Tuesday, March 4, 2008


I "met" another new Rett mom last night. I say "met" because it was over the phone. She lives in GA and I am in IN. Her sweet little girl Riley was just diagnosed with Rett Syndrome. I am so glad that the IRSF regional rep got her in touch with me. I remember when we got our diagnosis I just wanted to talk to other moms. I wanted to hear ALL about their girls....were they like Brooklyn?
I got Brooklyn in bed and then gave Erin a call. She is so sweet! She also has a 5 year old and a 1 year old (all girls) I got tired just thinking about what her days must be like! I hope I was able to help her. I am sure I gave her WAY too much information but I hope that what she got most out of our conversation was hope, encouragement, and understanding. Hope for the future with her amazing daughter; encouragement that she is a GREAT mom and she WILL get through this; and understanding of her feelings the way only another Rett mom can understand.
Erin ~ if you are reading this.....you are joining a crazy "Rett Syndrome World" but it is filled with love and laughter like you would never imagine! Stay strong and give Riley lots of love and hugs from her new "family" in Indiana! (Plus, I hope to meet you at the conference in Chicago in May!


kristin said...

Kelly, you are the perfect mom to talk to! You are so informed and positive and a wonderful asset to any RETT mom. Just wanted to let you know that I think you are truly AMAZING!! I love you!

carrie_akins80 said...

kelly, you are an great resource and an inspiration to all us moms that are new to the rett world!

georgiamom said...

Thank you so much for talking with me! You didn't scare me, I promise. I am signing up for the Chicago conference tonight so we will have to meet in person then!

Anonymous said...

You are a wonderful mother to Brooklyn and I am sure you helped Riley's mom with all the things you mentioned. Look how far you have come you really helped someone today.Thats really special. Love, janet