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.
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.