When I last wrote, I had so much hope in my heart. I was expecting something life changing to take place. My Mom and Gregg and I were expecting to have our lives turned upside down. I share this because we believed it was going to happen. We were praying about it. We were trusting because the visits we had with the people making the decision and those who were advisors were very positive. Everyone who heard of this opportuntiy for our family said it was a perfect fit. We shared this with only a few because we didn’t want to spoil our life changing surprise by talking about it.

As I write this everything we believed and were so confident in, has not taken place. It has been so very sad for us. If you have ever fully expected something to happen, that you could see it and it didn’t take place, you will understand our grief. It was so close to being real that we felt it happening. I share this with you because the way I have had to handle this may be unique to those who are silent. I cannot process this through talking. I cannot walk or run on my own. I can’t even cry. When we got the news I was so stunned, I had the hardest seizure I have ever had. I don’t remember much about it, but my Mom and sister were with me. Since I have had to find a way to grieve, I have been silent here.

I am happy today because I have been asking God to take this pain and do something useful with it. He has been able to do that. I can’t explain how. I have been praying so hard because this loss has been too much to bear. If you could imagine not having a way to deal with your most heart wrenching pains in your life….well, you know what I mean.

There are good things happening too. The documentary being made of my life…Daniel Kinney is the filmaker. He is a beautiful person. He is so kind and gentle and has given me the title of director. He sees himself as my servant. I can’t tell you how excited I am to meet the young woman who auditioned to be my voice. She is a beautiful singer and gave me one of her cd’s. There were 7 who auditioned, and Jennifer was my favoirte for my voice. I have been working on my script for some time. My piano compositions will be a big part of the documentary…how I compose, and other things about my life. Daniel is encouraging me to write lyrics to one of my pieces.

We are working with Beau (my minature horse) trying to get him to identify objects from a group of three, having him put it in a bucket. He loves to mouth things, so we decided to have his mouth get a job. He has learned a lot of things and is very smart, so we are expecting this to happen soon.

I hope you are enjoying summer.

We love the amazing chimes my mom and I found at a garden store last week. I have never heard anything so beautiful. They sound like a cathederal. Mom let me choose my favorite one. They are huge and have a rich tone when the wind catches them just right. They make me so content. We wanted to take something that was so sad and make it into something beautiful. The chimes are making smiles on our hearts.



2 Responses so far »

  1. 1

    sumijoti said,


    I just found your blog and I must say I am so impressed! I am glad that you are trying to be positive despite your disappointment and pain, and I am praying that you will see “the goodness of the Lord in the land of the living”. (Psalm 27:13)

    It sounds like you have a wonderful family, and i love the fact that you are training your horse.

    I have a question: How do you compose music? Are you able to play the piano? Excuse me if this sounds very ignorant, but I have never heard of Rett’s Syndrome before.

    I would love to see your documentary when it airs. 🙂

    Much love,

  2. 2

    Sandy said,

    I am so sorry that life handed you such a huge disappointment! But in true “Karly Fashion” you have decided instead to look for the positive! You amaze me each and everytime. I wish I had your strength!
    I am so excited about your documentary! Your story and your music needs to be shared on a large scale – you have the gift of giving people inspiration!
    I bet working with Beau has been fun. He is such a smart little guy, there are probably no limits on what you can teach him – Let me know if he learns to do windows – I have a job for him! 🙂
    I too love wind chimes – there is no more soothing sound! May the chimes make your heart smile each and every day!
    Bless you and your wonderful family!
    Love Sandy

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