Archive for Writing

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) »

Happy Birthday Mom

October 16, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

55

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.

I love you Mom,

Karly

 

 

Comments (2) »

My Trip to the North Shore

September 14, 2009 · Filed under Caregiver, Disability Awareness, Rett Syndrome, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

Gregg, Mom, Karen and I next to Gooseberry Falls

Gregg, Mom, Karen and I next to Gooseberry Falls

My Mom, Gregg, friend Karen and I just returned from ourvacation on the North Shore of Minnesota. We had a wonderful time there.  I had never been to Duluth so I was amazed.  We stayed in a house that was beautiful.  I slept great there and was so calm.  I didn’t have nearly so much breatholding and hyperventilating as I do here.  It seems that being by a lake helps my body to be calm.  I loved it. I want to feel that way everyday!

 We went to a place called Gooseberry Falls.  It was amazing.  I could not see the waterfalls, but I could hear them, and I have seen the photos that we took. They are so beautiful.  There were trails that I could get pushed on with my wheelchair, so that is what we did.  I could hear the waterfalls. It was so perfect.  I think that was my favorite place.

 I also went on a boat tour of the harbor.  It was so interesting listening to the boat captain explain about everything that we could see.  It was so sunny and relaxing.  I learned a lot about ships and the Lake Superior that we were on.  It is a fresh water lake, but it is the deepest of all the great lakes.  It was cold in the water, but I was able to walk on the sand with Gregg’s help. It felt so good.  I wanted to sit down and play with the sand, like I have always done my entire life.  If I can touch the sand I sift it in my fingers.  It is fun to feel it, but I can’t stop my hands sometimes from putting it in my mouth.  That is frustrating because it calms me to play with sand, but it is gross in my mouth.

My feet walking in the soft sand along Lake Superior

My feet walking in the soft sand along Lake Superior

Gregg helped me walk on the shore

Gregg helped me walk on the shore

 

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

The boat was wheelchair accessible. It was very relaxing

The boat was wheelchair accessible. It was very relaxing

It was a trip that was much shorter because it was not so far to drive.  I loved it there.  I hope we can go again next year.  It is not impossible to go on a trip when you have a lot of needs, but it takes a lot of work for my parents and friend Karen who came with.  They worked hard to help me experience something new.  I am so glad for their love and support that gives my life adventure and experiences that I could never have on my own. It is always harder to be away from home, because things are set up so well at home, but when we are away I experience so many amazing things.  I love to be able to travel.

 Love, Karly

 

My Mom and I on the tour boat

My Mom and I on the tour boat

Gooseberry Falls, my favorite part of our trip

Gooseberry Falls, my favorite part of our trip

I felt so calm

I felt so calm

Comments (5) »

Having a Purpose and Direction

August 11, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

This is a tribute to Eunice Shriver who spent her life giving dignity and purpose to people who have disabilities. To honor how she spent her life thinking of what she could do to make a positive difference in this world, and taught her children and others how to be less selfish and more honoring of others everywhere in this world.  I never knew her, but I respect her vision for her life and what she has left behind that gives many of us hope.

 I have been thinking about something this week that I think will help me and may help others.  It is related to my talks at camp about being created for purpose by God.  If we determine with God what we are to do for our lives and don’t have any direction we can lose the vision he has given us.  I don’t want to lose the vision that I have through getting too busy with the things that make life hectic.  If all I did was the things I need to do everyday to be healthy it would be an unfulfilled life. 

 I have so many activities to keep my body well but I still struggle most days. So if I depended on  those things for meaning in my life I would be very depressed, because no matter what I do I can’t stop the hyperventilating or breath holding or physical pain that I experience in my back and neck everyday. Since I try not to focus only on those things I have a life that I love.  I plan on living it fully while I am here on earth. It is not always easy to push myself, but if I sit around and do nothing, my life is pointless.  I try to get up everyday and pray and ask God what I need to do that day and then I do it.  God knows me better than any human so he won’t ask something of me that is impossible for me to do.  It brings me so much joy to know that even I can be helpful to others.  I don’t need to be useless and just keeping myself occupied. 

 Some of the ways God has directed me is through encouraging others.  Sometimes it’s through my blog, or something that I write for my class, and other times it’s sending an email to a friend who is lonely or isolated.  Sometimes it’s going to visit someone who doesn’t have company, like my Grandpa when he was in the nursing home.  Other times it’s creating a card with a photo of something or someone to surprise them and remind them of something positive in their life.  Sometimes I am inspired to call with my Mom’s help and we put the person on speaker phone so I can hear, and then I am able to type my message and my Mom speaks it out loud.  Yesterday, one of my new friends at camp and I chatted on Facebook for a while.  It was great for both of us, because she uses a keyboard as well, so we were able to communicate that way.  If I give someone one of my paintings it is something I am inspired to do if they would be blessed by having it.  

 If I live with this in mind, my days are meaningful and I have things to do that matter to me, and I hope to others.

Comments (1) »

Going to Camp

July 5, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged

I am leaving tomorrow morning to go to camp for five days.  My family is coming with me, and two of my caregivers, Ashely and Emily.  I am very honored to have been asked last winter if I would be the chapel speaker for the adults with physical disabilities.  I have four talks ready to go and I have asked my mom to read them for me.  I don’t feel anxious about it, but I am very happy.

The camp directors have been so encouraging and excited to have me come and talk. The theme for the camp is “Molded for a Purpose.” I thought it would be good to share some of my beliefs about how God molds each of us for a purpose.  I shared this with the director last winter.

Love, Karly

God has a purpose for every life.  If we ignore the purpose He has given us, our lives are so much less than they could be.  For those of us who live with great challenges in our bodies and minds, it may be harder to find the purpose God has given to us.  We can get so caught up in anger and sadness and isolation that we don’t give God room to help us figure it out.

 I don’t believe God has created us to have accidents and birth defects, and illnesses.  That is something that has happened because we live on this earth and are not yet in heaven.  There are so many things that are not ideal here on earth, but the great thing is that when we allow God into our challenges we are even more blessed than the average person would be.

 I have a wonderful relationship with God.  He has given me perspective that I doubt I would have if I were a typical person.  One of the things He has created me to do is to share my story and give people hope and insights that only a person living with my disorder can give.  He has given me the gift of music.  I have been able to compose the songs He has put into my mind.  Through great effort, my music teacher and I, bring that music out so others can be inspired.  I hope they are encouraged to follow their hearts passions, by hearing my songs.  Because of God’s place in my heart, I feel great love and compassion for others.  While that may not seem like a gift, it is one of the best things to share with others.  It is simple.  It warms their hearts to love.

 I have never said a word on this earth, other than the sound a cat makes, when I was a baby, but it hasn’t stopped God from working through me.  God is my strength.  He has molded me for His purposes, and I find my best days are the ones I wake up and ask God what He wants me to do that day…and then I do it.

Comments (2) »

Sending Grandpa Home

June 26, 2009 · Filed under Poetry, Rett Syndrome Intelligence, Writing, Writing Memoirs

Grandpa, Leah and I when I was one month old

Grandpa, Leah and I when I was one month old

 I wanted to let everyone know that my Grandpa died last Friday night on June 19 at 11:30.  His children were all around him.  I am so glad that I got to spend his last day on earth with him.  I look forward to being free like he is now, of the things make this life difficult for me.  I know we will have a long hug, because in this life I was not able to hug him.  I love the Grandpa I spent the last two months with.  God’s peace Grandpa!  I know you know what that means now.

Love, Karly

 

 I am taking a writing class.  We are focusing on poetry right now, so I thought I would write a poem about my grandpa.  Here is my rough copy. After class today I will try and post my edited version. 

 

                              Sending Grandpa Home

I came to earth with challenges you had never seen

I’ve lived a life apart from yours

I understood what you said to me but did not answer with language you received

You felt pity, I felt the same

I wanted a Grandpa who could play

 

In your final months I saw a change

I felt your love

I saw your pain

You tried to understand

You heard my typing and questioned me about who I am

I know you saw my chair, but it no longer scared

You saw me

We could be real

We saw each others eyes

I will see you soon Grandpa

I will see you soon

 Karly W

 

 

Comments (3) »

My Documentary

June 5, 2009 · Filed under Rett Syndrome, Writing

I have an announcement to make about my documentary.  It has been a long time getting to this day, but it is close to having the first 13 minutes ready!  Our film guy, Dan, is working on putting some more scenes into the film and my song For Strength.  When that is done it will be ready to show.  I hope to have it done for camp in July.  It will help introduce me to groups, so I don’t just show up and have someone start talking about me.  That is always awkward. I have worked hard with my Mom and Gregg and Dan to get it just right, because it is about me.  I want to make sure that it is accurate.  I wrote the script over a year ago. 

 The woman who I chose to be my voice, has a brother who has autism, and went to school with my friend Elizabeth.  We may make a longer DVD at some point, but for now, I’m just going to have the first 13 minutes.  I hope it helps people see those of us who are non-verbal in a different way..that our lives are not all that different on the inside than others.  It will be fun to share it with everyone. 

Love, Karly

Comments (3) »

Update About My Silence

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

Comments (1) »

My Writing Process

January 13, 2009 · Filed under Facilitated Communication, Rett Syndrome, Writing, Writing Memoirs

I thought it might be interesting to share how I write my blog.  It takes three of us to get it done right.  I usually tell my Mom that I have a blog ready to go.  We wait until either Gregg or one of my caregivers is available to write down what I type.  My Mom is my facilitator while I type.  She says my words out loud and they are written down in my notebook exactly as I type them.  Sometimes I type so fast that the person that is writing has a hard time keeping up, so I have to pause.  I title my blog at the beginning of my writing.  When I am done typing, my words are read back to me.  If I need to make changes, I change them at that time.  When I am satisfied with the piece, I then wait while my Mom types my writing into my computer.  When she gets done she reads it back to me and my writing person helps with the computer.  It is at that time that I decide where to put my paragraphs and commas and quotes.  We then decide which categories to post it under on my blogpage and if it should have any extra tags. 

There you are.  It is exactly the way I want to have it by the time you read it.  I try to write in the mornings because that is my best time. I get so tired later in the day, so I try to do it before we get going in the mornings. 

I hope it is warmer where you are today.  It is 18 below zero here.  My horse Beau loves the winter and is bucking and running around between times when he is eating hay.

Love, Karly

Comments (1) »

Putting My Thoughts Into Words

January 9, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

This has been a great day.  I have started thinking about writing a book recently.  I was encouraged by a number of people to share my experience living with Rett Syndrome.  I love to write, so putting my ideas into words is easy for me. 

I have been asked a question about how I learned to share my thoughts like a typical person who is verbal.  I have listened to people talk my entire life, so when I finally had the chance to communicate at the age of 9, it was natural for me to imitate the language I had been hearing.  I heard everything spoken around me. I didn’t need to be taught how to form sentences.  I had so many sentences in my head waiting to come out.  If I needed help it was to find a way to get those sentences out of me. 

Back to my book!  On Fridays I have a small class I attend for writers who have a disability.  I was the only student there today, so I asked my teacher Libby how I should go about writing a book.  We spent the next hour coming up with a rough idea of how to form a book.  It is so exciting to me to think that someone like me, who has struggled my entire life to be understood, could have enough to say that I could put it into a book. 

I continue to give a lot of time to just having my physical needs met, so somedays I am too exhausted to write much.  On most days, it brings me great comfort to even find a little time to share my thoughts.  If you have any feedback for me, I am anxious to hear it.

Love, Karly

Comments (2) »

« Previous entries
Next Page »