The days are so dark right now, but the sunrises are so beautiful out my bedroom window this time of year.
I have been so glad for some things that have happened this year. I was talking this morning with my Mom and Gregg and I asked them to remind me of all the great things that are happening in my life. I thought it might be helpful if I shared some of them on my blogpage.
I am eager to have you know that I decided to share these things to encourage you to believe better things for girls with Rett Syndrome and for everyone. I believe with all my heart that every person has something important to share with this world. For some it might be more public, and for others it will be their family or close friends or caregivers, but it doesn’t matter how big or small it is, we all deserve the freedom to become who we were created to be.
This summer with Beau.
I have heard from so many people this year, that my story, my life, my blog has helped them. That my purpose on this earth to share my life’s story has changed their view of girls with Rett and others with disabilities. That makes my heart content, because I didn’t know when I started writing on my blog, that God would give me so many opportunities to make lives better. I know that everyday I wake up and do what I can that day, is a great day. I have had many hard days this year. I would guess that more than half of them have had great struggles. Even today, as I write this I am struggling with high energy and breatholding, but my heart is very content and that’s what I count on.
I know that if everyone were to be free to explore themselves and find a way to express it, this world would look different than it does today.
This year has been a miracle for me and I never want to forget how great it has been. I don’t even know where to start, but I will start with meeting Barbara McAfee a year ago. She is my friend who believed that my songs were beautiful and they could be created into a CD that would be something others would want to hear. She gave my heart joy because she listened and she introduced me to some amazing people who helped make my dream come true. I have a beautiful CD with the songs that have been given to me by God. My music therapist, Karen Bohnert, and I spent many hundreds of hours over 10 years getting the songs just right, so that what you hear and what I hear in my heart are the same. I feel so glad for that chance. Every person who was involved gave me a great gift. My CD Release Party helped me feel respected and cared about by my family and friends. I honestly never dreamed that my songs would be heard by others. That they would just be for me and my family, but God helped make that happen. My sister Leah’s viola and voice recording added even more. I love her so much and to this day when I hear my CD, my heart smiles.
Barbara McAfee, Karen Bohnert and I on our first meeting
In the studio on recording days with Leah, Mom, Gregg and Karen Bohnert
Gregory Thiesen played my music, Matthew owns the studio and Barbara
Matthew set up the microphone so Leah could read my poems
My Cd release party with Amy, Mom and Leah
jeff Dunn was my photographer and friend. Elizabeth and her mom were so excited for me.
I have had some requests to speak to audiences this year. The largest group was over 300 people. I felt so excited and scared that day, but I felt blessed the most. I couldn’t have given my message to a better group of people. They were so respectful and kind to me.
ARC MN Annual Meeting
I wrote my message and had my Mom read it. Amy came on the stage with us.
My music was played and our story told by Karen at an art exhibit opening
I was asked to share my story at a Women's Golf Tournament that raised money for ARC. My Mom read my message
I was interviewed by Maury Glover for our news on TV. Over 1000 people found my blog that day. He made my story so true and honest, but not full of pity, and I respect that.
Maury Glover came to our house for 3 hours
We went to Boutwells Landing so they could film me while I walked
I became the chapel speaker again for the camp in Iowa. I wrote messages for the four days of camp. Dave and Margie have believed in me and asked me to do something I didn’t think I could. But God knew better. They opened the door and asked me to share my thoughts with an audience at camp. This year was even better than last because my Mom and Gregg were included in sharing my messages. It was a powerful time for all of us.
The room at Special Touch Camp in Iowa where my messages were shared.
My great friends Emily and Ashley went to camp with us again this year.
I was contacted by a researcher in London, named Sandrine Geranto, who was so excited to hear of me because she is doing research on Rett Syndrome and pain. It seems that many people believe that girls with Rett Syndrome don’t feel pain the same as typical people. She read a lot of my blog and contacted me because she was excited to talk with someone who could communicate and had Rett Syndrome. We have been talking through email and she has developed a questionnaire for people who live in the UK to fill out related to pain. She has used a lot of my information to help create her questions. I am so excited because it helps me to know that I can help other girls who cannot yet communicate. I feel that it is one of the gifts that I can give others. I am still hopeful because my friend Elizabeth who also has Rett Syndrome has decided to help with these questions that Sandrine is creating because we are only a few of the women who can communicate. We don’t all have great courage to put our thoughts out where others can see them. My friend Elizabeth and I are loving to help and this gives us a chance to do that.
I was excited to see that our church was having a women’s study group. I have been going for a few months with my Mom. We are working on a huge study book. It has been a great experience even when I am struggling. This group of women have been very kind and encouraging to me. They respect my answers too and I feel like I belong there. One of the women in my group is part of a women’s group called Women of Today. They have many thousands of women who belong to it. They asked if they could have Rett Syndrome be one of their focuses this next year. My Mom contacted Ingrid Harding and Kelly Butler of Girlpower2cure, to see if they would like to be involved in providing information, support and they could maybe receive some money from this women’s group. It’s hard for me to understand it yet, but it sounds like a plan that might work!
Ingrid Harding came to my house last year. She has helped so many Rett families.
Barbara McAfee also nominated me for the Ann Bancroft Dream Maker Award again. I read her letter to the committee yesterday with my parents and it made us feel glad all over again for the great friends that I have and how included I am in this world. I don’t want to forget these things, and I feel very fortunate today. I hope you find your dream this year too.
Here is some information about the award: Ann Bancroft is one of the world’s preeminent polar explorers and an internationally recognized leader who is dedicated to inspiring women and girls around the world to unleash the power of their dreams.