July 11, 2009
· Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Writing Memoirs · Tagged Special Touch Camp
I got home with my Mom and Gregg last night from camp. I have been trying to find the words to share with you about what it was like for me there. It is impossible to express how much joy I feel to be honored in that way. There was so much respect and kindness and love from everyone I met there. My health was great, I felt good and I slept well while we were gone.
For those who have a life that is noticed by others for their wit and charm and intelligence, it may be difficult to understand just how amazing my experience this week has been. I am not noticed for any of those things to the average person. My movements, breatholding and chewing bring attention to my disability instead of my heart. I have never had four speaking times together in four days. Dave and Margie, the camp directors believed in me. They gave me so much respect. God was evident to everyone there.
I need to give you a word picture to help you understand what it’s like for me. These are some words that express my gratitude to God and all the people who were involved in making it possible for me to present my message.
Love
peace
respect
sacrifice
gentleness
gratitude
joy
honor
beauty
health
tears
more tears
tears of joy
open hearts
willing spirit
tender moments
freedom
thoughtfulness
laundry angels
sweet
best friends
fun
acceptance
warmth
laughing
helpful
great joy
spirit
I couldn’t have done this without the help of two wonderful, kind and loving young women who went with us to camp. Ashley and Emily were perfect there. They were so thoughtful and excited for me. We all were blessed so greatly. If I didn’t have a Mom and step-dad like I do, none of this would be possible. It is because of them that I had this opportunity to share a message that I was given by God. I am so thankful today for what happened and how God used my story and my life to give hope and inspiration to many people. It’s not because I’m so amazing, but because I’m willing that this happened.
I sit here smiling.Love, Karly
My Favorite Memory-I sat on the deck of my beautiful cabin with some other adults who live with great physical struggles and depend on devices to communciate
The artist Bill Butler created this painting with the help of every person at camp-he was so loving
July 5, 2009
· Filed under Uncategorized
I had my 24th birthday on July 4th. My family was here with me. We had a small gathering to celebrate my birthday. Since I was a baby, we went to the parade on July 4th, and then had a family gathering. Since it was so nice we were able to eat on our new patio. I planned the menu with Mom. It was sweet corn, my Mom’s potato salad, a pesto pasta salad, baked beans and fried fish that my step-dad Gregg caught on his fishing trip. It was great! My Uncle Allen made it so perfect. We all loved the fish. I was able to eat some of the meal, but I planned it so everyone would like the food. Most people are able to eat dairy and gluten, but I love smelling what I couldn’t eat. Mom and Gregg picked a bunch of strawberries last week, so we had strawberry shortcake for dessert. It was great!
Here are some photos.
Emily and me with our sunglasses
Allen and Kristin are engaged!
My Mom and I
Thanks for the fish Gregg!
On Our Patio
My grandparents
My friends Bethany and Suedi came to visit.
The Fed-Ex truck came and delivered flowers from my friend Ashley. That has never happened to me before!
My sister Leah was not here, because she came home for Grandpas funeral, but she sent me some amazing gifts. She sent me a new sound system so I could listen to my music and books on tape better. She also has an Ipod coming that she is putting lots of fun music on. She and my Dad bought it together. I am so glad they’re supportive of my interests.
My Mom and Gregg got a new Flip Video camera so we can record more things and make our own videos. I will post something soon on my blog after we get it figured out.
I shared my documentary with my family for the first time. We have been working on it for a year. It is not perfect but it is getting close. I will be sharing it at camp. I was so appreciative of my families comments about the film after they watched it. It is eleven minutes long.
Happy 4th of July everyone.
Love, Karly
July 5, 2009
· Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged Chapel talks for camp
I am leaving tomorrow morning to go to camp for five days. My family is coming with me, and two of my caregivers, Ashely and Emily. I am very honored to have been asked last winter if I would be the chapel speaker for the adults with physical disabilities. I have four talks ready to go and I have asked my mom to read them for me. I don’t feel anxious about it, but I am very happy.
The camp directors have been so encouraging and excited to have me come and talk. The theme for the camp is “Molded for a Purpose.” I thought it would be good to share some of my beliefs about how God molds each of us for a purpose. I shared this with the director last winter.
Love, Karly
God has a purpose for every life. If we ignore the purpose He has given us, our lives are so much less than they could be. For those of us who live with great challenges in our bodies and minds, it may be harder to find the purpose God has given to us. We can get so caught up in anger and sadness and isolation that we don’t give God room to help us figure it out.
I don’t believe God has created us to have accidents and birth defects, and illnesses. That is something that has happened because we live on this earth and are not yet in heaven. There are so many things that are not ideal here on earth, but the great thing is that when we allow God into our challenges we are even more blessed than the average person would be.
I have a wonderful relationship with God. He has given me perspective that I doubt I would have if I were a typical person. One of the things He has created me to do is to share my story and give people hope and insights that only a person living with my disorder can give. He has given me the gift of music. I have been able to compose the songs He has put into my mind. Through great effort, my music teacher and I, bring that music out so others can be inspired. I hope they are encouraged to follow their hearts passions, by hearing my songs. Because of God’s place in my heart, I feel great love and compassion for others. While that may not seem like a gift, it is one of the best things to share with others. It is simple. It warms their hearts to love.
I have never said a word on this earth, other than the sound a cat makes, when I was a baby, but it hasn’t stopped God from working through me. God is my strength. He has molded me for His purposes, and I find my best days are the ones I wake up and ask God what He wants me to do that day…and then I do it.
June 26, 2009
· Filed under Poetry, Rett Syndrome Intelligence, Writing, Writing Memoirs
Grandpa, Leah and I when I was one month old
I wanted to let everyone know that my Grandpa died last Friday night on June 19 at 11:30. His children were all around him. I am so glad that I got to spend his last day on earth with him. I look forward to being free like he is now, of the things make this life difficult for me. I know we will have a long hug, because in this life I was not able to hug him. I love the Grandpa I spent the last two months with. God’s peace Grandpa! I know you know what that means now.
Love, Karly
I am taking a writing class. We are focusing on poetry right now, so I thought I would write a poem about my grandpa. Here is my rough copy. After class today I will try and post my edited version.
Sending Grandpa Home
I came to earth with challenges you had never seen
I’ve lived a life apart from yours
I understood what you said to me but did not answer with language you received
You felt pity, I felt the same
I wanted a Grandpa who could play
In your final months I saw a change
I felt your love
I saw your pain
You tried to understand
You heard my typing and questioned me about who I am
I know you saw my chair, but it no longer scared
You saw me
We could be real
We saw each others eyes
I will see you soon Grandpa
I will see you soon
Karly W
June 19, 2009
· Filed under Disability Awareness, Rett Syndrome Intelligence, Understanding Rett Syndrome
Grandpa and me in May 2009
I had an unusual and wonderful time today. I knew this morning that Grandpa was not doing well and would not be alive much longer. It was so important to me to get to the nursing home to see him again. We got there around 9:30A and stayed there until 1:30P.
He and I have been seeing each other more in the past two months, than we did for many years. I looked forward to seeing him every single time because he started really seeing me. In the past, he didn’t know how to interact with me, so he would either ignore me or talk loud to me. But since he has gotten very ill, his view of me has opened, so he can see me. Those of us who struggle in our bodies from a very young age, often find those who are elderly to better relate to us. If they don’t pity us, but can see us for who we are, we heal. For me and Grandpa there became an understanding. When I sent him cards the hospice nurse said he valued them so much. He couldn’t believe that I would notice him. He always thought he needed to care for me.
I look forward to going to heaven when it’s my time. I don’t fear death. I know some people think they need to shelter me, because I might not handle it too well when someone is dying, but I think I am as real as anyone in the room. I live with death nearby. It’s not frightening to me. I understand that in heaven I am free. I’m not stuck in this body that has given me so many struggles. I was glad to be there today. Grandpa was able to put his arm against my leg while I rested it on his bed. He seemed to find comfort in it. I told him good-bye and that I would see him in heaven. I hope he goes without struggling so much. There is little to stay here for. I love what has become of a long and difficult relationship. I feel peace and I wish Grandpa the same. He will see me soon through new eyes.
Go in peace Grandpa. I love you.
Karly
June 16, 2009
· Filed under Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged Rett anxiety and stess
I wrote about how I have been feeling for the past week. My Mom learned recently at a Rett event that girls with Rett have high anxiety, so maybe that’s what I’m having, but it stinks. I wrote about how I’ve been feeling inside on MY RETT BODY.
love, Karly
June 5, 2009
· Filed under Rett Syndrome, Writing
I have an announcement to make about my documentary. It has been a long time getting to this day, but it is close to having the first 13 minutes ready! Our film guy, Dan, is working on putting some more scenes into the film and my song For Strength. When that is done it will be ready to show. I hope to have it done for camp in July. It will help introduce me to groups, so I don’t just show up and have someone start talking about me. That is always awkward. I have worked hard with my Mom and Gregg and Dan to get it just right, because it is about me. I want to make sure that it is accurate. I wrote the script over a year ago.
The woman who I chose to be my voice, has a brother who has autism, and went to school with my friend Elizabeth. We may make a longer DVD at some point, but for now, I’m just going to have the first 13 minutes. I hope it helps people see those of us who are non-verbal in a different way..that our lives are not all that different on the inside than others. It will be fun to share it with everyone.
Love, Karly
May 24, 2009
· Filed under Companion Horse, Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged Rett Research fundraiser
It is a beautiful sunny morning here. We love them, and I am outside writing this blog. My Mom has our small recorder so while I’m typing she’s saying my words into the recorder.
I want to congratulate my friend Tara Reddington in Rhode Island for the fund raiser they did yesterday to support Rett research. They raised a lot of money to help find a cure for Rett Syndrome. Their daughter Grace, is a beautiful young girl who has very severe symptoms related to Rett. She has been in the hospital a lot. Tara has been so kind to me, and respectful and excited to hear of my experience in living in a body that has Rett Syndrome. Please check out their blogpage: http://www.theraceforgrace.com/
I am aware that I am fortunate. I struggle with many things related to Rett Syndrome, but there are girls and women who are so much worse off than me. I am recovering from another bladder infection and the resulting symptoms of many small seizures and exhaustion. If I could prevent myself from getting sick, and all the trouble that comes with it, I would be so grateful. We are working hard to stay healthy. I am writing a lot for the camp that I am speaking at this summer. I have most of my talks ready. We were invited to the camp directors house yesterday. They made a beautiful day for us.
Here are some current pictures of me walking with Gregg, and me with Beau on our new patio.
Love, Karly
May 16, 2009
· Filed under Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome
I am sitting on our new patio with the table that Mom and I found. It works great because my wheelchair can go right up to the table. I am typing with my keyboard on the table. It is a sunny morning. Beau is getting his hooves trimmed.
I wanted to share that I am wearing sunglasses. I usually can’t stand to have them on my face, but today it is great. I love how they help my eyes. Here’s a picture of me wearing them.
It helped me in the sun to wear the sunglasses
I don’t know if other Rett girls have the same struggle I do with glasses on their face, but it has always been something I can hardly tolerate. When I was very young I wore eyeglasses because my vision is so poor. But by the time I was five I couldn’t keep them on my face for more than five seconds. They drove me crazy. They felt so ticklish on my face that I couldn’t keep them on. Today is the first day that I’ve been able to wear sunglasses. Last summer we discovered that a visor is ok and I can usually keep it on for a while before I get restless.
Our new patio is great for my wheelchair
Karly
May 15, 2009
· Filed under Rett Syndrome, Understanding Rett Syndrome · Tagged Rett syndrome Pain
I wrote about the struggles I was having for two weeks and how it affected my body on My Rett Body.
Karly
