Archive for September, 2011

Great Hope

Something amazing happened to me and my family last weekend.  I was so surprised when I got a response on my blog from a pastor I have never met, but who knew quite a bit about me!  He saw my story when it was aired on TV last Spring and he has some of my music on his Ipod.  He’s going to be preaching this weekend at our church and asked if he could use some of my blog for his sermon illustration.  He was so enthusiastic because something amazing happened for him and he felt like God lead him to me. This is what Jeff Lexvold shared with us when he came to meet me and my family on Saturday.

This is the Bible verse for his message:

I Thessalonians 5:16- 17 “Be joyful always: pray continually: give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”  Jeff listens to piano music while he is praying. He has many other pianists on his Ipod and a few of my songs! He asked God to bring someone to his mind that lives with great challenges and yet finds joy in living because of their faith and hope in God.  He was driving down the road asking for God’s help when one of my songs came on his Ipod, and he felt so strongly that my story was the inspiration he needed for his sermon.  He leads youth mission trips and uses my TV interview to teach compassion and understanding for his trips into areas where the students will meet many people who are not like them.  He uses my story to demonstrate that people are more than what they appear to be.  I was so grateful that God lead him to me because I had never even heard of Jeff before, and he has been so inspired by my blog.  It gives me courage to continue sharing. I listened to what he was planning on sharing and I told him I was pleased with his message.

It is hard for to be visible because of my greatest challenges in life.  Most people who live without a disorder that others can see, rarely experience what those of us with physical and visible disabilities live with daily.  We are noticed for what we cannot do. Not for our great accomplishments, not for our compassionate hearts, or for the beautiful smile on our faces.  Part of Rett Syndrome even affects our ability to demonstrate how we are feeling because Apraxia sometimes even blocks my ability to smile when I am happy!  It takes a beautiful person to recognize there is so much more than what we can see on the outside of a person. I feel so much gratitude today because Jeff took a risk and asked for my permission to share the hard parts of my life.

He shared something else with us that seemed so enormous that only God could have made it happen.  I don’t want to say anything yet about the details but I wanted to say that Jeff bought two of my CD’s and one of them is going to the band that many people know about, called the Newsboys!  Jeff is the coordinator of Sonshine Festival, a very large event that happens every summer in our state for people who love Christian music.  God is so loving and I feel it today especially.  I wanted to share this now because I have been so grateful this week.

I know what it is to struggle so much in this life.  But I also know God’s love and direction in my life and I know it’s real.

Us with Maury Glover during our TV Interview

Maury Glover the day he interviewed us for 4 hours.

Tim was our cameraman

I have had opportunities in my life that many can hardly imagine. Opportunities, that for a young woman with Rett Syndrome can only be by God’s planning. Most people hear the word Rett Syndrome and their minds close and their eyes look with pity, because they assume I have so little to offer.  I have been a keynote speaker at conferences and annual meetings, at schools and a chapel speaker at week long camps. My music has been recorded in a professional studio.  I have people seeking my guidance for many challenges related to Rett Syndrome.  I am a writer, a poet and I have been on TV many times.  I don’t say any of this to brag.  I feel so fortunate!  I read these words and feel like I am part of a miracle!!  We have not tried to create a life for me that is visible in our community, but it has happened!  My Mom and Gregg have not made me visible.  My words have made me visible.  My story has given people insights into Rett Syndrome and only I can tell that story.  My parents have their own story to tell, but I am the only one who can offer what it is like to be me.  My Mom has done so little to make any of these things happen!  What I mean by that, is these things have been offered to us.  People call us for interviews and speaking engagements and research projects.  We haven’t done any of it.  It’s what God has given me to do with my life, and I say YES when I know it’s right.  My family always has me make the decision about whether I feel it is the right thing to do.

Today I feel so much gratitude.  I sit here in the hospital with Mom trying to get my new wheelchair ready for me.  We started getting my new chair in May of 2010.  Today is the first time I sat in it!!  It will be a while before it is done.  We have been here in the hospital since 8:30 this morning and hope to leave by 3.  It is one of hundreds of appointments we spend our time doing, but I can say this, I have said so many prayers during the times we have waited and driven somewhere.  I try to pray for everyone I meet.  I feel it’s the best thing I can offer.  I send up prayers today for my Rett friends who need so much support in order to live.

Love, Karly

Comments (2) »


On the river this week.

Its hard to imagine a day being more beautiful than it is here at home.  It’s sunny and warm and the birds are singing. The flowers are perfect.

It’s not overlooked by most of us, that this day has a history that is painful.  It’s everywhere we look.  Whenever we turn on the tv or listen to the radio it is being discussed and talked about, over and over.  I feel really sad for those who were harmed and have very painful memories.   I asked God for healing for many people because it’s hard to have that hurt inside of us.

I have something in my heart today that I wanted to share with others.  I need to start by saying that people who intentionally hurt others have problems I can’t even imagine because it is ignorant to think that it won’t come back to harm us if we hurt someone else.  I have been thinking much of peace lately.  I am so glad for the days when I feel peace inside of my body.  The peace I can talk about the best is my own.

I’ve had many hard days lately. If I could jump out of my skin and run away, I would never come back to it. I have felt much frustration and sadness over the trouble that Rett Syndrome has caused me.  There are times when I feel that I have a great life in spite of it, and other times, I can’t stand what it has done to me and my family.  I have so many limitations and getting my needs met is getting harder on my caregivers.  That is very hard on me too, because I know what I want to be able to do, and yet I can’t do it.

I have so much trouble trying to just live, but in my heart I have so many things I want to experience in my life.  I don’t know if a cure will come.  It would be a miracle if no other children were born with this disorder.  I haven’t met anyone with Rett Syndrome who has it easy, but I can say this, there is so much hope in my heart today. I know that if I struggle everyday I am not alone.  I have family who have loved me so well. It’s great to be at home with them.  It’s not hard going to bed feeling content everyday, even if it’s been a hard day, because they tell me they love me in so many ways.  I am fortunate and I feel peace because I know there is more than I can see in this world.  I am not going to suffer forever and I feel glad for that.

I have found joy in my heart. I’m not afraid, if I live for a long time or if I die soon.  I am living a life I hope helps others and brings peace to other girls with Rett Syndrome. Their families have concerns that most can’t even imagine.

Peace and hope come even if life is really hard.

Love, Karly

I got to ride Chester early yesterday morning with great friends helping me.

Comments (5) »

My St Croix River

I sat next to this pot as I write this morning

I want to start by saying it’s been so long since I have felt good that having a great morning feels like heaven!! I was so worn out and so restless with my breathing that I haven’t felt up to writing, but now that I’m better today, I feel like I could write all day!!!!  It’s so perfect outside on our deck today.

I was so glad for yesterday.  I asked my grandparents if they would like to go out on the boat with me and they said yes.  It was surprising because I haven’t been able to do much with them for many years.  They have never been on a pontoon so it was a great experience to be on the St Croix River together. My grandma was in the nursing home for a while because she was having seizures. She was anxious to do this with me and had fun.

My grandma's first time on the river

This poem came to me yesterday when I was on  the river. I dedicated this poem to “Let’s Go Fishing”.  It’s a wonderful group that takes people who are elderly or have a disability out in a boat.  They have been so lovely to be around.  This is my thanks to them.

 My St Croix River


It soothes and softens the hardness of life

lulling the trying images that run through our lives

into a resting place


It gives peace in place of unrest

giving joy to its passengers floating ever so safely on its surface

encouraging boldness where there was fear,

noting a lifetime of caution


It’s the perfect prescription.

no side effects noted, no complications observed

no bad habits formed

only moments that are perfect in its comforting presence


Thank you for being my new friend,

hearing my pleas for comfort and restored strength

understanding my need before I was aware of it


Sept 9th 2011

This swing bridge is in the river.



Leave a comment »

Mulberry Poets

I wrote a poem last week that I shared with my poetry group yesterday.  They are so encouraging to me. I love being in that group because they treat me like one of them.  I am not pitied, but I feel respected and perfectly normal.  I haven’t had many experiences like that in my life, because I am often looked on as someone who needs lots of help. Not very often as someone part of a normal group of people.

Imagine This-A Place Called Love

 In Quiet Moments I imagine a world where kindness is typical 

Where thoughtful conversations guide decisions

where people who live in shadows come into the light and are beautiful

In quiet moments I hear the children, loved and noticed

putting their touch on their world

playing children’s games, unaware of darkness

Imagine if the children who could see no dark, 

had friends who lived in the shadows…

September 4th, 2011

Comments (1) »