Archive for October, 2011

Seeing my Friend Susan Norwell

I was so happy to see Susan Norwell last week.  I heard from her about a new communication device that she thinks I should try.  I want to be able to have more freedom to communicate with everyone I meet.

Susan Norwell believes in me and others who struggle to communicate. She is my hero and I am so glad she came!

I am going to try the Tango to see if it will help me visit easier with people. And in my study group to respond in my own voice.

I would tell them many things if I could:

“I’m aware of your presence.”

“I hear everything you say, even when you whisper.”

“I see how you look at me.”

“You assume something about me that is not true.”

“I have a dream, do you want to know what it is?”

“You see a disabled person, I see a person who is afraid of what they could become.”

“You see a person holding their breath, I’m just trying to breath.”

“You see a person chewing on her bandana, and assume a lack of intelligence. I see that I’m helping my body calm down because it does things I can’t control. This helps me.”

I would like to help the world have more compassion.  It’s hard for those of us born with bodies that cause us so much trouble.  It’s not something we chose.  I feel compassion for those who get old and have limitations in their bodies that they cannot control.  My step-grandpa is here with us because he wants to live with family nearby and I have never really spent time with him because he lived so far away.  Now I am getting to see him as a frail, older man who has questions about who I am.  I feel glad that we can help him. But it’s hard to know that at one time, he was able to care for himself and taught many people in school and in his church, and now feels like his life is so much less because he cannot do that anymore.  I want to help him and others who see that their lives have changed so much.  I want them to know that while we are alive we have purpose and we have opportunities that only we can do. It’s not good to lose that understanding, because we all need each other!  We all need to have compassion and hope for a better world.  It starts with us giving our hearts a job to do: to see others and to see the little things we can do.

I hate it when I hear others think that the small kindnesses that we can show, don’t matter.   That unless it’s big and in front of a group, or is impressive to someone, that it doesn’t matter.  It’s not true!! It’s not true that our love and care for someone today, goes unnoticed.  I have seen how thoughtful acts, help open hearts of someone who’s locked up inside their body.  It’s important to help and hope and give.  And that’s sorely lacking sometimes.

I hope when you meet someone today, you see with your heart, that has compassion and sees how much you can do to bring light to someones heart.

Love, Karly

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A Very Personal Story!

After Jeff shared his message last Sunday at Woodland Hills Church

It has been a perfect week.  I have had so many great things happen to me.! Last Sunday Pastor Jeff Lexvold shared his message at our church that he titled, Lessons From Karly.  My feelings about it were: honored, overwhelmed, grateful, embarrassed and miraculous.  I didn’t want to be in the audience and noticed, so we sat on the side, but the people who talked with us were so kind and encouraged me by saying that my story changed their lives.  Jeff has been a great new friend.  He has told us that he will be sharing a message at Sonshine Festival that includes my story next July.

It’s amazing what has happened in my life!!  I never even hoped that my story and life would have this much impact on others.  I hoped that I could help other Rett girls and their families, but I never imagined that average people could be changed by my story and our families very personal challenges.  But I guess what has happened, is that God is able to use the most ordinary lives to help others.   There are 20,000 people or more at Sonshine Festival, so to imagine my story helping others feel more joy in their own lives, brings me such contentment.

I was on the Let's Go Fishing boat yesterday and invited my friend Claudia. It's been so great to have a boat I can go on the St Croix River with. I loved every minute!

It was a perfect day!

Many people go on these boats to enjoy the St Croix River.

I hope that you never give up!!  That you don’t wish for someone else’s life.  That you are honest about your own story, because I have found that God uses our struggles to bring light to others.  I sit here today struggling with breath holding and hyperventilation and I wish that would go away.  But in this I do not worry, because what I am experiencing is the same as thousands of others who live with this disorder and I feel connected to them.  I hope my story doesn’t seem impossible to you.  Because if I were to dream a dream that included some of the things that have happened in my life, it would be a fiction, but God made it into a non-fiction.  I love the verse “Delight yourself in the Lord, and He will give you the desires of your heart”.  I know that God turned my nightmare into a dream and for that I am so grateful!!

Here’s the message Jeff titled: Lessons From Karly

Love, Karly

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