Something amazing happened to me and my family last weekend. I was so surprised when I got a response on my blog from a pastor I have never met, but who knew quite a bit about me! He saw my story when it was aired on TV last Spring and he has some of my music on his Ipod. He’s going to be preaching this weekend at our church and asked if he could use some of my blog for his sermon illustration. He was so enthusiastic because something amazing happened for him and he felt like God lead him to me. This is what Jeff Lexvold shared with us when he came to meet me and my family on Saturday.
This is the Bible verse for his message:
I Thessalonians 5:16- 17 “Be joyful always: pray continually: give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” Jeff listens to piano music while he is praying. He has many other pianists on his Ipod and a few of my songs! He asked God to bring someone to his mind that lives with great challenges and yet finds joy in living because of their faith and hope in God. He was driving down the road asking for God’s help when one of my songs came on his Ipod, and he felt so strongly that my story was the inspiration he needed for his sermon. He leads youth mission trips and uses my TV interview to teach compassion and understanding for his trips into areas where the students will meet many people who are not like them. He uses my story to demonstrate that people are more than what they appear to be. I was so grateful that God lead him to me because I had never even heard of Jeff before, and he has been so inspired by my blog. It gives me courage to continue sharing. I listened to what he was planning on sharing and I told him I was pleased with his message.
It is hard for to be visible because of my greatest challenges in life. Most people who live without a disorder that others can see, rarely experience what those of us with physical and visible disabilities live with daily. We are noticed for what we cannot do. Not for our great accomplishments, not for our compassionate hearts, or for the beautiful smile on our faces. Part of Rett Syndrome even affects our ability to demonstrate how we are feeling because Apraxia sometimes even blocks my ability to smile when I am happy! It takes a beautiful person to recognize there is so much more than what we can see on the outside of a person. I feel so much gratitude today because Jeff took a risk and asked for my permission to share the hard parts of my life.
He shared something else with us that seemed so enormous that only God could have made it happen. I don’t want to say anything yet about the details but I wanted to say that Jeff bought two of my CD’s and one of them is going to the band that many people know about, called the Newsboys! Jeff is the coordinator of Sonshine Festival, a very large event that happens every summer in our state for people who love Christian music. God is so loving and I feel it today especially. I wanted to share this now because I have been so grateful this week.
I know what it is to struggle so much in this life. But I also know God’s love and direction in my life and I know it’s real.
I have had opportunities in my life that many can hardly imagine. Opportunities, that for a young woman with Rett Syndrome can only be by God’s planning. Most people hear the word Rett Syndrome and their minds close and their eyes look with pity, because they assume I have so little to offer. I have been a keynote speaker at conferences and annual meetings, at schools and a chapel speaker at week long camps. My music has been recorded in a professional studio. I have people seeking my guidance for many challenges related to Rett Syndrome. I am a writer, a poet and I have been on TV many times. I don’t say any of this to brag. I feel so fortunate! I read these words and feel like I am part of a miracle!! We have not tried to create a life for me that is visible in our community, but it has happened! My Mom and Gregg have not made me visible. My words have made me visible. My story has given people insights into Rett Syndrome and only I can tell that story. My parents have their own story to tell, but I am the only one who can offer what it is like to be me. My Mom has done so little to make any of these things happen! What I mean by that, is these things have been offered to us. People call us for interviews and speaking engagements and research projects. We haven’t done any of it. It’s what God has given me to do with my life, and I say YES when I know it’s right. My family always has me make the decision about whether I feel it is the right thing to do.
Today I feel so much gratitude. I sit here in the hospital with Mom trying to get my new wheelchair ready for me. We started getting my new chair in May of 2010. Today is the first time I sat in it!! It will be a while before it is done. We have been here in the hospital since 8:30 this morning and hope to leave by 3. It is one of hundreds of appointments we spend our time doing, but I can say this, I have said so many prayers during the times we have waited and driven somewhere. I try to pray for everyone I meet. I feel it’s the best thing I can offer. I send up prayers today for my Rett friends who need so much support in order to live.