Posts tagged hope

Having Big Dreams

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


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


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


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


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




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My First Election for President

This has been a great week for the world. The President that was elected was the one I voted for. I did an absentee ballot, which is a good thing because I was too sick on election day to go vote. I’m excited about Barack Obama because I think he will have an understanding of the challenges many of us face in this country.

I don’t know much about politics, but I know that my life is different today than it was a few years ago. For those of us who are not wealthy and are dependent on our government to help meet our daily needs, when we can’t do it ourselves, this is a great week. It seems the funding for some incredible opportunities for people with disabilities has stopped. It may have anyway, but I feel more hopeful today because I have heard the president during his campaign, and how respectful he was, and I feel hopeful for the world. I like the way he listens to people and hears their story. I hope that he is able to do that for people like me, who are not a loud voice. I know he knows what it is like to be judged by his body, instead of who he is as a man. In that way, he understands.

It helps all of us to be united, if we hear each other, because we are not that different. I think anyone who has faced prejudice knows what it’s like for others who face it because of something they cannot control. I heard from a wonderful woman in Michigan who shared with me how sad and difficult her life is because she is noticed and judged and watched and questioned wherever she goes. It is not because she has an obvious disability, it is because she “lives in a black body”. I never thought about it before, but those who live in bodies that stand out in the crowd, understand each other. In her case she works in a place that is mostly white. I live in a body that is noticed because of it’s challenges, but we understand each other.

I want to give hugs to everyone today who has felt isoltated overlooked ignored, underprivileged or judged because of the body they came to this world in. I love this day for the hope it brings to our world.

love, karly

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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.


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