I Love Our Piano

I remember sitting on my Mom’s lap while she played our piano.  The youngest I can remember is 9 months.  I was told she held me everyday she could play.  I sat in front of her until I was too big for her to play around me.   We took a few pictures but it usually happened when the only other person there was my sister Leah. She is a great piano player too.  I remember when I got older, about 3 years old I think, I could sometimes get my hands to reach for the keys.  I would drum them with my left hand just like I do to this day.  My Mom says it looks like I’m tickling the keys.  

4 years old

This memory came back to me this morning when I asked my Mom to play a song on the piano.  She doesn’t play often anymore like she used to.  She played a song I used to hear her play, “Love Can Build A Bridge…tween Your Heart and Mine.”  I love that title, because it’s what music has done for me.  It has given me a bridge.  Something that can cross over a huge barrier that was caused by Rett Syndrome.  I don’t have words, but I have some songs that have gone into the world through me.  I thank God for those songs.  They have given me a message to share with the world.  That message is: don’t assume that people who can’t speak, lack intelligence.  

I struggle daily to breathe, to feed myself, to do what others do without thinking about it.  I am fortunate because I can communicate, even with Rett Syndrome, but it is a hard life.  Today, I feel glad, because even though I’m struggling to breathe normal, I feel happy.  I am surrounded by flowers.  I have family and friends who believe in me.  I have hope that this world’s heart is changing towards girl’s with Rett Syndrome, because of those who believe and try to help us have a great life. 

I send my music into the world today.  I love this song.  I composed it and feel joy every time I hear it again.  My sister Leah is playing her viola for this song.

For Real Friends

In the studio. Gregory Thiesen played my songs and Leah played her viola. My music therapist, Karen Bohnert and Barbara McAfee have given me so much hope.

Love, Karly

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1 Response so far »

  1. 1

    Bethany said,

    Karly! Just got caught up on blogs…I am at my mom’s house for a quick trip, hanging out with my brother. Sounds like you are doing so well. This is wonderful news! I miss you!!!!!


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