Karly Elizabeth Wahlin passed away peacefully at home on August 20, 2012. Her last poem -- written when she knew she was near the end of her life -- is at the end of this note. She was a blessing to all who knew her.
From the artist:
I have lived for 24 years with a rare and often misunderstood disorder called Rett Syndrome. For most of us living with this disorder there is little chance to share who we are. Most of us cannot speak to share what we are thinking, let alone demonstrate that we have intellect. Our bodies are often very difficult to live in because of the effects of our disorder. But I don’t want you focus on what we cannot do; I want you believe in us for who we are as people. I am able to communicate, unlike many of my friends all over the world with Rett Syndrome who are not able to freely express their needs and dreams. Because of this I am able to tell you that there is far more intelligence in each one of us than you can see. We are eager for you to see our gifts and talents and to give us opportunities to express who we are.
Soon after I was born, my Mom played piano everyday. She would hold me on her lap in front of the keyboard and play. I loved how it sounded and tried for many years to reach my hand towards the keys. It was so frustrating for me because my hands weren’t able to play. I have been surrounded by a family of wonderful musicians. My father is a singer and my sister, Leah, is a violist. It offered me comfort and strength to be surrounded by such beauty.
I was fifteen years old when my music therapist, Karen Bohnert, was inspired to see if I had songs inside of me that needed to be shared. She found a way for me to communicate my songs so she could write them down. It is because of her persistence and hundreds of hours of work together that these songs have come to your hearing. I am so glad for her belief in me and my talents, despite the many hours we worked without much accomplishment. She gave me a voice that others can hear because she felt that my songs were meant to be heard. Having my music performed by someone whose hands are able to play the correct notes has changed my voice in this world.
I hope that when you listen to my music you believe in girls with Rett Syndrome and their hidden gifts and talents. We are waiting to be seen and heard, to have our own unique voices in this world. For my friends who have very high physical needs but are without an audible voice, I gift this music to you. Though we live our days on earth in silence, I want you to know that I believe each person has great value. With the right people to surround us, our lives will be seen as the light that they are in this dark world. These songs, given to me by God, have changed my life. Thanks for hearing what I have to say through my music.
As Karly’s health declined, she asked me to post this poem she wrote, after she passed. Her beautiful heart and spirit continued to guide us right to the end of her days. She leaves behind an enormous hole in our hearts and lives.
Lois Swope-Karly’s Mom
The music of heaven fills my heart with longings I cannot ignore
The time spent on earth full of its possibilities,
becomes a distant memory
compared to what I see through weary eyes
I leave my love behind to offer as a beacon
for those who wonder if it’s true,
I have seen, I have heard, I am certain
It’s a small step for me now on this path
I hear the tears of many who have loved me so well.
Love another like you loved me,
and this world will be a better place.
I see the face of God
I see my new beginning and I am full of joy
I will watch for you, please come.