Archive for September, 2009

I’m Hiccuping and I Cannot Stop

September 29, 2009 · Filed under Rett Syndrome, Understanding Rett Syndrome · Tagged

I am feeling better today, but yesterday I had the hiccups five times.  I’ve had them throughout my life, but when I get them they really hurt because I have them for up to an hour each time.  My stomach gets really sore when I have them, so it’s frustrating.  The thing that helps me is drinking, but I usually don’t feel like it because it makes my stomach hurt worse when I have so much liquid in it. 

My Mom says when she was pregnant with me, I had hiccups for long periods of time, even then.  I don’t know if other Rett girls have this, but I thought it would be interesting to find out.  Let me know if this happens to your girl too.

Love,  Karly

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How Acupuncture Helps Me

September 24, 2009 · Filed under Rett Syndrome, Understanding Rett Syndrome, Writing Memoirs · Tagged , , ,

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Me feeling great today

I just returned from my acupuncture appointment. I feel so calm. I’m not hyperventilating and I am not holding my breath. I love how I feel. If I felt this good all the time, I would be so happy.

I have been going to acupuncture appointments weekly for almost a year. It has helped my mind the most. I feel so relaxed most of the time, when I have the needles in me. It helps my thoughts relax. They are often very active and I have a hard time focusing, but after acupuncture, I really slow down. For me, that gives me the chance to feel so content. It feels like I’m in a different body, one that is not struggling with so many movements and breathing issues. I love going to get acupuncture every week. It has changed how I feel.

People ask me how I sit still because I usually am so active, that I rarely sit quietly. I’m always moving. There are times in my acupuncture appointment that I am restless, but usually I am very calm. Sometimes I sit up then lay back down, but I rarely have any breathing issues while I have my needles in. But today I didn’t even sit up for 40 minutes. I didn’t even want to sit up after they got the needles out. Most of the time, I have about 25 needles in. Sometimes they fall out from my movement, but overall I feel so much better afterwards. I am glad we discovered it for me.

When I first started with acupuncture, I was really hurting. My body had so many hot spots, and then freezing cold areas at the same time. I was restless. My stomach was hurting. I couldn’t sleep well. I feel warm most of the time now. Last year my feet could be so cold they were blue. Or one of them would be really cold and the other hot. One of my ears could be freezing and the other one bright red from heat. It was miserable, but that is gone.

I thought this might be helpful to others who are looking for ideas for ways to help their Rett daughters.

Love, Karly

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Beau was feeling relaxed today too 🙂

Special Olympics beau

Beau loves to wear hats

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My Life After Graduation

September 23, 2009 · Filed under Facilitated Communication, Music & Art, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged

I left high school in the Spring of 2007.  I was so afraid of leaving, because I had so many friends and a place where I found acceptance.  I wasn’t unusual there.  I didn’t get noticed because of how different I was.  I spent many years there.  It was all I knew. 

I remember when my sister graduated from high school.  It was an emotional time for her, but it also a time for celebration.  She had a lot to look forward to.  She wasn’t afraid.  She didn’t have any physical reason to expect to need care for the rest of her life.   She had choices.  I was so anxious about graduation that I threw up just before leaving for the ceremony.  I knew some of my friends who had graduated and I had never seen them again.  I tried to keep up with them, but their lives went in another direction. They moved into grouphomes,  went to adult day programs or work programs, and their lives became involved with new friends.  

This may not sound all that different than the average persons experience, but for someone who is unable to speak, so I can’t make phone calls on my own and I can’t drive anywhere to get together with friends, it is a huge barrier.  My new friend that I met at camp this past summer chatted with me on Facebook yesterday, but it was only because my Mom was here and on Facebook at the time,  that I was able to visit with her.  She struggles to type easily, and is not able to drive herself so our chances of seeing each other are very few.  By the transportation and schedules are considered and our health and energy limitations, let alone all the scheduled appointments to keep us healthy, and our weekly activities to keep us occupied, our lives become pretty predictable. 

I sit here smiling today, because with all of the challenges I face to keep in touch with friends and have a life of value, I love my life.  It is a life worth living for me.  I am with my Mom most days during the day hours, so we are able to go places and I am able to communicate with her help.  I am working on helping researchers study Rett, I go places that are interesting, I help others understand people like me who are non-verbal and silent, I speak at events when I am invited, I compose music that I can share, I ride horses at my friends house.  I was able to spend the week-end with my sister Leah.   I am outside as much as possible.  The group that we are starting is expanding into our home town and the opportunities we have to serve others and also have artists and writers work with us, gives me much to be glad for today. 

I want to tell others who, like me, live with a body that creates many challenges for them to not be afraid.  There is life after graduation and for me it is a great life. 

Dream big dreams.  Dont’ let others determine who you are by your diagnosis.  Your life is so much bigger than the limitations of a diagnosis.  When our lives have great things going on, our spirits are free, and we have hope. 

I send my Rett friends a big hug today.

Love, Karly

Working on Australian Rett Research papers

Working on Australian Rett Research papers

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My sister Leah and I at Pioneer Park

 

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I Am Now an Aunt

September 17, 2009 · Filed under Uncategorized

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One Day Old

Connor was born on September 12th.

Love, Karly

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My Trip to the North Shore

September 14, 2009 · Filed under Caregiver, Disability Awareness, Rett Syndrome, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

Gregg, Mom, Karen and I next to Gooseberry Falls

Gregg, Mom, Karen and I next to Gooseberry Falls

My Mom, Gregg, friend Karen and I just returned from ourvacation on the North Shore of Minnesota. We had a wonderful time there.  I had never been to Duluth so I was amazed.  We stayed in a house that was beautiful.  I slept great there and was so calm.  I didn’t have nearly so much breatholding and hyperventilating as I do here.  It seems that being by a lake helps my body to be calm.  I loved it. I want to feel that way everyday!

 We went to a place called Gooseberry Falls.  It was amazing.  I could not see the waterfalls, but I could hear them, and I have seen the photos that we took. They are so beautiful.  There were trails that I could get pushed on with my wheelchair, so that is what we did.  I could hear the waterfalls. It was so perfect.  I think that was my favorite place.

 I also went on a boat tour of the harbor.  It was so interesting listening to the boat captain explain about everything that we could see.  It was so sunny and relaxing.  I learned a lot about ships and the Lake Superior that we were on.  It is a fresh water lake, but it is the deepest of all the great lakes.  It was cold in the water, but I was able to walk on the sand with Gregg’s help. It felt so good.  I wanted to sit down and play with the sand, like I have always done my entire life.  If I can touch the sand I sift it in my fingers.  It is fun to feel it, but I can’t stop my hands sometimes from putting it in my mouth.  That is frustrating because it calms me to play with sand, but it is gross in my mouth.

My feet walking in the soft sand along Lake Superior

My feet walking in the soft sand along Lake Superior

Gregg helped me walk on the shore

Gregg helped me walk on the shore

 

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

The boat was wheelchair accessible. It was very relaxing

The boat was wheelchair accessible. It was very relaxing

It was a trip that was much shorter because it was not so far to drive.  I loved it there.  I hope we can go again next year.  It is not impossible to go on a trip when you have a lot of needs, but it takes a lot of work for my parents and friend Karen who came with.  They worked hard to help me experience something new.  I am so glad for their love and support that gives my life adventure and experiences that I could never have on my own. It is always harder to be away from home, because things are set up so well at home, but when we are away I experience so many amazing things.  I love to be able to travel.

 Love, Karly

 

My Mom and I on the tour boat

My Mom and I on the tour boat

Gooseberry Falls, my favorite part of our trip

Gooseberry Falls, my favorite part of our trip

I felt so calm

I felt so calm

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Rett Researchers and my Role

September 14, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I’m excited today because I have been contacted by three different Drs in the past couple of months who are doing Rett Research.  One was from Italy, one is from Australia, and the others are from our state of Minnesota.  I haven’t been able to do the paperwork yet, but my Mom and I are starting on it today.  The Dr from Australia is Dr Helen Leonard.  They are excited to have me answer the questions because it is the first time they have someone who has Rett Syndrome and can answer their questions.  It is fun and scary for me, because I want to help them. It is hard for me because so much of my life I wasn’t believed so the difficult questions about the details of Rett Syndrome were asked of my Mom not me.  I am so honored that they are interested in my answers. The group from Minnesota sent a huge package for us to fill out.  They said I could answer some of the questions too. Their questions include some of the tests that were given to me in school.  I hated them.  They always show those of who have many physical challenges and are non-verbal to be very mentally impaired.  I don’t want to continue that belief about girls with Rett.  They haven’t been as easy to convince that I could answer most any question they would have about my life with Rett, but I do not give up hope. 

I know that for me, because it is easier for me to communicate, that my job is sharing my life and story so I can help others who live with this disorder.  I don’t want to just live for me and when I die to have a world that is the same place it always was for my silent Rett friends.  I love my life even when it is hard.  I feel respected and honored today.

 Love, Karly

 

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Hope and Much Joy

September 5, 2009 · Filed under Disability Awareness, Music & Art

This has been an incredible week.  I have wanted to have a group of friends who are interested in doing meaningful things together, for many years.  Since I am not in a day program, and our town has very little to offer adults with disabilities, it has been lonely for me.  It is not good to be without friends to do things with.  I have so many things I want to do with others and now it is finally happening.

There is a beautiful place in our town for people who are retired.  It has everything from a pool to beautiful flower gardens, and walking paths to restaurants, and Dr’s offices, a theater, a library and very nice people in it.  They’re always so sweet to me.  My group of friends and I are going to meet there every week and do service projects and have artists come and join us.  We are eager to help others. We are so excited that they are eager for us to come there.  It is so fun for us to have a beautiful, kind place to go.  Many times adults with disabilties are given the back rooms with little interesting things to do. We are suppose to be content with projects that others give us.  We are not consulted about what our dreams are for our lives, but to be given the freedom to choose an activity that matters brings hope and lots of joy.

I am content.

I am smiling 🙂

Love, Karly

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