for themselves.  It’s going to be fun to share how my life changed because the camp leaders believed in me.  If people never gave me opportunities I would still be in a day program that gave me little to hope for, let alone recognize me as a musician or speaker.

Today, I am feeling very glad.

Emily is coming too! It's going to be a great year for all of us.

 

Love, Karly

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Real

July 19, 2010 · Filed under Companion Horse, Music & Art, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

I want to thank everyone who has left me a message lately.  I feel so much encouragement from all of you.

I don’t want to have my life seem to be easy compared to other Rett girls, because we work so hard to just keep me well lately.  It has been so good to feel great.  It doesn’t happen often.  I want to say that it is often very hard to just live another day.  But in spite of all the challenges, I find that my life is helping others.  Giving people insights into what it is like to live with Rett.

I don’t want the others females who live with Rett to get discouraged, because I know that one day there will be solutions that we don’t have right now.  I want to breathe normally. I don’t want to hold my breath and hyperventilate all day long.  It’s so exhausting and frustrating and even embarrassing sometimes.  If I could take that away, it would change many things about my days.

I have many great things that are happening in my life.  My CD is going to be played for a large event next Monday, during the lunch.  It’s for the ADA celebration held in Minneapolis.  It’s going to have many people there.  My sister Leah is coming home next weekend from Ohio.  We are creating floats and interesting things for a parade we are going to be in next weekend.  Many great people have come together to help make this happen.   Our group is called Artworks!.  It will be great to have more people who are interested in the arts join us.  I have many interesting things in my life, like speaking at camp next month that is so amazing for someone like me!  But I have much that I want to change in my life.  I am sure there are others who feel that way too.  I love my family and I love my good times.  In the quiet of my heart I am slow.  I need to remember that today.

Fish I helped create

I could sew with help

Hannah loves to paint

 

 

Beau and I have been together a lot lately

 Love, Karly

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A Hot and Muggy Day

July 14, 2010 · Filed under My Faith, Rett Syndrome, Rett Syndrome Intelligence

I am so happy this week.  It’s not comfortable outside.  There are tornadoes in our state today, but it’s very nice indoors and I am eager to write. I have many things to finish for my camp talks.  Gregg is helping me decide where to put my writings.  I have written a lot, and he helps me decide where the best place for them is.  I have songs for each day and we have DVD’s from Nick Vujicic to share with the guests at camp.

I was so inspired by Nick.  His story is so wonderful because he didn’t let his physical limitations affect how he views himself.  He gives so many people hope and courage.  There are many reasons for him to hide because he has no arms or legs, but he doesn’t hide, he lives in front of people.  He doesn’t feel afraid of their eyes watching him.  He loves.  He loves so much he travels all over the world giving his message.  It’s a lovely message because he shares God’s love with others.  I feel so good to hear his story and his honesty about the struggles he has had in his life. If I didn’t know how hard his life was before he accepted his limitations as part of his gift to the world, I wouldn’t appreciate his story very much.  I know that girls with Rett Syndrome struggle with many things.  If we only focus on our struggles, our lives become very limited.  If I have a good day I do everything I can to do things that help others and give me peace.  One of those things was going to the lake yesterday.  They have a wheelchair at the lake that can roll across the sand and go into the water.  When I was little and weighed so much less than I do now, it was easy to go to the lake because I could be carried into the water.  But now, my wheelchair won’t go into the sand.  It stops immediately when it comes to sand. So the beach chair is perfect because I can get wheeled into the water, and I feel so much more comfortable than being carried.  The beach is not far from our house and the lifeguards are so nice there.  It’s so calming to me to be in the water.  I don’t hold my breath or hyperventilate. I feel so content there.  We were hoping to go today but with the storms and tornadoes we can’t be outside.  We are hoping to go again this week.

Love, Karly

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A Morning with My Beau

July 8, 2010 · Filed under Companion Horse, Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged

Beau was so sweet to me today

It’s been a frustrating week.  I have a lot of thoughts and feelings running through my mind.  It seems that when that happens my body can’t handle it very well.  I end up feeling so irritated and agitated.  I am holding my breath and hyperventilating a lot this week.  I am sorry for the way I feel, a lot.  I don’t want to hurt myself or anyone else.  It’s so painful to have so many emotions and have so little that I can do with them.  I am doing my therapeutic listening, my joint compression, my calming CD’s, but my body seems to do what it wants.

If you could imagine having some very difficult situations in your life:  Imagine they are emotions that are related to relationships that you want to be different. How do you handle them?  Do you call your friends?  Do you scream? Do you cry?  Do you talk to the person?  Do you run or walk?  Do you eat a bunch of food?  Does it help?  Do you work hard or paint or draw?  I have tried to imagine what that would be like because I can’t do any of those things.  My life has been full of frustrations lately and when that happens my body is not my friend.  I fiddle more, I chew more, I grab things, I have trouble swallowing.  I feel exhausted, I feel overwhelmed and agitated.  My body responds by pushing and shoving.  Sometimes, I get scared because I don’t want to hurt myself or anyone else and then I feel sad about that.

Beau stands close when I type on my keyboard

This morning I am sitting outside with Beau.  I’ve been out here listening to music.  My mom and I am sitting in the paddock with beau.  He is five years old now and he is so perfect on days like today when I am not myself, when my body doesn’t give me a break. He is calm and peaceful and stands close to be my friend.  That is why I named him Beau because he is my sweet handsome friend.  He forgives me when I push.  He just moves back and ten comes closer.  I love him so much.  I have many friends and neighbors who are so good to me.  They have helped pay for so many things that Beau needs.  I feel their love today.  I haven’t been able to cry or scream for many years so it’s hard to let go of some emotions but Beau is making it easier today.

Love, Karly

My Mom brought my laptop to the barn

Beau wants to see what's happening

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