Archive for August, 2010

Heaven on Earth

August 22, 2010 · Filed under Caregiver, Disability Awareness, My Faith, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I have had a wonderful day remembering this past week.  I wish that the days we have at camp were here more than once each year.  I have so much contentment there.

Normal is overrated

It’s something that many people never think about; what it would be like if you were not noticed for having something of great value to share with others.  If your contributions to this world were seen as minimal.  If you were noticed for having a bandana that you can’t stop chewing.  If you needed help to eat your food at times, and when you did it was all over your chin.  When I am with my family and when I am at camp, these things are so far away.  They still happen but they are not the only thing people see.

Ashley is so kind to me

Deb is such a great friend.

Emily is not excited about having her picture taken. This is her foot!

This year I feel so fortunate for all the amazing things that God has given me to do.  I feel so blessed, but I can say that being around others at camp who love and serve those of us with high needs has made my heart so glad.  I want to have more of that than one week each year.  I want everyone to see people with disabilities as valuable humans on this earth.  That we have compassionate, understanding hearts, that we are spiritual in ways that the typical people aren’t.  That we have gifts to offer just like all people do.  I think this world would be more loving if there were more people like the ones I spend time with at camp.

Mitzie and Audrey on the hayride

On the last day of camp we were sharing where we learned, what we learned and how we see how we can contribute.  My friend Mitzie said that the best friends are the ones with disabilities.  They are the most real and grateful. I long for heaven on earth.  I hope I can share that with others.

Our last session together

Love, Karly

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A Week Full of Love

August 21, 2010 · Filed under Disability Awareness, My Faith, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

Emily and Ashley came with us to camp. I love both of them. It was a great week for all of us.

I am so happy with how this past week has gone at camp.  I discovered some amazing things about myself and I also saw some people who I met last year.  Their hearts and lives have changed because of their experience at camp last year.

During the first chapel talk I showed my story that was on TV.

I started working on my talks in May. My Mom read my messages.

I didn’t know it last year, but this camp had never had a speaker with my level of disability before, so the guests who had higher physical needs were in chapel with a person who had no limitations that were visible. Our friends Dave and Margie asked me last year if I had a message to share at camp. It was exciting and a little scary, because I had never spoken for four days in a row before then.  I didn’t know what it would be like and I thought maybe my messages would not be helpful to others.  I am so glad for Dave and Margie’s belief in me and all the extra things they did to make my life comfortable there.  It changed my life to be given that opportunity.  Since then I have spoken at a number of big events, so I felt more ready this year to be seen and heard.

My step-dad Gregg, made this week even better because I asked him to help me lead discussions with my chapel talks, because this group of adults all have much to say and need a great place to do it.  There is so much love and peace there.  People who normally would be overlooked and judged by others have friends who love and believe and serve with them.  We are the guests and they help us.  It’s so much different than most of our lives when we are not at camp.

Gregg gave us more to think about.

My friend Doug who was so overwhelmed with life last year because of intense pain and depression and needing to move to a different home, was changed this year.  He came to me the first day and said he had a message he wanted to share with everyone at camp.  I listened to his ideas and told him I thought he should talk with Gregg about it because he had important things to say.  He wanted to share them during the evening chapel with everyone who was at camp.  Gregg gave him direction to focus his thoughts on what he wanted to say and with my Mom’s help typing his words, they were read by our friend Dave during the evening.  I was sleeping but I heard about it and I know that Doug’s spirit is free.  He is a new person and I feel so happy for him.  My friend Mitzie asked to lead the singing this year and that is new too.  She did an awesome job.

Doug and Gregg won a game.

Mitzie went on the zipline. She loved it.

There is so much joy in my heart today.  I saw hope given to many and insights for all of us.  Everyone is sad to leave when it’s done.  It’s not easy to say good-bye to such love.  For most of us it is too long to wait until next year when we get to see each other again.  We live far away from camp, so most people are in Iowa and we are in Minnesota.  But I am glad for my computer and ways we can stay connected.

I met Deb at camp last year. We went on a hayride together.

My Mom, Gregg and I talk every morning before I get out of bed. Here I am at camp on the last day. I wrote my message for the day before getting out of bed.

This is what I shared during my last day at camp this year.

August 20, 2010-Special Touch Iowa Getaway

I’m so glad for the opportunity to have been here again this year.

Many of you know how much effort it takes to come to camp when our needs are high.  It isn’t easy, but our hearts are so filled here, that we face that challenge with joy.

I’m amazed by the hope that I have seen in your eyes this year for change in your life.  It’s not something that I saw last year.  I saw resignation and disbelief that you could also have a life that God could use to make this world a better place. That you don’t have to wait for heaven for a life that ministers and loves.  That God sees you as His partner on this earth, to spread peace, because of His love.

I want to have that vision for your life stay with you.  Don’t let it fade.  Don’t assume that if you are having a rough time, that you have lost it.  I go through periods of time where I don’t feel good for days, sometimes weeks.  But I ask God in those times to help me hold on, to not forget what He has done, and how He will continue to hold me until I am able again to walk beside Him and not be carried by Him.  God knows what we are capable of.  We don’t!  We get caught up in what we want to have happen in our lives, and forget that God has a much bigger vision for us than we could possibly have for ourselves.

God knows who we should meet.  He knows who will help us fill out His plan for our lives.  We don’t need to force anything  But I can tell you that if I don’t respond when God gives me a chance, even if it seems small, I miss an opportunity to partner with God.  Don’t miss the small opportunities.  They are NOT small to God.  Don’t get so worried about the big things that you neglect the little.

God will open doors to you and give you a life you feel great about. I have found that my life, even with all it’s struggles, is a life that I love.  And maybe God is stronger in my life, BECAUSE of my disability, not in SPITE of it.  I need to be reminded of that in the difficult times.  I have family and friends  to help me do that.

I want to tell you that I want to keep in contact with all of you this year.  I don’t want to be isolated from any of you.  We can encourage each other and we are all great prayers!  There is no need to be alone.  If we could all write or send messages in the mail or even by email or some other way, I would be very happy.

I want to finish by saying, I have loved this week and I AM FREE!

Love, Karly

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Voting and Camp

August 14, 2010 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

My Mom went into the booth with me and filled out my ballot. I told her who I wanted to vote for at home.

After we voted.

I was feeling great on Tuesday when it was a day to vote for the primary election.  It was something I had never voted for before, so when my Mom asked me if I wanted to go, I said yes!  It was fun because we vote out in the country in an old building.  I think they were confused by the young woman who came and voted and cannot sign her own name.  My Mom was patient with them, because I am a registered voter, but they still looked silly with their weird looks.  We asked them if we could take some picture, because the sign says “no cameras”, but they allowed it.  Here are a couple of photos taken by Emily.  I didn’t know most of the people on the ballot, but I knew who I wanted to vote for.

Ashley helped us get used to my new computer. Here we are preparing for my camp talks.

I have been very busy getting my talks ready for camp this week, because we are leaving on Monday for Iowa.  I am feeling good, but I wasn’t for many days, so when I do feel well, I have a lot to do.  I am tired.  I want to feel alert when I’m at camp, but I always get tired when I travel.  I am the chapel speaker for the adults at camp who are intelligent and understand what is being shared.  It’s my second year to do this and it has taken me many months of writing and talking and changing things with my mom and Gregg helping.   I’m going to have more time for people to talk this year because for many of us living with high physical needs, we often don’t have friends who sit and just listen to us.  We have people who care for us, but not people who just visit with about the things that really matter in our hearts.  It was the best part of camp last year when we just sat and visited about our lives and our dreams and frustrations.  So this year will be better for all of us.  I have many friends at camp.  It’s a loving place to be.

Our friend Dave came to pick up my stander and walker so I could have it at camp. Gregg helped get it them in the trailer.

Here are some of my thoughts that I will be sharing the first day.

God gives freedom.  It’s people who often take it from us.  We need to depend on God.  We can be useful to God even when the world sees us as useless.  In fact, I think we are better used by God through our struggles than we are in our perfection.  When we know it’s only God who could have done what we just experienced or witnessed, we are so blessed.

I will share more later.

Love, Karly

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