Archive for May, 2011

Hope For The Future

May 28, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

I have not felt like writing this week because I’ve had some seizures, but I feel good right now so I have something important to share.  

Kelly Butler and Ingrid Harding came to our house. I stayed awake as long as I could.

I had a great thing happen last week.    I had two visitors come to my house.  One of them I had never met before.  I felt so honored because these two women are mother’s who have daughters with Rett Syndrome.  They heard about me a while ago because of my blog and they have felt so encouraged by my words.  They believe in girls with Rett Syndrome.  They assume the best about us.  They understand something very important.  They understand that Rett Syndrome is very difficult to live with but they also know that we have not lost our intellect along with all of our physical limitations.  They feel so encouraged by the research that is being done to help cure Rett Syndrome that Ingrid (Harding) started girlpower2cure  so they could help raise money for Rett research.  That is exciting! But the most exciting thing to me is how much they try and help us right now, even before there is a cure.  They are always wanting to find new things that help our quality of life.  They inform families and teachers and therapists and caregivers and doctors.  

I felt so happy that I got to meet Kelly Butler when they came to Minnesota last week. I got to meet Ingrid a couple of years ago.  We hope to help them raise some money as well as awareness in Minnesota.  There are so many girls with this disorder who are not diagnosed yet.  They assume we have something else.  I wanted to share this on my blog because I have lived with Rett Syndrome as long as I can remember and even though I can’t imagine life without it I feel so honored to help people understand some of my experiences living in this body.  Ingrid Harding and Kelly Butler are my friends and my heros and I feel so glad they came to see us here in my home.  

I am praying that there will be a cure for Rett girls and I hope that it gives us a chance to live free of struggles.   I am praying for strength for the girls I know who are suffering greatly in their bodies and need a break.  I hope they don’t have to die before they are free from their suffering.  Rett Syndrome causes so much pain and so much of our effort is spent to do almost anything.  I send my love and peace and hope into the world, and ask that God sends it to the girls and their families who need it most tonight.  

Love, Karly

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Saying Good-bye to CBS Friends

May 12, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged ,

My Mom took this picture of the sunset after I was in bed this week.

I was looking for a Women’s Group last Fall, when my Mom and I saw the Community Bible Study group for women was being held at our church.  It sounded interesting so we signed up.  It was very interesting to me because I have never been in a study before with a workbook.  It took about five hours each week to complete it because there was a lot of questions and reading each week.  I wasn’t able to go many weeks because I wasn’t strong enough and my health was bad.  

When I was in school I was never in a classroom that gave me work that required study and reading and answering questions.  My school was about tasks, so this was a good experience for me to realize what that was like. It was the book of Acts in the Bible that we studied for 30 weeks.  It was interesting to me because I have never studied the Bible like that.  I have heard the Bible all my life but I haven’t answered questions so it took a lot of my Mom’s time to help me with this study.  

Yesterday was our last time together and I have had two weeks of lots of breath holding and hyperventilating. I hate them!  I hate being noticed because I am turning blue, but I had known in my heart that I wanted  to let everyone know how much I valued my time with them.  The entire group was very large, about 150 people.  My small group was about 12 women.  I wrote a message and my Mom and I went up to the microphone and shared it with everyone who was there.  I know many of them saw me for the first time.  Really saw me.  If I was in the room with the large group I was not seen as someone who was intelligent, so it brought great joy to my heart to share this message.  There were tears, clapping and a standing ovation.  I am glad for that, but mostly I am glad for them because their eyes and ears and hearts were opened just a little bit more yesterday, because they saw.  I feel glad for that and I feel blessed. 

Here’s part of my message to them:

It was a hard thing for me to decide to come to a formal Bible Study.  I often feel anxious in a formal setting because my disorder causes my body to act in ways that might distract others. When I can’t control it, I get stressed.  

 I don’t know if this is a group that I will continue with next year, but I wanted all of you to know something.  I have learned a lot about Paul.  His courage, his boldness, and willingness to suffer much pain.  His righteous anger at times, his ability to teach about things that changed people’s lives, in a culture that didn’t value change.  I learned about how much a willing heart can be used by God.  I find my heart is more open to learning if I can see how it can not only change my life, but the lives of others around me, when I ask God how I can use my new understanding. 

 I have many times felt overwhelmed by the limitations that my disorder has caused me and my family.  But I am so glad that even when our lives make no sense to others, God can use us in mighty ways, just like He did with Paul.  I think the thing I’m most glad about from this study, is that God knows who we are. And the things that may look like problems to others in our bodies, our minds and our spirits are known of God, and He can use them for His glory.  Paul didn’t seem like a likely candidate for a Christian at the beginning of this study, but by the end we can see how God used his personality and his heart to change the world in ways that others couldn’t.  I want to be bold like Paul and not live a life that I will have to apologize for. 

Karly

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Poem For The World

May 2, 2011 · Filed under Companion Horse, Disability Awareness, My Faith, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

This always makes us smile.

I have become interested again in writing poetry because I am part of a poetry group of adults who are not disabled.  We are called Mulberry Poets. I have felt welcomed and valued there and I feel so glad for that.  I know how hard it is for people who have disabilities to be noticed for who they are and not what they have.  For today, I want to send some hope into our world and I think this poem was inspired for that reason.

To Change the World

 It doesn’t take much talent to bring joy

It doesn’t take much joy to change hearts

It doesn’t take much effort to change someones day

It doesn’t take, but gives

to offer a smile

a hand

a kind word

to notice someone who needs a hug

It doesn’t take much to hear the birds song

the flower blooming

the children laughing.

 It doesn’t take much to pet a dog

to offer a cup of tea

to listen to someone’s story

It doesn’t take much to change someone’s day

It only takes our willing hearts and awareness to respond

 Look, see, hear, feel

It’s all we have to do in this moment,

and the next

and the next…..

Karly

May 2, 2011

I feel content with Beau

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