Archive for July, 2009

A Life with Purpose

 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 am so Satisfied.

This has been a wonderful week. I feel great. I visited my friends who are twins with Rett Syndrome. It was so great to see them. They are healthy and doing great. They just got back from the North Shore of our state. They both felt so content while they were there.

I wanted to share something that I think is so important for my life. It may also be helpful to you. While visiting with my caseworker this morning, I realized that what everyone needs for their own life is purpose. We were talking about how little there is to do in our community that is specific for adults with physical disabilities. It seems that most of the activities offered to adults with disabilities is for anyone with any type of disorder. We are all grouped together. They believe that I would be interested in going to the fair, or making brownies from a mix, or shopping once again, or bowling or doing something that involved a craft that I can’t do. They don’t make any activities for adults like me who have high intellect and yet require much assistance in order to be involved. I can’t go anywhere alone. If I didn’t have the ability to communicate my needs, I would be in a program for adults that have mental disabilities because of my diagnosis. I know of others like me, who struggle to be understood and are very isolated even when we are with a group because if we don’t have someone with us who can help us communicate, we go unheard and misunderstood.

I have so much joy today because I am able to be at home with my Mom and writing this during the day, instead of a program that would have drained my life right away. I think of my other Rett friends who can communicate and even though we struggle with our bodies, we are all intelligent. I know there are others who are capable like we are, and are being believed to be intelligent even though they are yet without a voice.

I encourage anyone who has someone they know with Rett Syndrome, to not give up on them. I am so much better now that I can communicate in my health and my mind and my spirit. I don’t believe that they people who make decisions for those of us with great physical challenges know how to best help us. It is individual and it starts with those who are closest to us believing in us, and giving us opportunities to increase our understanding of this world we live in. Those who help us discover what our gifts are, and give us companionship along the way.

My heart is content today, and I thank my family for giving me a great life, one that has purpose, and is full of love. I send you peace today. Love, Karly

Here are some of the things I did this week:

Beau and I hung out in his barn

Beau and I hung out in his barn

I went to Lauries house and rode Chester. They watched mydocumentary with me.  Chester and Laurie are in it.

I went to Lauries house and rode Chester. They watched mydocumentary with me. Chester and Laurie are in it.

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I Sit Here Smiling



Here are some of my memories of camp in Iowa.



There was a dance

There was a dance

I have never been in a golf cart.  I loved it.

I have never been in a golf cart. I loved it.

Emily has a rare talent.  The basket is filled with my laundry

Emily has a rare talent. The basket is filled with my laundry

Ashley was so kind to my new friends

Ashley was so kind to my new friends

My Mom read my script.  I had worked on it for 3 months in advance.

My Mom read my script. I had worked on it for 3 months in advance.

My Mom and Gregg love me so much. I was so glad to be there with them.

My Mom and Gregg love me so much. I was so glad to be there with them.

I was able to be in the last worhsip time with my friend Deb.  Scott played such beautiful music.

I was able to be in the last worhsip time with my friend Deb. Scott played such beautiful music.

I have joy today.
Love, Karly

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Afterthoughts From Camp

Afterthoughts from Camp

 Since I have been home from camp, I have received a number of emails and responses to what I wrote about camp.  I am sorry it is over already.  It was and unusual and wonderful experience for me.  While I was there I got no weird stares, no disbelief, only respect and love.  I wish that for everyone. Unfortunately, in many places in this world, to be respected and loved you have to be able bodied, good looking and have a career that others admire. 

I am so glad that is not all there is. I don’t believe for one minute that any of that will matter when we look on our lives after we are gone from this earth. What I do know will matter is how loving, how respectful and how kind we were to those around us, especially to those who go unnoticed by most people in this world.  I saw beautiful people at camp, with beautiful hearts, hearts that would never hurt someone intentionally.  I saw kindness from the caregivers and others who were there to provide support, as well as the adults who live with a disability.  It is not typical for those of us who have a disability to go about our lives and be valued for who we are, not pitied for our disability.

 On Monday, after we returned from camp, my Mom and I went to pick up some photos that I was working on for my friends from camp.  As we entered the store we were gawked at by six people standing together as we tried to enter the restroom.  Not because we were all that interesting, but because they were in the mood to stare I guess. I didn’t experience this at camp for a week, so it was rather shocking to both my Mom and me.  We were just trying to get our tasks done, not be stared at by strangers.

 I am glad for my time with others who live unnoticed lives for who they are, and my family who loves me because of who I am. My heart is tender today and it feels sad.

Love, Karly

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With Gratitude and Peace

I got home with my Mom and Gregg last night from camp.  I have been trying to find the words to share with you about what it was like for me there.  It is impossible to express how much joy I feel to be honored in that way.  There was so much respect and kindness and love from everyone I met there.  My health was great, I felt good and I slept well while we were gone. 

For those who have a life that is noticed by others for their wit and charm and intelligence, it may be difficult to understand just how amazing my experience this week has been. I am not noticed for any of those things to the average person. My movements, breatholding and chewing bring attention to my disability instead of my heart. I have never had four speaking times together in four days.  Dave and Margie, the camp directors believed in me.  They gave me so much respect. God was evident to everyone there.

I need to give you a word picture to help you understand what it’s like for me. These are some words that express my gratitude to God and all the people who were involved in making it possible for me to present my message.












more tears

tears of joy

open hearts

willing spirit

tender moments



laundry angels


best friends






great joy


I couldn’t have done this without the help of two wonderful, kind and loving young women who went with us to camp. Ashley and Emily were perfect there. They were so thoughtful and excited for me.  We all were blessed so greatly.  If I didn’t have a Mom and step-dad like I do, none of this would be possible.  It is because of them that I had this opportunity to share a message that I was given by God. I am so thankful today for what happened and how God used my story and my life to give hope and inspiration to many people.  It’s not because I’m so amazing, but because I’m willing that this happened. 

I sit here smiling.Love, Karly

My favorite memory

My Favorite Memory-I sat on the deck of my beautiful cabin and communicated with some other adults who live with great physical struggles and depend on devices to communciate


The artist Bill Butler created this painting with the help of every person at camp-he was so loving

The artist Bill Butler created this painting with the help of every person at camp-he was so loving




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My July 4th Birthday

I had my 24th birthday on July 4th.  My family was here with me.  We had a small gathering to celebrate my birthday.  Since I was a baby, we went to the parade on July 4th, and then had a family gathering.  Since it was so nice we were able to eat on our new patio.  I planned the menu with Mom.  It was sweet corn, my Mom’s potato salad, a pesto pasta salad, baked beans and fried fish that my step-dad Gregg caught on his fishing trip.  It was great!  My Uncle Allen made it so perfect.  We all loved the fish.  I was able to eat some of the meal, but I planned it so everyone would like the food.  Most people are able to eat dairy and gluten, but I love smelling what I couldn’t eat.  Mom and Gregg picked a bunch of strawberries last week, so we had strawberry shortcake for dessert.  It was great!

Here are some photos.

Emily and me with our sunglasses

Emily and me with our sunglasses



Allen and Kristin are engaged!

Allen and Kristin are engaged!


My Mom and I

My Mom and I

Thanks for the fish Gregg!

Thanks for the fish Gregg!






On Our Patio

On Our Patio





My grandparents

My grandparents


Bethany and Suedi came to visit me.

My friends Bethany and Suedi came to visit.


The Fed-Ex truck came and delivered flowers from my friend Ashley.  That has never happened to me before!

The Fed-Ex truck came and delivered flowers from my friend Ashley. That has never happened to me before!


My sister Leah was not here, because she came  home for Grandpas funeral, but she sent me some amazing gifts.  She sent me a new sound system so I could listen to my music and books on tape better.  She also has an Ipod coming that she is putting lots of fun music on. She and my Dad bought it together.  I am so glad they’re supportive of my interests.  

My Mom and Gregg got  a new Flip Video camera so we can record more things and make our own videos.  I will post something soon on my blog after we get it figured out.

I shared my documentary with my family for the first time.  We have been working on it for a year.  It is not perfect but it is getting close.  I will be sharing it at camp.  I was so appreciative of my families comments about the film after they watched it.  It is eleven minutes long.

Happy 4th of July everyone.

Love, Karly

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Going to Camp

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.

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