Getting Hope

I have had an interesting month.  I wanted to take a break from writing because I was feeling eager to be outdoors.  It’s been so beautiful here and I have enjoyed the flowers on our patio and deck.  I’m writing this while standing in my stander on our patio. 

I had an event this month for my music.  It was an art gallery reception.  The people were very kind and interested in my music.  It was fun to meet the mayor of Minneapolis.  She was so thoughtful and wanted to help my music be heard by more people.

Gregg visited with Sharon Sayles Belton, who was the mayor of Minneapolis.

My music therapist, Karen, shared with the people how we compose my music.

 It’s been quiet lately.  I have not sold a lot of CD’s.  I wanted to get them to Rett girls and their families.  It was one of my dreams and wishes when we started making my CD.  It was stopped by the Rett people who run organizations who are suppose to help girls and their families who have Rett.  It seems that they don’t believe that someone with Rett Syndrome could compose music.  I am so sad about that because they say that their wish is for more opportunities for Rett girls.  A cure for Rett Syndrome is their biggest goal, but it seems that they are afraid of giving false hope to Rett families. (That’s their words, not mine) It’s so amazing to me. I am not any more intelligent than I have been allowed to be.  I was surrounded by family and friends and others who believed in my intellect and saw Rett syndrome as a physical challenge.  I am so sad for the many girls who don’t have that.  I am positive that they are being limited, not by Rett Syndrome alone, but by the belief of others.  Can you imagine living like that? I wish I could contact every Rett girl and give her my CD.  If they heard it they would know that it’s from me. It’s not something my music therapist made up.

I wish to send hope and a positive future to all of them. But until the group that says they are trying to help us, realizes that they need to give us the best opportunities while we wait for them to find what they say is a cure for Rett Syndrome, it is limiting and cruel to assume that I and other girls with Rett are lacking intellect. I felt like I wanted to say this to my friends on my blog.  I hope you continue reading my story. I have many wishes and hopes for Rett girls and their families.  I know there are many challenges in our lives.  I have a lot of them myself, but I don’t live like I am incapable.  I try to live the best I can everyday.  I struggle like all girls with Rett Syndrome do.  I send you a big hug today.

Love, Karly




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