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.
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.