Posts tagged Jeff Dunn Photography

Becoming Visible

I have written a lot lately about the things that are happening in my life.  I can’t imagine it being any better than it is right now. I have had so many great things happen to me in the last few weeks.  I have had contact from a local TV newsperson.  He wants to do a story on me this week.  I asked him some questions on the phone.  I asked him what he is going to do with my story.  I wanted to tell him that the most important thing to me is that people understand that those of us without a voice that can be heard with people’s ears, may be intelligent and aware of everything going on in our presence and around us.

I have been so fortunate that I have people around me who have given me a chance to be who I am and not get stuck on my limitations.  It has freed me.  It has opened up my heart and my health challenges have gone.  I don’t need to tell you how hard some of my days are, because it will always be that way with Rett Syndrome, but if the purpose of my life is not just to struggle with those challenges, it gives me meaning.  It allows me to have hope.  It allows me to be seen for my talents, not just my struggles.  I have heard that the Rett research group from our state will be interviewing me this weekend too.  They are going to share my CD story with the Rett families in our state.  I hope that other families can help their girls find their purpose in this life.  It is not an easy life.  It takes a lot of work.  Sometimes it is really scary, but I hope that my story can encourage others to believe in their girls.  It took my Mom and I a long time to find a way for me to communicate.  I was ten years old before I typed my first word.  It wasn’t fast or easy for me, but it opened up the possibility that I was intelligent, and I could eventually share more. 

 It is hard sometimes for me to become visible when my body and movements draw attention to me. It makes others uncomfortable.  They don’t know what to do with someone who is turning blue!  It makes them think I am dying!  It is hard when I chew on my bandanas because it makes me appear like I am a child.  But, that’s just my body, it’s not my mind.  I was asked by Jeff Dunn if I would be willing to help him with a training video he was working on for photographers and people interested in hiring him for their photos.  I think it was an honor that he wanted to interview me.  Unfortunately when they came with their cameras it was a day when I was hyperventilating constantly.  It was frustrating for me but I can’t control it.  He said he wanted to come anyway because he wants to deal with real life, not false life.  I told him during the interview that I was so glad that he saw me!  That he made me look beautiful.  That he wasn’t uncomfortable with my movements or my drool.  It was wonderful to become visible.  That’s what he made me.  I became visible in a beautiful photograph.

I will be getting my CD in the next 10 days!!  It is so beautiful. I am so happy with the way it sounds.  I have a chance to help my Rett friends I my music.  I want this world to know we are here.  We are here and we are intelligent.  I send you courage today.

 Love, Karly

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When the Days Are Good

During the photo session I was so relaxed that I curled up in the chair.

I like this one of me. I am calm. It doesn't happen often that I am still.

I have completed my part in getting my CD ready.  I have written all my song descriptions, the information I have selected to put on my CD cover, the photos and the song order are all done.  The mastering is taking place this week, so my CD will be ready to be copied after that.  The cover design will be done soon.

 I feel so fortunate.  I would never have imagined this happening to me.  I don’t forget the days that I spent wondering if my life was worth living.  I remember how it felt to be unnoticed, and undervalued.  I don’t forget how it felt to be isolated in my body because I had no way to communicate my thoughts.  I don’t forget how it felt to not have friends who knew me.  Who knew that I am capable of intelligent conversations. I want to tell my friends who are living those days right now that I understand and I believe in you.  I believe in your ability to be a contributing person to your family, and your school, and your community, your church.  I have been given the opportunity to share my life with the world this past year.  Because of that my life has changed.  I never knew that I would be given a voice in this lifetime.  I am so glad that my story is helping others wake up. 

 I know that this is not me that has made this happen.  I trust God.  He is my best friend.  He knows me.  He knows who I am apart from Rett Syndrome.  He doesn’t see my life as a burden.  My family has given me freedom to be the person I am because of great sacrifice on their part.  I know that I am loved.  I know that I will have an opportunity to help change my world because of my Mom and Gregg’s willingness to give me opportunities.  I am fortunate and I am grateful.

 My sister Leah reads this poem that I wrote, on my CD.

I Am

 In the quiet of my heart I am slow

 I breathe deeply

 I sit quietly

 I think freely

 I do not struggle

 I love deeply

 I contribute

 I participate

 I speak in ways others can hear

 I am more than my body

 I am

 Love, Karly

This photo was taken of me and Leah about 12 years ago.

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CD Mixing Day

It was a snowy day. We all wore our matching shirts.


I went to Wild Sound Studio on Monday with my Mom and Gregg to help with the mixing; I have never done anything like this before, so it was an interesting time.  I have learned so much about how to record songs.  I haven’t been able to stop thinking about it, because it has been a gift to me.  The people who have been involved in helping my music get recorded have been so kind and thoughtful and respectful.  Our photographer, Jeff Dunn, was such a gentleman and he is so eager to help us. I love his photographs of me.  Barbara McAfee helped me find my voice in my music by making sure I was heard throughout this process.

We all wore our Wild Sound Studio tshirts that day.

Gregg helped me walk around the studio. I get so sore from sitting in my wheelchair for a long time.

I listened carefully with Barbara and Matthew and decided what I liked best.

 It has been so fun to imagine people hearing my music.  For those who have heard it so far it has been a wonderful experience.  I don’t know what will happen next, but I know that my CD will be ready very soon.  It has been a busy two weeks and I’m excited about sharing it with you.  My life will be changed because I am heard in a new way.

 I was at the Art St. Croix meeting this morning.  I am on the advisory committee.  They are going to have my CD presented at the art gallery exhibit.  I think it will be done by then and it will be fun to share it with our community. 

Love, Karly

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The Week After

I like this one. It doesn't show my movements.

It has been a very wonderful and amazing time for me.  It was a week of many emails and responses to my blog.  It was fun to have Leah here until Sunday.  I love to spend time with her.  She added so much joy to the recording sessions.  To have her read my poems created a voice for me that I love.

 We have a rough copy of the CD and I want to tell you that it sounds exactly as I heard the songs when they came to me over the past ten years.  I composed them for piano because that is the instrument I heard, but to have Leah’s viola playing was perfect.  She added so much richness to the piano parts.  Gregory Theisen gave new life to my songs.  I feel so honored and excited.  We are going today to look at the photos taken by Jeff Dunn.  He was here at our house last Monday and has his photos ready for us to choose.  We will be going back to Wild Sound Studio next Monday to help with the finishing part.  It is a fun time.  I am still perfecting the song descriptions.  I’m struggling with it because I wrote some of the songs years ago and I remember them well, but it’s hard to write a lot of interesting details about them.  It’s easier for the newer songs.  I loved working with Matthew and Gerard at the studio.  They are so gentle. Barbarba McAfee is so thoughtful to me. She has been a true friend.  I feel so glad that she is part of my CD. 

I loved this one of Mom and me. It shows how we spend much of our time. You can't see my keyboard but it's always there!!

This keyboard is my voice. I use it with a few people but the best with my mom and Amy. It has freed my spirit to be able to express my thoughts.


This is the piano we have had in our living room since i was a baby. I love this photo because even though i can't play the notes myself. I have drummed the keys all my life. Jeff felt like this photo was my hands drawing the music out of the keys. I like that image.



My mom took this photo last summer. Jeff changed it to a different color. We love it. It might be on my CD cover because one of my songs is My Pony, My Beau. It is so relaxing for me to spend time with him. I miss the summer days.

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