Archive for Writing Memoirs

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

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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

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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

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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 Year of Joy

November 3, 2009 · Filed under Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged ,

I have been thinking about all of the things that have happened in my life this year. If I had imagined how much our lives would change in one year it would have been too big of a dream.  I am so glad for all the ways I have been respected and valued. My courage to share my story has given me so many opportunities that I never dreamed about.  I am sitting here in our library with me Mom writing this message.  This year started with a lot of discouragement and frustration.  The person I was counting on for my daily activities, left without even saying good-bye, it was a time of great difficulty for our family. But because she did that, my Mom is now home with me and I have the freedom to write and share my thoughts everyday that I am able.  I know that God has given me many opportunities that I never could have had without my Mom’s support.  I was able to type with my caregiver who left, so it was painful to have one less person to communicate with, but God has changed my heart about her. 

 I want to talk about some of the things that have happened this year because we were able to be together more and I can communicate freely with my Mom.  I have written for my adult writing class whenever I am able to do so.  It was hard when my Mom went to work during the day and I could only write in the early mornings before she left, or in the late afternoon when she came home.  Sometimes I wasn’t ready to type during those times, so it was frustrating for me. Because I was able to write I was prepared for my class. I could write my blog whenever I was ready, and I prepared my talks for camp for three months before it started.  I wrote lots of cards and emails.  About 30,000 people have read my blog this year.  I could not have imagined that before this year. We went to Duluth on a great family vacation and worked on my documentary.  It is not finished but it’s getting closer.  Now I am starting to focus on my CD and getting it recorded.

1st meeting at studio

1st Meeting at Wild Sound studio

My visit to the studio last week was wonderful.  Matthew and Gerard are so respectful and excited to help me share my songs with the world.  They have talked to a woman who they want to produce my CD.  She is a musician who has some of her own CD’s and is very excited to help me share my songs.  I have asked my sister Leah, to record with me so her parts are for viola.  She and I have not done this before so it’s very exciting for me.  Matthew was very respectful of me and wants to make sure that this is done exactly as I want to have it when it is finished.  They are going to film the recording and create a documentary of the process.  They said my story is very important to share and they want to create this film so others can see more of who I am.  This is so wonderful for me.  I have worked so hard to share the songs that I have been given.  They are not my songs. They are songs given to me by God.  It is not hard to share something that God has given.  It is inspiring to me when I get a new song but it takes so much time to finish it.  The one I am working on now has taken over a year and it is not done yet.  But God gives me a good memory so I can keep the details in my head until I am able to share them with Karen, my music teacher.  It is hard work for her and I, but I know that I am suppose to share the gifts that God gave to me.  I am eager to do that now. I have more courage this year than I ever have before. It inspires me to continue writing about my life because I know that even if it only helps a few girls with Rett that I have done what I am suppose to do.  Thanks for the kind messages you send to me.  It helps me to know that I can give other girls I will never meet some hope for their lives. 

 Love, Karly

  

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Happy Birthday Mom

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

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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

 

 

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How Acupuncture Helps Me

September 24, 2009 · Filed under Rett Syndrome, Understanding Rett Syndrome, Writing Memoirs · Tagged , , ,

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Me feeling great today

I just returned from my acupuncture appointment. I feel so calm. I’m not hyperventilating and I am not holding my breath. I love how I feel. If I felt this good all the time, I would be so happy.

I have been going to acupuncture appointments weekly for almost a year. It has helped my mind the most. I feel so relaxed most of the time, when I have the needles in me. It helps my thoughts relax. They are often very active and I have a hard time focusing, but after acupuncture, I really slow down. For me, that gives me the chance to feel so content. It feels like I’m in a different body, one that is not struggling with so many movements and breathing issues. I love going to get acupuncture every week. It has changed how I feel.

People ask me how I sit still because I usually am so active, that I rarely sit quietly. I’m always moving. There are times in my acupuncture appointment that I am restless, but usually I am very calm. Sometimes I sit up then lay back down, but I rarely have any breathing issues while I have my needles in. But today I didn’t even sit up for 40 minutes. I didn’t even want to sit up after they got the needles out. Most of the time, I have about 25 needles in. Sometimes they fall out from my movement, but overall I feel so much better afterwards. I am glad we discovered it for me.

When I first started with acupuncture, I was really hurting. My body had so many hot spots, and then freezing cold areas at the same time. I was restless. My stomach was hurting. I couldn’t sleep well. I feel warm most of the time now. Last year my feet could be so cold they were blue. Or one of them would be really cold and the other hot. One of my ears could be freezing and the other one bright red from heat. It was miserable, but that is gone.

I thought this might be helpful to others who are looking for ideas for ways to help their Rett daughters.

Love, Karly

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Beau was feeling relaxed today too :)

Special Olympics beau

Beau loves to wear hats

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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

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My sister Leah and I at Pioneer Park

 

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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

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My View from My Eyes

August 23, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

16 months old with my glasses

16 months old with my glasses

 

 

My sister reading to me
My sister reading to me

My Eyes From my View

 Last week, I had a doctor appointment to see my eye doctor.  I have seen him since I was a baby. I got my first pair of glasses when I was 8 months old.  During this visit we talked about how people who have neurological disorders may see the world differently than others who don’t struggle with how their brain receives visual information.  My doctor told me that he has made some assumptions about what people with neurological challenges see, but he has not had much input from someone who may be able to share their experiences in detail.  He asked if I could write it for him, so I thought it would be interesting to put it on my blog, since other girls may experience the same thing.  I am really myopic, so my clear vision is within ten inches of my face. 

 I cannot wear eyeglasses for two reasons; one is because they feel so strange and irritating on my face.  I started wearing them as a baby.  I didn’t have the coordination to remove them when I was very little, so I couldn’t get them off. But now, on most days, if someone puts glasses on my face, I can’t get them off fast enough. The second is because I can’t handle what happens in my brain when I wear them. Recently I was able to wear sunglasses for about 20 minutes, but they didn’t correct my vision.  It felt good to not have the sun be so bright, but they irritated my face. 

 I wore eyeglasses until I was five. I couldn’t see any better with them on, than I could with them off.  I hated the way they felt, but I couldn’t remove them until I got a little older.  I took them off and chewed on them so they always had chew marks on the glass.  I lost many pair because they got dropped and my parents didn’t see them fall.  The funniest time was when I was about three.  I was in the garden with my mom in my wheelchair.  It was by the pond and there were ducks playing in the pond.  I had dropped my glasses and it wasn’t until my Mom saw the ducks playing with something that she realized it was my glasses.  They took them into the pond, and that was the end of them!

 My doctor said he has made some conclusions about how people with neurological disorders handle information they receive from their eyes.  He has assumed that for many people they can handle information if they don’t look directly at something, but they see it out of their side vision.  It is true for me. If I look directly at something it is only briefly, and only on days I am able to do it.  It is physically painful to be forced to look at something directly in front of me.  I am better able to handle it if it is on the side of me.  I often move my head back and forth in order to not get too much stress from looking directly at it.  It is hardest with people.  They often think I am not paying attention if I don’t look directly at them.  I remember many teachers and therapists insisting that if I didn’t look into their eyes, that I would not be paying attention.  Nothing could be farther from the truth.  I can handle most situations better if I am not forced to look at something. I can see much better and my brain is not stressed if I can use my side vision. There is something inside me that wants to run away when I am forced to look at someone who is inches from my face.  I am sure that many other girls with Rett struggle with this too.  If I look directly at someone it is because I am able to at that moment. But if I’m not able to do that, don’t assume I’m ignoring you.  I am very aware of everything that is happening around me.  If I am fiddling with something it helps to calm my brain.  I can do both.  I don’t need to be forced to look in order to understand.

 My eye doctor said he had some ideas about how some people with neurological disorders process information.  He described looking directly at something is like sand being poured through a funnel.  He said if it is poured slowly it goes through the hole, but if it is poured too fast it gets blocked. He is assuming that looking directly at something is like sand being poured too fast into the funnel. We are not able to handle that much information coming into our brains, but if we use our side vision the information is like sand that is poured slowly.  It comes to our brains slower, and we can handle it better. It is a good description for me. 

 Our world is so full of interesting things to look at.  The trouble is most of us are expected to be thrilled with lots of activity. To me it often gets overwhelming when there is a lot going on.  I can calm myself sometimes by playing with a fiddler.  Today I am able to focus if I have a fork in my hand.  It makes my brain feel relaxed.

 I went to a dance recently with some friends.  It was very loud and there were lots of people.  One of the men was in my face a lot. I couldn’t tell him to back off, and he was just being friendly, but I would not have chosen for him to be that close.  It was a very overwhelming environment, but I could handle it that day. There were a lot of lights, which distract me.

  I read something this morning with my Mom that Carly Fleishmann wrote. It was about how she sees things. She says that when she looks directly at someone, she sees a thousand pictures.  I think that’s a good description about how my brain sees things too, if they are right in front of me.

 Love, Karly

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An Adventerous Life

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

I went to church this morning with my Mom and Gregg and heard a message that inspired me.  It was about having a spirit that is open to God and receptive. It was the way he described being lead by God.  I have written a number of blogs lately that give you a better idea of my spirit.  I focused for a long time on my physical body, because I hope it helps others who love a Rett girl, but now I think sharing my spiritual life is what I’m suppose to do.  I loved the message today, because when I live aware of God, my life is so much more interesting than if I focused on my physical being.  Giving my life to God, has made my days so much better. I don’t believe that most of the great things that have happened this year would have taken place if God was not involved.  I have no authority on my own.  God has given me places to speak, and music to share and people to love. I would never have been able to make any of these things happen on my own, because people who have my level of disability are not seen as someone who has a lot to say and insights into spiritual things, let alone a relationship with God.  I want to say that even though my life is not easy that I feel content and have goals, and as I sit here today on our couch, I feel love.  I don’t need to have a lot of things, but when I listen to God, he encourages me to connect with someone and when I do it, it is so amazing what happens.  

Love, Karly

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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.

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A Life with Purpose

July 25, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged ,

 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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