Sharing My Once In a Lifetime Friend

September 28, 2018

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“The Best kind of people are the ones that come into your life, and make you see the sun where you once saw clouds. The people that believe in you so much, you start to believe in you too. The people that love you simply for being you. The Once in a Lifetime kind of people.” -Unknown 

Whenever I come across the words Rett Syndrome the first thing that always comes to mind is my friend Kimberlee Payton. Interestingly though whenever I think of Kimmy (which is daily) I seldom think about Rett Syndrome. I’ve decided it’s because our friendship was built from the defining qualities Kim possessed not the symptoms that Rett imposed upon her body.  Of course, although Rett Syndrome was not who Kim was, it was a part of her and her story nonetheless. In fact, it was that diagnosis and her need of a home health nurse that first brought us together. Often times you’ll read or hear about the things Rett robs these girls and boys of. The symptoms & struggles, the heartache and frustration. All of those are REAL and difficult and unfair and I believe it’s important to share those things. But instead today I’ll share how Kim’s friendship and gifts have influenced my life for the better because that is what I think of when I think of her.  I spent approximately 13years as Kim’s home health nurse. The very first time I met Kim and she looked at me with her big expressive blue eyes we connected in a way I’d never experienced before. One of Kim’s gifts was that she had a way of seeing the real you, no matter what pretense you might be putting on. This was not only refreshing but it was a gift to me. You see, at the time I met Kim I was just emerging from one of the most difficult times of my life. I was recovering from PTSD including severe anxiety & depression, low self-esteem, and even mild agoraphobia. Without knowing the details, Kim saw my struggles despite my attempts to hide them. She accepted me for who I am and more than that she helped me see the good and positive things about myself. At least once a day she would look directly in my eyes and “tell” me my worth. And eventually I started to believe her. Being around her upbeat energy and her optimistic outlook began to rub off on me; giving me a fresh perspective. The tie that immediately bound us together was our mutual love of music. I sang a LOT when we were together and we had daily dance parties. We clearly both used music to cope with the things life had thrown at us. But looking back now, it’s astonishing to realize how much music became a means of communication between us. A way of supporting one another thru the difficulties and celebrating when things were full of joy and hope. Because of music Kim was not only able to get her body to accomplish things that would have otherwise seemed impossible but it also allowed her to communicate more fully; who she was and how she was feeling.  One of the other incredibly valuable things Kim taught me was that it’s ok to be discerning about the people and places I put my energy. I noticed she knew who believed in her and what personalities she worked best with. She intentionally surrounded herself with those she knew would help her be at her best. She wasn’t unkind but she was unapologetic about it. Again, I began to follow her lead and invest my time with those who were supportive and accepting of who I am. Something that inspired me most was the way Kim loved. She loved big, and honestly. Kim was not shy about showing how she felt about those she loved. She showed me that in order to receive the love of others I had to let them in and be vulnerable first. That it was worth the effort and risk. I know I am one of many who have been forever changed by the completeness of her love.  By now you may have realized that this is written in past tense. However, even though it’s true that Kim is no longer here; her legacy and lessons of love, hope and positivity still remain. There are so many other things Kim has taught me and ways she’s changed my life. She’s inspired me to offer my personal support to other Rett families, help fundraise and be a part of the Girl Power 2 Cure organization and of course our Swingin’ 4 Rett event is held each year in her memory. ! I will continue sharing her story & her song with anyone who will listen. I will look for those who are sincere and tell those I love of their worth, I will keep fighting and striving to be the person Kim believed me to be. I will keep singing and dancing and sharing my once in a lifetime friend. And in those moments of helping others it’s as if I can hear her singing right along with me.


Check out this AMAZING Video - Kimmy's Voice:


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I worked with GP2C while running the #Ragnar4Rett with the other ladies from #TeamSparkle. They are AWESOMESAUCE! The money that goes towards Rett Research is extremely valuable and I am honored to have been a part of something so much bigger than myself!

— Carlee McDot