Archive for November, 2011

Thanks For Giving

November 21, 2011 · Filed under Caregiver, Companion Horse, Disability Awareness, My Faith, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged , ,

It has been a wonderful week for me!  Many wonderful gifts have come into my life and I am so thankful today.  The medication finally stopped tormenting me and I am feeling more like myself.  I’m not interested in medication unless it’s absolutely necessary again, so my gratitude is that we tried it, found out what happened and were able to get off of it.  

I was writing a lot last week.  I had many opportunities come to me that I wasn’t expecting.  One of them was to be a chapel speaker at Teen Challenge.  I can choose the date so I asked for one after Christmas.  I worked on my talk for about six hours so far and it feels really good.  It’s a miracle that I am able to share anything at all and I feel so fortunate, truly fortunate to be given an opportunity to share for up to 50 minutes.  It will be in front of 150 people.  Their director, Steve, said that my story is very inspiring especially to people who have some really hard times.  I feel so blessed to be seen as someone who has a message to share!

I was also given the opportunity to write for a horse magazine called Apples ‘n Oats.  I will be writing for the Spring edition, but their winter edition has my favorite photo from riding this summer with a brief message from me.  It’s so beautiful.  It will be an entire page of their magazine, so I feel very happy about that too.  applesnoats

This is the photo in Apples n' Oats. My Mom took it while I was riding in November.

I was contacted because my song Ever After was used in a meditation CD for caregivers.  I think it sounds like a beautiful way for people who provide all kinds of care to others others, be provided and cared for too.  Creative Health Care Management

I wrote a poem for my new friends at Bible Study, but it’s a poem for everyone in my life who has become dear to me.  That is many people this year.  I feel forever changed and so much love.

When Time Stood Still

Karly Wahlin

I saw my life stretching before me, 

longing for connection with others

reaching for a hand so elusive

asking questions not heard

I saw the awkward glances in my direction

hoping they wouldn’t expect 

more than I could give

I begged God for someone who 

knew with their heart

someone who saw with their kind eye

who gave generously of their friendship

seeing my contributions as enough

Hope restored is a powerful thing

giving strength where there was isolation

bringing friends into a circle warmed by 

the fire of unity

I found you!

I have been blessed.

My favorite photo of me and Beau


My dear friend Laurie, and Chester. They have blessed me with some of my favorite moments.

Love, Karly

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A Documentary You Must See!

November 11, 2011 · Filed under Uncategorized

I just watched a movie and I could laugh with excitement, because it’s a documentary about people who have autism and communicate through typing like I do.  It’s the story of Larry and Tracy who discover that their life’s purpose is helping others understand that the shell of our bodies can cause others to think that we are not intelligent.  That our actions disguise what our minds are capable of through no fault of our own. 

I feel so happy about it because they went on a trip around the world visiting other people who have autism and also type to communicate.  The movie is called Wretches and Jabberers.  We bought it to support their work.  I’m going to watch it with my friend Elizabeth when she comes in a few days.  To say I feel inspired, is not accurate, I feel touched, to hear their story and to see how much we are alike in our desire to be valued as humans in this world. I hope that others who see this film are awakened.   I watched it with my Mom and I saw her tears. I want to say that without the support of my Mom I would be so lost.  I haven’t had many carefree days lately but I feel like my mind is returning to normal slowly. My Dr said it could take up to two weeks to have the medication stop it’s side effects. 

 The thing I feel most grateful for is my Mom’s presence and belief in me.  I saw how much the people in the documentary suffered at the hands of others when they were young and I feel so sorry for them.  I am fortunate to be where I am and today I feel glad. I hope you have a chance to watch this movie. 

  http://www.wretchesandjabberers.org/about.php

Love, Karly

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The Sun Will Come Out Again

November 4, 2011 · Filed under Composing for piano, Disability Awareness, Music & Art, My Faith, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged , ,

I love being at the lake with my Mom

This is in our front yard.

I felt like it was impossible for me to feel great again, last week.  I was so unhappy that I thought it would be this way now.  No matter what I said to myself I couldn’t feel hopeful inside.  I was very afraid and it caused all kinds of trouble in my body with Rett Syndrome.  I prayed, I talked with my Mom and Amy, I walked, I watched relaxing videos, I listened to soothing music, I went outside as much as possible, we went for long, relaxing drives, I listened to books on CD, I listened to sermons from church and nothing stopped how my brain was thinking.  I felt so crazy!

I decided to share this today because I’m almost done now with the seizure medication that caused all of this to happen to me, and I feel great today!  I never want to feel like that again.  I would rather have a seizure than feel crazy.  I don’t know if other people feel that way on their medication, but if any of my Rett friends do, I feel so sorry for them.  I have never felt well on the medications that are suppose to stop seizures, but this was the worst.  I think if I had to do it again, I would say No.  My Mom had me decide if I wanted to try the medication and didn’t start it until I said, yes, it was time.  I feel glad for that, but I feel really glad to be done.  We are seeing my Dr next week to see if she has any other ideas.  She wanted me to start anti-anxiety medication to stop how crazy I felt, but that made it worse.  

I’m eager to say something: In my life I have had many hard days with Rett Syndrome.  I have had days when I couldn’t stand to be in my body anymore, and I get discouraged.  I pray a lot for those days so I don’t feel so alone in my struggle.  I haven’t always felt joy in my life.  There have been many days that I can’t imagine a harder life than the one I have lived for 26 years. But then days like today come and I see how beautiful life is and I see that I have not been alone, that God has given me a great gift.  How He has used the hardest times in my life to give me understanding, courage and gratitude.  I know that God doesn’t like Rett Syndrome.  And I believe with all my heart that He didn’t create it.  That it’s something that happens to humans for some reason we don’t yet understand.  I believe that God has given me the ability to communicate my experiences for a reason, and today I am sharing some of those.  Only God can make sense of Rett Syndrome.  I’ve been surrounded by great, loving people.  My Mom and I have been through some very painful days together.  They have been hard on her.  But today, our lives are better and our spirits are happy.  We have many friends to thank for that.  People who have entered our lives recently and people who have been here with us through much over the years.  

I wanted to share one of my favorite songs that I composed when I was 16.  This is one from my CD, In My Own Voice.  It’s title is:  For Real Friends.

I hope you enjoy it.

One of my favorite friends who has Rett Syndrome. I have so much joy when I am with her.

It is always a lovely day when we are together. Both of these sisters has Rett Syndrome.

Love, Karly

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True Friends

November 2, 2011 · Filed under My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged ,

My Mom took this picture of the St Croix River

I have been at a women’s Bible Study group at a church near our house for the past few weeks and I have seen some wonderful women come into our lives.  Last week when I was having a terrible day, after we got to the study and my Mom had to leave because of me, I was so embarrassed.  The women could not have been kinder.  They were very concerned, but most of all they wanted to find out how they could become better friends to us.  They have been so thoughtful ever since. I feel so glad for them in our lives.  For people who think highly of everyone and really genuinely care enough to call and send emails and listen to our story and ask great questions.  I feel like we have found people who have great hearts and listen to the heart of God by coming into someone else’s life when it would be easier to stay away.  What we have seen is that there are still lovely women and they are here, and they are blessed just like we are when we get to share some life together.  

Yesterday was a beautiful Fall day around 60 degrees.  Our friend Laurie invited me to come riding again one more time this Fall.  So yesterday afternoon, Gregg, Mom and my Uncle Wayne and Grandpa went to Bill and Laurie’s farm and I got to ride Chester.  One of my favorite things to do on this earth is ride a horse!!   My Mom took some pictures and I think the one with the sun shining down on me is my favorite because I felt like God loved me so much.  I love days that bring that kind of joy.

Love, Karly

I felt so loved by God this day

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Carbatrol is Not For Me

November 2, 2011 · Filed under Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

Much has happened these past two weeks.  I have not been able to write because my body has had a reaction to a medication we decided to try for seizures.  I have never felt good on seizure medication and for many years, over 20 at least, I had about 1 or 2 seizures each month.  But for the past two years, they have been getting stronger and more often, so we talked to my neurologist again who wanted us to try Carbatrol.  It seemed fine at first.  I felt pretty normal.  She had us start on a really small dose and increased it.  Even then I felt pretty good until about week 5.  It was the worst I have felt in many months.  

I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day.  I became so angry that I couldn’t be around people.  I was so agitated that I couldn’t sit still.  I felt like I wanted to leave my body, but I couldn’t!  I only peace I had was when I was sleeping.  I couldn’t even urinate.  It stopped that too.  I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing.  I even remember throwing myself backwards.  It has been horrible for me, my Mom and Gregg.  My Mom tried everything thinking that I was just having some bad Rett days, but then over last weekend, she did some more research on Carbatrol and found out that what was happening to me was all of the side effects of Carbatrol!!  With Rett Syndrome, all the weaknesses I already had were made so much worse by that seizure medication.  

I’m being weaned off of it now and the anti-anxiety medication the Dr gave me to overcome the side effects of Carbatrol.  I have never felt so bad on a medication in my life as I did the past two weeks.  I’m so glad to know that I was not going crazy and that my thoughts about suicide were not me, but another side effect of that drug.  I have always been open about my personal struggles with Rett Syndrome on my blog, and I hope this helps others who are wondering if their daughters are affected by the medications they are on.  My body is very sensitive and I feel overwhelmed that the alternatives to seizure medications is seizures for me.  We have tried everything we have ever been told to do to stop them without drugs, and so far, no luck.  But I am praying along with some other friends, that we will find the answers, because a life feeling like I did, is no life at all.  

Love, Karly

 

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