This past week my friend Elizabeth came to visit me and we did something really fun together. I love to see her and we always enjoy talking together. She is going to be 30 this summer and she also has Rett Syndrome. She types with a keyboard too. It’s like having a friend who knows everything about you. That’s what we feel about each other. There is a group of people who give boat rides and fishing opportunities to the elderly and people with disabilities and they have a pontoon in the river near our home. Elizabeth fished too. We finished with a picnic. It makes me so happy to be around another woman with Rett Syndrome who is able to communicate with me. Sometimes we can do it easily and other times we really struggle to type, but this week we just had fun together.
I wanted to share this because I know many of us with Rett Syndrome suffer and struggle. It’s not a life we would have chosen. But to know that there are others who understand us brings peace to my heart. We went to church last night and I felt like there was something very important that happened. Our pastor was sharing a very sad memory from his childhood and how that memory and those experiences still affect him today. It was sad. It was real. He was talking about what he does with God to help heal some very painful experiences in his life. It made me see how God has helped me accept a life that no one would choose. It’s a life full of challenges that most would not imagine; with dependence on others who rarely stay in your life as a friend, who can leave because it’s best for them. Who have goals and dreams that you don’t fit into. A life filled with physical pain and suffering at times. A life that requires so much patience. A life that is lonely.
But I sit here with a smile on my face and great joy in my heart because my eyes can see how much better off I am than I would be if I never had this disability. I don’t feel like I have an impossible life. I have seen things that many others can’t. I have experienced joy that is not from this world. I see God working in people in ways they can’t understand. I don’t worry about Rett Syndrome. It hasn’t stopped me from being loved by God. God has given me so much peace to endure this life. I know that even if I have no abilities in my lifetime that others have, that my life mattered while I was here. Because God showed me that even if I struggle, He can use my life and my story to open people’s minds and their hearts to girls with Rett Syndrome. We are not the limited people we appear to be. Our hearts are held by God and that is the part of us that really matters.
So even if everything else seems to be wrong with our physical bodies, I am confident of all the girls I have met with Rett Syndrome, that our hearts are open to God. I have so much joy because my hope isn’t in a cure. My hope is not in a life that is easy. My hope is in my heart. It is from God. So to me, Rett Syndrome is God’s gift because He made it become a blessing. I believe that with all my heart today. I feel so glad for my Mom and Gregg who live with me everyday and go through many hard things with me. They believe in me always.
I send you great joy and hope.