My Year of Joy

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


3 Responses so far »

  1. 1

    Sandy said,

    you are such a blessing and inspiration to so many people. It makes me so happy that you have had such a phenomenal year!! Your story, your music, your paintings, your writing and your love are all wonderful gifts and it is a joy to see you sharing them with the world!! I am convinced there is nothing you cannot accomplish!!! You are a truly amazing person.


  2. 2

    Darby (Jenna's mom) said,

    Hello again Karly! I wrote to you a few months ago when I first found your blog. I must confess, I haven’t been able to keep up with it lately. I just got laid off from my job and have surprisingly been able to find so much joy in being home again. I really missed spending time with my 4 kids. I don’t know if you remember, but I have a little girl, Jenna, who will be 4 in December. She has Rett Syndrome. I think I commented on the part of your blog that talks about what you go through when you sleep and when you wake in the middle of the night. As soon as I read that part of your blog and the part about how unfair it is that people just seem to think that because you can’t talk or communicate “normally” that you’re less of a person mentally, I knew I had to talk with Jenna about it. That night I took her to bed, laid her down, and as she got herself comfortable I told her all about what I had read during the day and all about you. She couldn’t stop smiling. I felt I needed to reassure her that we know she’s incredibly bright and we know she understands everything. I also wanted her to know that we love her dearly and that we know she loves us too. I remember reading that you felt frustrated because you had difficulty letting others know how much you love them and that stuck out to me as a very important thing for me to get across to Jenna. The last few months have been great for her. She really seems like she’s opening up and wanting to do new things. She loves school and has a new friend that happens to have rett syndrome that goes to her horse therapy with her. I guess I just want to tell you how greatful I am to have someone out there like you that can put your fears aside and put your emotions out there for everyone to see, to feel. It means so much to me to get that insight into what Jenna might be feeling and I think it’s made me even more aware of what she needs and wants. We have whole conversations every day and when people ask me why I do that when Jenna doesn’t respond, it just kind of makes me laugh because she IS responding and THEY don’t get it. So Jenna and I have the last laugh. Keep up the great work Karly and know there are sooooo many people including myself and Jenna that love you and know you’re a beautiful person! *hugs from all of us*

    Jenna and Darby

    • 3

      spiritdances said,

      Hello Darby
      I am so honored by your beautiful message. You are so thoughtful to let me know how my story has changed your life with Jenna. I know she is so happy that you believe in her. You are helping her believe in herself. I am sure that she will be able to communicate more easily someday. There is so much more to offer now than there was a few years ago. I hope you are able to help her express herself. But in the meantime, your love and faith in her will keep her encouraged. She will be able to show you who she is by not getting depressed and lost inside herself. Thanks for hearing my words.
      Love, Karly

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