I felt like it was impossible for me to feel great again, last week. I was so unhappy that I thought it would be this way now. No matter what I said to myself I couldn’t feel hopeful inside. I was very afraid and it caused all kinds of trouble in my body with Rett Syndrome. I prayed, I talked with my Mom and Amy, I walked, I watched relaxing videos, I listened to soothing music, I went outside as much as possible, we went for long, relaxing drives, I listened to books on CD, I listened to sermons from church and nothing stopped how my brain was thinking. I felt so crazy!
I decided to share this today because I’m almost done now with the seizure medication that caused all of this to happen to me, and I feel great today! I never want to feel like that again. I would rather have a seizure than feel crazy. I don’t know if other people feel that way on their medication, but if any of my Rett friends do, I feel so sorry for them. I have never felt well on the medications that are suppose to stop seizures, but this was the worst. I think if I had to do it again, I would say No. My Mom had me decide if I wanted to try the medication and didn’t start it until I said, yes, it was time. I feel glad for that, but I feel really glad to be done. We are seeing my Dr next week to see if she has any other ideas. She wanted me to start anti-anxiety medication to stop how crazy I felt, but that made it worse.
I’m eager to say something: In my life I have had many hard days with Rett Syndrome. I have had days when I couldn’t stand to be in my body anymore, and I get discouraged. I pray a lot for those days so I don’t feel so alone in my struggle. I haven’t always felt joy in my life. There have been many days that I can’t imagine a harder life than the one I have lived for 26 years. But then days like today come and I see how beautiful life is and I see that I have not been alone, that God has given me a great gift. How He has used the hardest times in my life to give me understanding, courage and gratitude. I know that God doesn’t like Rett Syndrome. And I believe with all my heart that He didn’t create it. That it’s something that happens to humans for some reason we don’t yet understand. I believe that God has given me the ability to communicate my experiences for a reason, and today I am sharing some of those. Only God can make sense of Rett Syndrome. I’ve been surrounded by great, loving people. My Mom and I have been through some very painful days together. They have been hard on her. But today, our lives are better and our spirits are happy. We have many friends to thank for that. People who have entered our lives recently and people who have been here with us through much over the years.
I wanted to share one of my favorite songs that I composed when I was 16. This is one from my CD, In My Own Voice. It’s title is: For Real Friends.
I hope you enjoy it.