Archive for June, 2011

On the North Shore

June 24, 2011 · Filed under Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

Outside our cabin

The cabin was perfect to make great food in

I love being able to visit with my keyboard. I can do that easily with Mom and Amy

I feel so glad for my Mom

I love Leah’s cuddles

We had a lot of fires. They are so calming to me.

I couldn’t get close to the water because I can’t walk on the rocks, but I could hear the waves from our cabin.

I am sitting on our patio this morning in the sun, at home.  We got home yesterday from our trip. Leah came home from Ohio and our good friend Amy, who is like a sister to me,  went together with our Mom to a beautiful cabin.  I feel so glad for it.  I was so calm the whole week we were there.  I slept a lot.  I didn’t hyperventilate hardly at all.  I felt relaxed.  I was so relaxed I didn’t feel like writing.  I am sorry Leah had to go home so soon.  Her life is busy and I miss her.  But I loved seeing her so much this week. It was raining the whole time, so we didn’t go to the Gooseberry Falls, but it didn’t matter because we were in a beautiful place, with a fire and each other.  

I loved being here with Leah

I have a poem that came to me while we were there.  I titled it: 

A Resting Place

People get busy

They overlook, overwork, get weary

keep going…and going

They ignore, signs of hope

the call to rest

leaving behind and getting away seems impossible

like theres obligations bigger than they

It’s a call often ignored

but the North Shore restores mind and soul

It gives a break from life as we know it, 

providing comfort in its solitude.

Thank you Lake Superior for helping us slow down

to see

hear

look 

explore what is lovely, inside each of us 

Together we love

apart we long for peace and harmony

Love, Karly 

Lake Superior looked like the ocean!

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I Love Our Piano

June 17, 2011 · Filed under CD production, Composing for piano, Music & Art, My Faith, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I remember sitting on my Mom’s lap while she played our piano.  The youngest I can remember is 9 months.  I was told she held me everyday she could play.  I sat in front of her until I was too big for her to play around me.   We took a few pictures but it usually happened when the only other person there was my sister Leah. She is a great piano player too.  I remember when I got older, about 3 years old I think, I could sometimes get my hands to reach for the keys.  I would drum them with my left hand just like I do to this day.  My Mom says it looks like I’m tickling the keys.  

4 years old

This memory came back to me this morning when I asked my Mom to play a song on the piano.  She doesn’t play often anymore like she used to.  She played a song I used to hear her play, “Love Can Build A Bridge…tween Your Heart and Mine.”  I love that title, because it’s what music has done for me.  It has given me a bridge.  Something that can cross over a huge barrier that was caused by Rett Syndrome.  I don’t have words, but I have some songs that have gone into the world through me.  I thank God for those songs.  They have given me a message to share with the world.  That message is: don’t assume that people who can’t speak, lack intelligence.  

I struggle daily to breathe, to feed myself, to do what others do without thinking about it.  I am fortunate because I can communicate, even with Rett Syndrome, but it is a hard life.  Today, I feel glad, because even though I’m struggling to breathe normal, I feel happy.  I am surrounded by flowers.  I have family and friends who believe in me.  I have hope that this world’s heart is changing towards girl’s with Rett Syndrome, because of those who believe and try to help us have a great life. 

I send my music into the world today.  I love this song.  I composed it and feel joy every time I hear it again.  My sister Leah is playing her viola for this song.

For Real Friends

In the studio. Gregory Thiesen played my songs and Leah played her viola. My music therapist, Karen Bohnert and Barbara McAfee have given me so much hope.

Love, Karly

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Finding Joy Again by Drinking More Fluids

June 16, 2011 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

The Hummingbirds love this vine in front of our house.

I have so much joy in my heart this week.  I have not had a seizure for nine days and I feel great!!  I have had many good things happen too.  I feel so excited to share them with you but most of all I wanted to let you know what we have been doing different that has helped me feel better.  

I have been working with a dietician for the past year.  We have made many changes to my diet but the biggest change is I started to drink more fluid everyday.  She thought I was probably dehydrated because of my hyperventilation and drooling that I can’t control.  I lose so much saliva everyday from drooling and lots of hyperventilation keeps my lungs from holding onto moisture. That’s what she said to my Mom, so she wanted us to start having me drink lots more everyday and to start increasing my electrolytes.  Here’s what I am taking.  (Crayhon Research-Peltier Sport Water-4 Tablespoons Daily in water/juice) We were nervous when she said to increase my fluids to at least 100 ounces each day because I have a really hard time drinking.  Especially anytime after noon.  I was determined to try it and my caregivers have really helped me keep up my drinking.  I need assistance to drink but I feel so much better in my head and in my body.  I usually drank about 70 ounces each day but now we try at least 100 ounces.  I stopped seizuring after the third day and I haven’t had any feelings like I’m going to have more.  She said dehydration can cause seizures.  I know many girls with Rett struggle to drink.  I do too, but if I drink regular throughout the day, it’s easier for me to swallow.  If I stop for a long time I have a hard time starting again, so we drink about every few minutes.  I hope this helps someone else today.

I am so happy about next week.  My sister Leah is coming home and we are going to Duluth!!  Just my Mom, Leah and Amy.  I can hardly wait.  We will be in a cabin right on lake Superior.  It’s so fun to do that with everyone.  I feel so much better near water.   I know I will be writing while I am there.  I hope I have some poems that come to me.  

My nephew was with us yesterday.  He is 21 months old and he LOVED playing in Beau’s water bucket and trying to sit on Beau’s back.  

Connor found Beau's water bucket in the barn.

...and climbed in

We had fun watching him

Beau has never had anyone sit on him. We are all too big!

I played my favorite game with my step-sister Sara. Connect 4

Love, Karly

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