Archive for December, 2009

Gifts For Rett Girls

I am eager to tell you that I have been thinking about Christmas gifts.  I have given them to my caregivers and family.  I love to be able to give them something from me because too much of my life is about receiving.  I feel a lot of contentment in my heart and I am so glad for my family and friends.  We will be having everyone to our house on Christmas day. 

I thought that might help to write about gifts that I have been given in my life that have helped me. It is a question that people ask me sometimes about what to give a girl who has Rett Syndrome.  They see what she does with gifts they give.  Sometimes what they know in their hearts about her intellect isn’t shown in her behaviors, so they give her something to stimulate her intelligence and she chews on it.  I am eager to tell you that chewing is not a sign of low intelligence.  I have given much thought to how to share this, so I hope it is helpful to you.  If people only look at Rett girls behaviors they will assume that she likes baby toys and things that are shiny or baby songs that entertain.  I have written about some of this on My Rett Body page, but since it is Christmas and there are usually gifts, it’s something I want to help you with. 

We are not going to be able to stop our bodies from doing their actions.  I drum on everything that my left hand can touch.  I chew on any thing that my right hand can put in my mouth.  It is so frustrating and very embarrassing for me because I know that people are assuming that these are baby behaviors.  It is not as it appears.  I can tell you that if I am stopped physically from chewing and drumming, it creates a lot of stress inside of me.  I can’t help those behaviors, but if my mind is stimulated at the same time by a book, or some conversation or a movie that stimulates my thinking, I don’t feel the stress of my behaviors.  When I was little I had a toy that spun and had a mirror on it.  I would spin it all day long as long as it was near me, but I didn’t want to do that.   I just couldn’t stop myself.  I couldn’t tell my Mom that I wanted to have it taken away.  There are times when it calms me to have something to fiddle with, but I don’t want to do it for hours.  I am asking you to think about that for your Rett girls because we will fiddle all day long if we aren’t interrupted sometimes, but our minds are the things that need to be challenged.  We are capable.  We are not little babies.

 I learn a lot on my computer.  I love to study things.  I enjoy learning about other cultures.  I love visiting with other adults.  Even if I can’t contribute a lot to their talk, I learn by listening.  I love music, but not music for little children.  I love classical music.  I love spiritual music.  I love country or anything that is calming.  So that is my idea.  Give us something to fiddle with that works for us, but keep our minds from going numb with boredom.  Give us a reason to hope this Christmas.  Give us your belief in us.

 Love, Karly

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Loving Christmas

The tree sits in our sunny window

I am sitting in front of our Christmas tree this morning and I thought I would write a quick message about how much I love this time of year.  I love it for our family getting together with others.  I love to think of gifts to give my caregivers and close family.  It is way to cold outside to be out there so we are cozy in our house.  But the thing that I love the most is our Christmas tree.  I love the lights.  I have written about this a lot in the other parts of my blog, but I thought it might be interesting to write about it again.

 I wonder if other Rett girls are as calm with sparkly lights as I am.  I can’t stop looking at them.  It is distracting to write when the lights are on, but it also helps me calm down.  Many times my breathing is normal when I am near the tree in the evening when the room is dark.  I think it does something in my brain to see lights.  It feels calm.  It is somehow relaxing to my thoughts to have lights on a tree that sparkle gently, and music helps too.  It is more than just having a great time with family.  It really does make a difference that goes deeper than my happiness.

 I wonder if you have noticed this with other girls who live with Rett.  I hope everyone is healthy and content today.
Love, Karly

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A Most Beautiful Wedding

My Uncle Allen and Kristin were married on Friday.  It was a great event at a beautiful place.  Leah flew home and we had a few days together.  It was so perfect on the day of their wedding.  They are so happy together and our family is happy too.  It was so fun to be there.  I stayed awake for it!  I even got to go to the reception for a while.  It was so perfect.  Kristin was beautiful and Allen was handsome.  Leah practiced my song to perform them for the ceremony.  Kristin walked down the aisle to Allen while Leah played my song For Strength.  It was so fun to hear my song played for their wedding.  I am eager to have my music be used by others. It is so fun to give my songs for others to use.  I had an awesome time with Emily staying in my suite.  Allen and Kristin gave us a beautiful gift of staying at the Lafayette Club.  It was the summer home for President Taft.  Leah read that while we were in our room.  It was a beautiful place.  I was so happy and I loved every minute. 

 Love, Karly

Leah played For Love and For Strength

Gregg was the pastor for their wedding

It was so fun to share this night with my family

My nephew Connor came with Sara

I wanted to stay up for the dance but I was too tired.

Emily is a wonderful friend to me. I love her so much.

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The Best News!!!

I am so happy today!!  I heard this morning that the grant we submitted two days ago for my CD was approved!  I am so happy because with the money we will be getting, I will be able to record the songs with a professional musician, my sister can come and play her viola and there will be a documentary of the recording and my story. We will be printing 1000 copies.  The dates we have set are in the end of January.

 I am so happy I could fly today!  This is my dream year.  I have had so many great things happen this year.  So many wonderful people have given me encouragement and I am grateful for them. My songs are about to be shared with anyone who is interested in hearing them.  My teacher Karen is coming today to help me get my ninth song finished.  She is so happy for me.  I am eager to help my Rett friends be seen in a different way by the world.  I hope they feel encouraged when they hear my music and don’t give up hope for themselves.  Everyone has a unique and special reason for being created by God and this is one of mine.

I am so glad the family and friends who have believed in me.

Love, Karly

I love Leah so much!! Her viola makes my songs sound so much richer.

When Leah came from the airport she, Karen and I worked out some of the details.

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Helping a Girl

I watched the Oprah show yesterday and I was so angry about the stories that were told. It was about girls around the world and how they are treated by other humans. I can’t imagine having their life. If my family lived in another country that treated girls the way some of the girls in this story were treated I would have died a long time ago. My purpose for being on earth would never be lived out. I am sad to think of the torment that so many girls and women live in today on this earth. I have prayed for them every moment since I heard some of their stories yesterday.

Oprah has a lot of information on her webpage for us to help. I don’t have a lot of money so I tried to think of ways that I could help them. I talked with my Mom this morning and she had an idea of ways that I could get some money to donate to them. I have had prints made of my painting, Blackhills Beauty. If I sold them I would give most of the money to the girls who need help. I want to sell them for 25 dollars, and give $15 of it to help others. I have 25 prints for sale. If I sold even 10 of them that would be 150 dollars. Would you be interested in buying one of my prints so I can help them? My email address is:  If you would like one we will send it to you. My Mom is going to help me find a way so it can happen real soon, but if you are interested send me an email and I will keep your information so when we are ready to sell them, I will let you know. If you have a girl or woman in your life today, please be kind to them. We need kind people in this world to do something about the unkindness that is also here and hurting others.

Blackhills Beauty

Love, Karly

Getting Ready to paint with Bethany

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My CD Update

Our friend Margie helped us get our grant papers ready

This is an exciting day.  Our friend Margie came today to help us finish the papers for the board meeting tomorrow.  It is so exciting to know that there are many people who are interested in helping me get my music recorded.  We have some dates set up for the end of January at the studio.  I want to share this so it will be fun for all of us when it actually happens. My sister will be playing her viola so when she is home this weekend, we are going to be working on her part. She is so loving to me and I am excited that we can share this time together.  She is my hero.  When I was younger I wanted to have her life, but now I am peaceful about my own. 

Love, Karly

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