Archive for March, 2010

On The Radio

I heard from our friend Dave that he read one of my blogs when he was on the radio this week.  My friend Jenni had called in to pledge some money and got to talk with Dave. Here is the recording.

Love, Karly

My friend Amy and i on our patio last summer.

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New Occupational Therapist

I love this picture of the flowers on our deck last summer. It reminds me to be hopeful.

It has been a difficult time for my breatholding and hyperventilating.  I am frustrated. My Mom is frustrated and it’s difficult to live with. 

I have been aware that I haven’t known how to handle so many people who are interested in me.  Most of the time when people ask me questions, I can respond in writing through email or my blog, so to have people ask me questions and take time to talk with me is brand new.  It’s not something that I’ve ever had before.  What I didn’t know was how I would feel if that happened.  I always wanted it to.  I always felt so overwhelmed being ignored in a group, but to have people wake up and notice me now is wonderful and overwhelming.  I wasn’t aware that I would feel this way. 

It was this morning that I had an appointment with a new occupational therapist.  My Mom and I heard about her through my friend Elizabeth who also has Rett Syndrome.  Elizabeth has been finding help by some things the OT has given her to do.  It’s called a listening program.  I’ll be listening to certain tapes twice each day with headphones.  It’s supposed to help me calm down.  I would love to be more calm!  I wasn’t aware that stress could cause so many reactions in our bodies.  I am glad we met her and I hope that it will help me. 

My friend Kim from Toronto also sent me some information about a program she teaches which helps peoples heartbeat slow down when they are stressed, to the beat of music that is the tempo for a normal heart.  I need to get a stethoscope for that.  I have a hard time keeping things in my ears, so I’m not sure how it will work, but I am sure going to try.

I am feeling very fortunate about the great things that are happening in my life.  Even my producer Barbara was telling me that she needs time to adjust to things, even good things are a change.  This time has changed my life, because I went from invisible to the light of day.

 I send peace to this world today.

Love, Karly

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How To Buy My CD

It is ready for you to buy!  My CD, In My Own Voice, is at cdbaby.

It has taken them a while to get it ready to go, but you can buy a cd, or download my songs.  I hope it is a blessing to you.

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Getting Comfortable Being Seen

I like this photo. It's a relaxed day.

I have had a tough week.  I am celebrating and so, so happy, and I am also very unused to being seen.  I have not changed, but what has changed is how people are responding to me. I didn’t know what that would feel like.  I didn’t think it would feel hard, but I started to get very stressed last week.  My Mom, Gregg and I have talked a lot about the changes in our lives.  We did not want to be become a public family, but we wanted to have people respect those of us who live with great difficulties.  I have a hard time explaining just how unusual it is to be the same person, but to have people see me as some kind of expert now.  They have all kinds of questions, and when I get pressured in a group I feel overwhelmed.  I have had to take more time for myself in my room to relax.  It’s been a different experience and one that I know I have been led to by God.  I won’t get left alone by God, so I don’t need to worry, but I wanted to share that it’s been very challenging to have a life that became visible very quickly.

My story might be on TV this week too.  If it gets shown I will have my Mom put a link on my blogpage.  I feel grateful today because I have a voice, and I am being heard.  I hope that for those of my friends who are not yet able to communicate that I share your story as well as mine.  I feel honored by the people who are interested in hearing more.  I am finding ways to do that through my writing. I also have asked my parents to speak for me in some situations.  I feel fortunate today.

Love, Karly

leah and I have always loved our pianos. Here I am 1 1/2, and Leah is 4

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In My Own Voice

I have an announcement. We got our first CD’s in the mail yesterday!!!!! 

Here is my CD cover. There are lots of photos inside.

They are so beautiful. I love how they turned out. We will be selling them on cdbaby next week. They sent us an email yesterday saying they got the cd’s but it will take them 5-7 days to have them ready for you to buy. My Mom is going to create a link on my blogpage when it is ready. You can buy your own cd! It is so fun to imagine having a voice that others can hear. I titled my cd, In My Own Voice. I will be anxious to hear from you when you get yours.

Love, Karly

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In Spite of Rett

I am always honest on my blog because I think it helps everyone understand that my challenges with Rett are difficult too. This has been an amazing week in my life. I was interviewed for TV. They are going to do a five to six minute story when my CD is ready for sale. I have planned more details with my mom and friends Sandy and Margie for my CD release party. I met with my producer Barbara and funder Jammi with a local musician named Peter Mayer. I wanted to ask him about how he does his music CD’s and things about his business. He and his wife were very nice to me.

Peter Mayer was so encouraging

Maury Glover, Fox9

Maury was fun.

I wasn’t feeling great all week. It was Rett stuff. I was so hyper it was painful.  I couldn’t relax my body enough to stop hyperventilating so hard I couldn’t control my movements. It is so hard to know that I am being watched and have cameras taking my picture when I am holding my breath.  It’s one of the things that is so hard for me, that I hope they find a treatment for.  I was trying to relax and enjoy my week, but being so visible when I’m like that, is hard. I told my Mom that even though I was struggling with these things, I wanted to go ahead with the interviews. It is real.  It is what girls with Rett syndrome experience. I get excited about things that are wonderful and I can’t seem to control my responses. I was so happy for all the great things that are taking place, but it’s exhausting to be so hyper. I have another interview today and I feel much calmer.  I’m meeting Lisa Evert from the Mn Rett group who is gong to interview me for their newsletter for Rett families. I hope my story will inspire others who live near me. 

My CD is going to be ready next Monday.  I will see it next Thursday and the following week it will be at CD Baby. It’s a wonderful happy, time.

Love, Karly

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My TV Interview

I was interviewed Tuesday by Maury Glover from Fox9 News.  He and his cameraman Tim were with us for four hours.  I was so exhausted by the end.  We loved the time with them because they were so thoughtful and respectful to me.  I felt so honored by Maury because he was interested in helping my story be seen and heard by others.

Maury went with us to the place I walk every week

Tim was interested in getting lots of good pictures

Interview with Fox9

Maury asked me lots of questions, then my Mom

I felt so frustrated because I was struggling with hyperventilating and breath holding yesterday and still today.  I hate that!  I hate the feeling of being so out of control. It doesn’t look good on pictures or cameras so I feel self conscious about it.  I am trying to be comfortable with my body and its challenges, but it was hard for me to be seen by the world like that.  I am eager to share these photos with you.  I will post a link to the story when it is aired in the next two weeks.  It was a fun and adventurous day.

 Love, Karly

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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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