Archive for Music & Art

Having Big Dreams

November 6, 2009 · Filed under Disability Awareness, Facilitated Communication, Music & Art, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

I want to tell you today that I have so much hope for my life.  I remember when I was younger and how hard my life was, and how much pain was in, and how sad I was.  Nothing seemed hopeful. Before I could type I had no way to let those around me know what I needed.  It was so hard because I was the same person inside then, that I am now.  I have written many things on my blog about how difficult that period of time was in my life.  I don’t want to focus on that today.  The only thing I want to tell you is that girls with Rett Syndrome are waiting to be freed.  Of the girls I know who live with Rett we all are very different in our interests and gifts, but we all are very gentle and have giving hearts.  We are waiting for someone to believe in us, to give us tasks that are meaningful, that even though their bodies are giving them lots of trouble their minds are capable. 

I want to share with you some of the writings I have submitted for my event in November.  It is a community event where adults who live with some type of disability, are able to share their writings and music.  This is my third year. I submitted four pieces and all four were selected.  My latest song is not ready to be played yet, but it will be when we go to the recording studio. 

I am so happy today. I am sending a big hug to all my Rett friends. Don’t give up.

Love, Karly

IMG_2131

Riding Chester with my friends Amy, Bill and Laurie

Here are my four writings

I Am

 In the quiet of my heart I am slow

I breathe deeply

I sit quietly

I think freely

I don’t struggle

I love deeply

I contribute

I participate

I speak in ways others can hear

This is who I am

I am more than my body

 Karly Wahlin

September 2009

Edited

My sister Leah and I by the St Croix River

 If we Could Buy Some Love

 If we could buy some love our world would change

It wouldn’t cost us much

There would be no risk, we would feel no pain

We would give freely

 Our hearts would not be harmed,

If we could buy some love, we would be free

Our minds would be obsessed with making it fair, our hearts need no involvement.

 No one would go unnoticed

Stands could be set up to buy love conveniently

On our errands

Coming home from school

 Over lunch,

On our vacations

 at the hospital gift shops or retirement homes

 Love would be fair to the unlovable

 The outcast

 or folks who don’t fit in

We could get it easily

There would be no risk

 No pain

 No loss

 No regret

 Only the ability to make money to buy more love.

 Karly Wahlin

September 2009

IMG_2096

Amy and I have typed together for 12 years. I love her!

 In Honor of my Mom

 When I came to this earth my Mother was 24 years old

 I was welcomed into her loving heart 

There was no sign, no labels, no obvious reasons,

She took time with me

She gave me opportunities to develop

She heard my cries, long and full of pain

 It is her heart full of valor that believed the best for me;

That didn’t stop at the labels that limited me,

but continues to move slowly through open doors, that ever so slowly changes the minds, hearts and ideas of others

The world will be different for Rett girls because my Mother believed in me, and in doing so has given hope to my silent friends

 Karly Wahlin

October 2009

IMG_1637

My Mom and me on my birthday talking with my family

I’m Ready for Life to Begin

July 4th 2008

I’m sitting here on the deck with my Mom and Stepdad trying to calm down. I’m really excited because we are going on a paddleboat ride on the beautiful St Croix River. I have sat on the rivers edge many times and watched the paddleboats go by. It is the first time I will be one of the passengers. The ride is a gift from Mom and Gregg for my 23rd birthday!

If I knew what I know now, when I was a little girl, my birthdays would have been happier occasions for me. I didn’t know my life could be a gift to others, especially to those who are struggling like me in a silent body, to be understood. If I had known that my lifes’ story could bring an understanding to others, I would have felt more joy about being alive. I feel so joyful today, that there are those whose lives are a little better because I have put words to their experience. What I have shared, even though hard to hear, has been kindly received.

I don’t think I would have been so fortunate if my mom and stepdad wouldn’t have kept encouraging me to write, and my good friend Sandy who has been one of my greatest fans. I share this today, because as I sit here, I am struggling to breathe.

Part of my condition of Rett is disordered breathing. Unlike most people who don’t even think about breathing, I think about it every waking moment. My body doesn’t breath on its’ own very easily. I turn blue so often during the day that it is a normal color for me. My hands are a deep purple right now. I’m ready to breathe normal. I wish I could. It’s one of the things that keep me from enjoying my favorite activities. I am unable to control it, but my body stops breathing every couple of minutes. Sometimes I breathe normally in seconds, other times I hold my breath until I pass out. It is not scary for me anymore, but it makes others around me anxious and uncomfortable. ‘It is hard to see someone turn blue ,’they say. I see my hands turn blue, but they go back to pink. When I start breathing again, I hyperventilate because my body is trying to gain more oxygen. I cannot control it: my arms flail and my legs go stiff, and I look frightened.

The reason I share this today is because we are going out on such an awesome day into the community, where I’m noticed not for being a wonderful young woman turning 23, but as someone who has a problem, and who makes their day uncomfortable.

I love life and I want to enjoy myself like everyone else. So I will try to ignore their discomfort, but I am very aware of it. It makes me even more uncomfortable. I want them to know that I am NOT who they think I am. I am out having a great birthday gift with my Mom and Gregg! It makes my life valuable to know that they are wanting to be with me in these situations helping me have a blessed life. It’s not an easy life, but it is a great life.

I speak for many who are experiencing this around the world. I can only imagine what is happening in their lives today. I want to give them a huge hug.

Karly with love

 

 

 

Comments (1) »

My CD!!

October 26, 2009 · Filed under Disability Awareness, Music & Art, Understanding Rett Syndrome

I sat for many hours watching and listening to Leah play when we were young

I sat for many hours watching and listening to Leah play when we were young

I am so happy to let you know that I have an appointment this week with a studio about getting my music on a CD. We heard that there is funding available to help me get my music recorded in our town.  So I am very happy that it is about to happen.  We are meeting with the owner of the studio to find out the details.  I have asked my sister Leah, to play her viola for a couple of my songs, so she is getting her part ready.  It is so fun that I can now share music with her.  She is a great musician and has played viola for most of her life.  She plays in an orchestra and a band, so she is very good. But to have her create music with me is something we haven’t done before.  She is always encouraging of my music so this will be fun for us. 

My uncle is getting married in December and he and Kristin asked if they could use my music for their ceremony.  Leah will be playing for that too.  What is fun for me is that now I don’t just have to listen to others play their music, but the songs that are in my heart can be played by others and I can enjoy them too.  I can’t play my songs because my hands won’t work that way, but others can perform the music I have composed.  It brings me great joy.

 Love, Karly

I always wanted to play. This is at my grandma's house.

I always wanted to play. This is at my grandma's house.

Comments (3) »

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

IMG_2451

My sister Leah and I at Pioneer Park

 

Comments (1) »

Hope and Much Joy

September 5, 2009 · Filed under Disability Awareness, Music & Art

This has been an incredible week.  I have wanted to have a group of friends who are interested in doing meaningful things together, for many years.  Since I am not in a day program, and our town has very little to offer adults with disabilities, it has been lonely for me.  It is not good to be without friends to do things with.  I have so many things I want to do with others and now it is finally happening.

There is a beautiful place in our town for people who are retired.  It has everything from a pool to beautiful flower gardens, and walking paths to restaurants, and Dr’s offices, a theater, a library and very nice people in it.  They’re always so sweet to me.  My group of friends and I are going to meet there every week and do service projects and have artists come and join us.  We are eager to help others. We are so excited that they are eager for us to come there.  It is so fun for us to have a beautiful, kind place to go.  Many times adults with disabilties are given the back rooms with little interesting things to do. We are suppose to be content with projects that others give us.  We are not consulted about what our dreams are for our lives, but to be given the freedom to choose an activity that matters brings hope and lots of joy.

I am content.

I am smiling :)

Love, Karly

Comments (2) »

My Mother

May 10, 2009 · Filed under Disability Awareness, Music & Art, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged

It was a day when God chose a mother for me.  He knew my life would be full of challenges, and looked for a mother who could see past my limitations and see my heart. 

 It was a day when I came into this world,  full of the promise of my new life. 

 It was a day when my Mother knew that our lives would be forever intertwined, because my needs were so great. 

 It was a day, when through sleepless nights, she continued to love me, and determined how to care for me.

 It was a day when we read of a man, who had no audible voice, and learned how he communicated.

 It was a day full of hope when we discovered that same voice for me.

 It was many days since my voice came to be heard, with many challenges in our way.

 But for today, this day, I honor my Mom for all the ways she loves me and carries the heaviness of my life in her heart, and thinks of my needs before her own… seeing the best in me… believing in me when most others haven’t… giving my life the necessary time so I can be all that God created me to be.  That is my Mom and her gift to me. I honor her and love her.

 Karly

 

 

Comments (3) »

The Art Exhibit

April 6, 2009 · Filed under Disability Awareness, Music & Art, Rett Syndrome, Understanding Rett Syndrome

 

How I paint with support-working on Blackhills Beauty

How I paint with support-working on Blackhills Beauty

My friend Ashley and I at the art exhibit
My friend Ashley and I at the art exhibit

Me with my art My Blackhills painting, a photo of Beau and I, and my Blackhills poem were hanging in the Art Gallery for 1 month.  I was able to go three times during the exhibit.  There were many people there during the opening ceremony, including our state representative.  It was impressive to see all the art, and to meet some of the artists. 

 

I haven’t painted recently, but I hope to today.  I don’t always feel like painting.  Sometimes it’s hard to get my hands to stop fiddling, and just move freely.  I’m relaxed this morning.  I have an acupuncture appointment today, which helps me calm down. 

 

Last week, a professional photographer came to my house to take my picture for a newsletter I wrote for.  They liked the photo of me and Beau so much, that they not only used it for the article I wrote, but also for their banquet invitations.  I titled it, “Quiet Moments”. 

Karly

 

Comments (2) »

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

Leave a comment »

Art From My Heart

January 7, 2009 · Filed under Music & Art, Rett Syndrome, Understanding Rett Syndrome, Writing Memoirs · Tagged , , ,

I haven’t shared much about my painting because it’s something new for me.  I haven’t always painted.  I just started last year.  I couldn’t hold a brush so we really worked hard to find a way for me to paint.  I’m not always pleased at what my paintings look like, but I keep trying. 

 I use a brush that is strapped to my right hand.  It has a wooden dowel with a hole for my brush.  I hold onto the dowel.  I can change the brushes if I want to easily…of course with someones help.  I choose the brush and they change it for me.  My hands aren’t able to control my movements, without support, so my friends support my wrist by holding their hand under my wrist.  It allows me to have more control. 

My Dowel

My Dowel

Supporting My Wrist

Supporting My Wrist

I’m excited because I had ideas in my mind for paintings, but I couldn’t make it look right.  My step-dad is an artist, so I asked Gregg if he could coach me, so I could make my painting look like the idea in my head.  I just finished my painting last week.  I’m so happy with it.  Gregg got it framed and I’m going to submit it to an art exhibit.  It will be on display for 1 month in March.  I discovered how much I love sharing my art.  It gives me another voice.  I use acrylic paints as well as watercolors.  The paint is put in an egg carton that doesn’t leak.  I choose the colors I want to use, and the person who is helping me puts a small amount in the carton.  Gregg helped me figure out what I should do first and second.  I used to try and do all the colors on the same day, it didn’t work well.  I have days when I’m only able to paint for five minutes, on other days I can paint much longer.  Sometimes my hands are too fiddly.  Somedays everything goes flying, but on other days I can focus more.   So to have a painting complete and in a frame is a miracle to me. 

The title of my painting is Blackhills Beauty.  I took my first roadtrip with my Mom, Gregg and friend Karen in September of 2008.  We went to the Blackhills in South Dakota.  I will never forget the pictures in my head from that time.  It was a hard trip because it was not easy to get around, but I have such gratitude in my heart for what we accomplished together.  This painting is one of my memories.  I have added snow, because I’m sure the trees are covered with it now. 

Love, Karly

Blackhills Beauty

Blackhills Beauty

Comments (4) »

Crying For A Good Reason

January 3, 2009 · Filed under Disability Awareness, Facilitated Communication, Music & Art, Rett Syndrome, Understanding Rett Syndrome, Writing Memoirs · Tagged ,

There were years where I cried for hours everyday. I feel sad remembering them, but I have thought about it a lot since then.  I have added information on My Rett Body page. I hope this helps other Rett families.

Love, Karly

Leave a comment »

A Holiday That’s Past

January 2, 2009 · Filed under Disability Awareness, Facilitated Communication, Music & Art, Rett Syndrome, Understanding Rett Syndrome

There was much to do at our house this past week. We had lots of company. We had two Christmas celebrations. My sister was home from Ohio with her boyfriend, his daughter and their dog. I always look forward to seeing her.  She has the life I thought I would want. I wanted to go to college, and be independent like she has been able to do. She is very talented. She can prepare meals, teach college classes and have her own home.  It is a passion of hers to play piano and viola, so she performs with a professional orchestra.  I thought I would want this for myself.

My life is very different than hers, but now I wouldn’t trade mine for hers.  I have found a place for my life in this world.  My place is not to teach at a University, but to simply share my story and experiences.  I have almost 16,000 hits to my blogpage as of today.  It gives me inspriation to know as hard as my life can be, that it offers hope and encouragement to others.  I am going to meet my new friend Jenni tomorrow, who met me from my blogpage.  For different reasons we are dependent on others, but our lives have meaning and we understand each other.

The best news that I can share today is that I have a copy of the first 10 minutes of my documentary.  I have been directing it, but it has lots of work to do yet.  However, I am so excited about this first part.  It gives me hope that it will be ready soon.  I can use it when I go and present to groups. It will help introduce me.  We are looking through many old photos, to find ones of me when I was younger for the still shots.  It will help with the script to have older photos.  Jennifer who is the young woman I chose to be my voice did a great job.  I love her voice.  My sister Leah said she always thought I had a deeper voice, if I could speak,  but I like the tone of Jennifers voice.  It is me!

I want to wish everyone  a wonderful New Year.

Much love,  Karly

Comments (1) »

« Previous entries
Next Page »