11 years old

I have many memories of days when I couldn’t write, before I could communicate,  before I could answer yes and no questions, not knowing if I would ever be able to do that.  Today I am writing a message to myself, a message I would have wanted to hear when I was young and had no words to share with others.  No hope that it would ever be different.  Today I can write this letter.  This is what I needed to hear.

Me at 9 years with Roxanne, one of my favorite people

My Dear Little Karly,

You see and can’t respond. You hear and cannot speak. You dream and cannot make those dreams come true.  Your hope is long gone that these things will be yours.  It is your life that is different than everyone around you.   You do not get the same treatment in school that other students get.   You hear people speaking to you like you are an infant.  You cannot respond with something suitable to that kind of disrespect.  There seems to be so little that is right for you.  It seems so hopeless right now.  Your life seems to hard to bear.  It’s not the life you would have loved to live.  There has been little to ease your worried mind.  

It will not always be this way.   You will have many things happen to you that you would not have chosen, but your life will be different than it is today.  Rett Syndrome will be discovered and there will be answers for what happened to you.  Do NOT fear your life. Do not fear what will happen.  You will be loved in ways you couldn’t have imagined.  You will be respected for what you can do, not pitied for what you are unable to do.  You will have a voice.  Your words will matter to many people.  

Remember these days long enough to write down your experiences, then let them go.  They are a heavy burden on your heart.  But other families need to know what you have lived through.  You will always have a place in this world.  Even if it looks hopeless now, your life will make a difference and you will have opportunities to contribute to this world.  

You will have joy.  You will find peace when you are outdoors.  You will discover a love of water and how much it will soothe you to spend time at the lake and watch the river boats on the St Croix.  You have always loved music and heard many songs played in your home, but what you don’t know now is that you will compose music.  You will have a voice through your music that others can hear with their ears.  You will not know how many people will be blessed by your songs.  But, most of all, you will be loved by God.  You will have a blessed life.  Not only for the things you can do, but because you are so loved by God and He will make your life worth living.  He will give you peace in the many difficult days you will have.  He will make the impossible happen.  He will bring hope to a life that seems impossible to enjoy.  Love will be the reason you are alive.  

It will be possible for you to have hope.  Don’t look at what you cannot do because that will discourage you.  Look at what you are capable of. Much will be discovered yet.  You do not need to be discouraged. For each difficult day you will have days that are incredible.  

If you focus on the spiritual side of your life you will be free.  If you focus on your body and your pain and your limitations, you will be in prison your whole life.  In the end you will know how many people have been changed by your story, so don’t be fearful to share the truth.  The truth will set you free and it will help bring understanding to a disorder that is so cruel.  

When your life is finished here on earth you will have such joy in knowing that you did everything you could to help others have hope for themselves.   

Find  joy in the little things. They are often the biggest things.  

You are loved deeply.  

~

Me on my 1 year birthday

I want to end my blog by saying, I didn’t realize how hard this would be to write, but I am glad I did it.  It’s important for me to remember, but not to focus on it too much.  I hope my experiences in my life can be helpful to other Rett families today.

Love, Karly

The WordPress.com stats helper monkeys prepared a 2011 annual report for me.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 21,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 8 sold-out performances for that many people to see it.

Click here to see the complete report.

With Steve Burk at Minnesota Teen Challenge. He was so respectful to me.

The director of Teen Challenge heard some of my story and words that were shared at our church a few weeks ago when a visiting pastor used some of my blog and story to share his message. Steve thought that my story and words would inspire the students at Teen Challenge and asked me if I could be a chapel speaker.  He gave me so much freedom to share whatever God gave to me.  He didn’t direct my words or even suggest much, so I was given a lot of freedom to listen and pray and share my story.  

I spent a few hours one day after I had prayed and wrote most of the message.  I added some more to it over the next couple of weeks.  I asked Gregg and Mom to help me make sure it was as clear as possible, but we didn’t change much of it.  Today Gregg started the talk with his inspiring words and prayer and after we played the song that I love by Matthew West called, “The Story of Your Life”, my TV interview was shown.  It’s a good way to introduce me because Maury Glover did a great job on my interview.  Then my Mom went on the stage and read my words into the microphone to about 300 people.  I sat in the front row with some dear friends who came to witness this wonderful event.  Amy and I chatted on my keyboard and I felt so close to God.  I watched how He changed hearts in that room.  

I heard the crying and the encouragement and the tears mixed with laughter.  I saw how God could use a silent young woman, unable to even care for herself, to change the hearts of people.  I give God an A for this message!!!!!  I thought it would be helpful to others, but the miracle for me was all the kindness and love and hope and encouragement that came to us afterward.  People who felt discouraged were encouraged to keep pushing and trying and believing and dreaming with God.  God knows who we are.  We are no surprise to Him.  Even our darkest thoughts are not hidden and we don’t have to worry that God would be surprised by us.  God has dreams for every person.  Those dreams are the truth, not what happens to us that causes us so much pain and disillusionment.  If I only listened to what has been thought about me because of the diagnosis of Rett Syndrome, I would not have dreamed for a bigger life.  But the one that God is working on for me is so much fuller and wiser and richer and more beautiful than anything my Mom or Gregg or I could have imagined.   The tears I heard and saw and the stories shared with us today came from the hearts of very hurt people.  Beautiful people.  People that I hope never forget the miracle that God has worked out for me by giving me a voice that others can hear through His songs and His words.  I hope I never forget how pleased I am in the this moment to be alive and working together with God to be His helper.  I feel so blessed beyond words.

My Mom, Gregg, Amy, Liz and Darren at MTC.

Love, Karly

It's a beautiful time here in Minnesota

It’s a very peaceful Christmas for our family.  I feel very eager to share this with others.  I have not been writing on my blog because I have spent my time preparing for my chapel talk next week.  I have been given 45 minutes to share whatever I am ready to share.  I am going to share two of my songs and a couple poems, but mostly I want to leave them with hope.  

I feel so much joy because my life has a purpose.  I know that everyone has a purpose but many never find theirs.  Part of my message is to be honest about my struggles.  People often see only the good parts of our lives and not the real challenges.  However for me, I can’t hide the real parts.  They are visible to everyone.  If it’s possible for me to feel a purpose, it’s possible for everyone.  I don’t have an easy life, but I have a great life.  

I never will know why people who have so few challenges live only for themselves.  I have so much joy in helping others.  I wish you peace and hope today.

Leah was home last week. She was sick while she was home, but we had a great time together. There was lots of piano music.

Love, Karly

Grandpa loved the beautiful Fall colors

It has been an amazing time for our family.  My step-grandpa moved to Minnesota in October.  He was not well.  He had many health problems and even though he wished to be strong, his body gave out.  I spent time with him in his apartment.  Occasionally we would talk.  We didn’t know each other well.  I had met him one other time in my life.  He lived in Ohio about 13 hours away, too far for someone like me to travel.

This is the first time we met last year.

He gave me a gift at the end of his life.  He was in the hospital and I knew we needed to go, so I encouraged my Mom to take me to the ICU where he was in his bed.  I told him we came to pray with him.  He opened his eyes and turned his head so I could see his smile.  It was the first time I saw real peace on his face.  He held my hand.  It was not hard for me to be there.  I don’t fear death.  I don’t fear pain because I’ve had so much of it, that I fear living for a long time.  I told him that I can’t wait to go to heaven.  Many people do not want to hear that from a young person.  They think it’s wrong to want to leave this life.  But the truth is, many of us who have lived very hard lives have seen the spiritual side of life in ways that others can’t.  I have never had this much peace.  I feel like Grandpa was loved to his last breath.

So whenever I could be there, he turned and looked at me and even had tears because he knew that I was so happy for him, that dying is not the end.  It’s a beautiful beginning.  One of our friends says that death is “The Messenger of Joy”.  I know that’s true.  It’s strange how people get afraid of death.  Like it’s the very last thing they want to happen.  I don’t feel like that.  I don’t wish to be dead before my time but I can say for sure that I will be so very happy to leave.  I will have freedom on the other side that I don’t have here.  I wrote a poem for Grandpa and I will have Mom read it at his service.  It’s a beautiful time.

Love, Karly

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

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

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

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

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