Archive for December, 2011

Pure Joy

December 29, 2011 · Filed under Disability Awareness, My Faith, piano compositions, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , , ,

This morning I watched God work out a miracle.  I will do my best to share some of it here.  I have talked about how amazing it is to have a voice that others can hear through my music, poetry and written words.  God worked it all together this morning into something so beautiful that it made grown men and women cry.  I wasn’t expecting my heart to feel so full of joy but it feels so full I could run around and sing!!  Since I can’t do that in my body I will try and do it with my words.  

With Steve Burk at Minnesota Teen Challenge. He was so respectful to me.

The director of Teen Challenge heard some of my story and words that were shared at our church a few weeks ago when a visiting pastor used some of my blog and story to share his message. Steve thought that my story and words would inspire the students at Teen Challenge and asked me if I could be a chapel speaker.  He gave me so much freedom to share whatever God gave to me.  He didn’t direct my words or even suggest much, so I was given a lot of freedom to listen and pray and share my story.  

I spent a few hours one day after I had prayed and wrote most of the message.  I added some more to it over the next couple of weeks.  I asked Gregg and Mom to help me make sure it was as clear as possible, but we didn’t change much of it.  Today Gregg started the talk with his inspiring words and prayer and after we played the song that I love by Matthew West called, “The Story of Your Life”, my TV interview was shown.  It’s a good way to introduce me because Maury Glover did a great job on my interview.  Then my Mom went on the stage and read my words into the microphone to about 300 people.  I sat in the front row with some dear friends who came to witness this wonderful event.  Amy and I chatted on my keyboard and I felt so close to God.  I watched how He changed hearts in that room.  

I heard the crying and the encouragement and the tears mixed with laughter.  I saw how God could use a silent young woman, unable to even care for herself, to change the hearts of people.  I give God an A for this message!!!!!  I thought it would be helpful to others, but the miracle for me was all the kindness and love and hope and encouragement that came to us afterward.  People who felt discouraged were encouraged to keep pushing and trying and believing and dreaming with God.  God knows who we are.  We are no surprise to Him.  Even our darkest thoughts are not hidden and we don’t have to worry that God would be surprised by us.  God has dreams for every person.  Those dreams are the truth, not what happens to us that causes us so much pain and disillusionment.  If I only listened to what has been thought about me because of the diagnosis of Rett Syndrome, I would not have dreamed for a bigger life.  But the one that God is working on for me is so much fuller and wiser and richer and more beautiful than anything my Mom or Gregg or I could have imagined.   The tears I heard and saw and the stories shared with us today came from the hearts of very hurt people.  Beautiful people.  People that I hope never forget the miracle that God has worked out for me by giving me a voice that others can hear through His songs and His words.  I hope I never forget how pleased I am in the this moment to be alive and working together with God to be His helper.  I feel so blessed beyond words.

My Mom, Gregg, Amy, Liz and Darren at MTC.

Love, Karly

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A Very Peaceful Christmas

December 24, 2011 · Filed under Music & Art, My Faith, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

It's a beautiful time here in Minnesota

It’s a very peaceful Christmas for our family.  I feel very eager to share this with others.  I have not been writing on my blog because I have spent my time preparing for my chapel talk next week.  I have been given 45 minutes to share whatever I am ready to share.  I am going to share two of my songs and a couple poems, but mostly I want to leave them with hope.  

I feel so much joy because my life has a purpose.  I know that everyone has a purpose but many never find theirs.  Part of my message is to be honest about my struggles.  People often see only the good parts of our lives and not the real challenges.  However for me, I can’t hide the real parts.  They are visible to everyone.  If it’s possible for me to feel a purpose, it’s possible for everyone.  I don’t have an easy life, but I have a great life.  

I never will know why people who have so few challenges live only for themselves.  I have so much joy in helping others.  I wish you peace and hope today.

Leah was home last week. She was sick while she was home, but we had a great time together. There was lots of piano music.

Love, Karly

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Until We Meet Again/Saying Goodbye to Grandpa

December 2, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

Grandpa loved the beautiful Fall colors

It has been an amazing time for our family.  My step-grandpa moved to Minnesota in October.  He was not well.  He had many health problems and even though he wished to be strong, his body gave out.  I spent time with him in his apartment.  Occasionally we would talk.  We didn’t know each other well.  I had met him one other time in my life.  He lived in Ohio about 13 hours away, too far for someone like me to travel.

This is the first time we met last year.

He gave me a gift at the end of his life.  He was in the hospital and I knew we needed to go, so I encouraged my Mom to take me to the ICU where he was in his bed.  I told him we came to pray with him.  He opened his eyes and turned his head so I could see his smile.  It was the first time I saw real peace on his face.  He held my hand.  It was not hard for me to be there.  I don’t fear death.  I don’t fear pain because I’ve had so much of it, that I fear living for a long time.  I told him that I can’t wait to go to heaven.  Many people do not want to hear that from a young person.  They think it’s wrong to want to leave this life.  But the truth is, many of us who have lived very hard lives have seen the spiritual side of life in ways that others can’t.  I have never had this much peace.  I feel like Grandpa was loved to his last breath.

So whenever I could be there, he turned and looked at me and even had tears because he knew that I was so happy for him, that dying is not the end.  It’s a beautiful beginning.  One of our friends says that death is “The Messenger of Joy”.  I know that’s true.  It’s strange how people get afraid of death.  Like it’s the very last thing they want to happen.  I don’t feel like that.  I don’t wish to be dead before my time but I can say for sure that I will be so very happy to leave.  I will have freedom on the other side that I don’t have here.  I wrote a poem for Grandpa and I will have Mom read it at his service.  It’s a beautiful time.

Love, Karly

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