Archive for Disability Awareness

The Invitation

August 20, 2012 · Filed under Companion Horse, Disability Awareness, My Faith, Photos, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs

Karly’s precious little hands. She was so determined to share her thoughts with us, then eventually the world after we found a way for her to communicate at age 10.

As Karly’s health declined, she asked me to post this poem she wrote, after she passed. Her beautiful heart and spirit continued to guide us right to the end of her days. She leaves behind an enormous hole in our hearts and lives.

Lois Swope-Karly’s Mom

The Invitation

 

The music of heaven fills my heart with longings I cannot ignore

The time spent on earth full of its possibilities, 

becomes a distant memory

compared to what I see through weary eyes

 

I leave my love behind to offer as a beacon 

for those who wonder if it’s true,

I have seen, I have heard, I am certain

 

It’s a small step for me now on this path

I hear the tears of many who have loved me so well.

Love another like you loved me, 

and this world will be a better place.

 

I see the face of God

I see my new beginning and I am full of joy

I will watch for you, please come.

 

 Karly Wahlin

February 17, 2012

Karly and her Beau 2011

Comments (17) »

A Poem

July 13, 2012 · Filed under Companion Horse, Disability Awareness, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome, Writing, Writing Memoirs

My Spiritdances Garden

 

A Very Personal Story

 

Perspective

 

Looking back…

I have memories of times

I heard birds singing their songs,

of children, running, laughing freely

 

I recall times with Beau

who stood so quietly at my side

careful not to nudge me too hard,

hugging my wheelchair with his head

soothed by his presence

 

Flowers, planted so carefully

by people I have never met

and friends who love so well

surround me with beauty

in solitude I find peace in this garden,

my Spiritdances Garden

 

I remember days when my body

was so peaceful

it reflected the stillness of my spirt

I hear the music that lifted my heart

and gave me hope

 

I find perspective

I find purpose in my struggle

I don’t give in to grief over a body that has limited me,

even now, when my struggle feels too much to bear

and my body betrays my hearts cry for comfort

 

On days that I struggle to find peace, I remember these things

 

 

 

Karly

July 13, 2012

My Beau


Comments (3) »

A Letter to Myself

January 18, 2012 · Filed under Caregiver, Composing for piano, Disability Awareness, My Faith, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

I have been taking time to relax this week because I have been sick. I feel better and I am eager to share something today.  In times when I am quiet, I think of things to write about.  Today I feel up for writing.  

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

Comments (13) »

Pure Joy

December 29, 2011 · Filed under Disability Awareness, My Faith, piano compositions, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , , ,

This morning I watched God work out a miracle.  I will do my best to share some of it here.  I have talked about how amazing it is to have a voice that others can hear through my music, poetry and written words.  God worked it all together this morning into something so beautiful that it made grown men and women cry.  I wasn’t expecting my heart to feel so full of joy but it feels so full I could run around and sing!!  Since I can’t do that in my body I will try and do it with my words.  

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

Comments (8) »

Until We Meet Again/Saying Goodbye to Grandpa

December 2, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

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

Comments (5) »

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

Comments (5) »

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

Comments (1) »

Seeing my Friend Susan Norwell

October 19, 2011 · Filed under Disability Awareness, Facilitated Communication, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

I was so happy to see Susan Norwell last week.  I heard from her about a new communication device that she thinks I should try.  I want to be able to have more freedom to communicate with everyone I meet.

Susan Norwell believes in me and others who struggle to communicate. She is my hero and I am so glad she came!

I am going to try the Tango to see if it will help me visit easier with people. And in my study group to respond in my own voice.

I would tell them many things if I could:

“I’m aware of your presence.”

“I hear everything you say, even when you whisper.”

“I see how you look at me.”

“You assume something about me that is not true.”

“I have a dream, do you want to know what it is?”

“You see a disabled person, I see a person who is afraid of what they could become.”

“You see a person holding their breath, I’m just trying to breath.”

“You see a person chewing on her bandana, and assume a lack of intelligence. I see that I’m helping my body calm down because it does things I can’t control. This helps me.”

I would like to help the world have more compassion.  It’s hard for those of us born with bodies that cause us so much trouble.  It’s not something we chose.  I feel compassion for those who get old and have limitations in their bodies that they cannot control.  My step-grandpa is here with us because he wants to live with family nearby and I have never really spent time with him because he lived so far away.  Now I am getting to see him as a frail, older man who has questions about who I am.  I feel glad that we can help him. But it’s hard to know that at one time, he was able to care for himself and taught many people in school and in his church, and now feels like his life is so much less because he cannot do that anymore.  I want to help him and others who see that their lives have changed so much.  I want them to know that while we are alive we have purpose and we have opportunities that only we can do. It’s not good to lose that understanding, because we all need each other!  We all need to have compassion and hope for a better world.  It starts with us giving our hearts a job to do: to see others and to see the little things we can do.

I hate it when I hear others think that the small kindnesses that we can show, don’t matter.   That unless it’s big and in front of a group, or is impressive to someone, that it doesn’t matter.  It’s not true!! It’s not true that our love and care for someone today, goes unnoticed.  I have seen how thoughtful acts, help open hearts of someone who’s locked up inside their body.  It’s important to help and hope and give.  And that’s sorely lacking sometimes.

I hope when you meet someone today, you see with your heart, that has compassion and sees how much you can do to bring light to someones heart.

Love, Karly

Comments (3) »

A Very Personal Story!

October 7, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome, Writing · Tagged , , ,

After Jeff shared his message last Sunday at Woodland Hills Church

It has been a perfect week.  I have had so many great things happen to me.! Last Sunday Pastor Jeff Lexvold shared his message at our church that he titled, Lessons From Karly.  My feelings about it were: honored, overwhelmed, grateful, embarrassed and miraculous.  I didn’t want to be in the audience and noticed, so we sat on the side, but the people who talked with us were so kind and encouraged me by saying that my story changed their lives.  Jeff has been a great new friend.  He has told us that he will be sharing a message at Sonshine Festival that includes my story next July.

It’s amazing what has happened in my life!!  I never even hoped that my story and life would have this much impact on others.  I hoped that I could help other Rett girls and their families, but I never imagined that average people could be changed by my story and our families very personal challenges.  But I guess what has happened, is that God is able to use the most ordinary lives to help others.   There are 20,000 people or more at Sonshine Festival, so to imagine my story helping others feel more joy in their own lives, brings me such contentment.

I was on the Let's Go Fishing boat yesterday and invited my friend Claudia. It's been so great to have a boat I can go on the St Croix River with. I loved every minute!

It was a perfect day!

Many people go on these boats to enjoy the St Croix River.

I hope that you never give up!!  That you don’t wish for someone else’s life.  That you are honest about your own story, because I have found that God uses our struggles to bring light to others.  I sit here today struggling with breath holding and hyperventilation and I wish that would go away.  But in this I do not worry, because what I am experiencing is the same as thousands of others who live with this disorder and I feel connected to them.  I hope my story doesn’t seem impossible to you.  Because if I were to dream a dream that included some of the things that have happened in my life, it would be a fiction, but God made it into a non-fiction.  I love the verse “Delight yourself in the Lord, and He will give you the desires of your heart”.  I know that God turned my nightmare into a dream and for that I am so grateful!!

Here’s the message Jeff titled: Lessons From Karly

Love, Karly

Comments (2) »

Great Hope

September 29, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome · Tagged

Something amazing happened to me and my family last weekend.  I was so surprised when I got a response on my blog from a pastor I have never met, but who knew quite a bit about me!  He saw my story when it was aired on TV last Spring and he has some of my music on his Ipod.  He’s going to be preaching this weekend at our church and asked if he could use some of my blog for his sermon illustration.  He was so enthusiastic because something amazing happened for him and he felt like God lead him to me. This is what Jeff Lexvold shared with us when he came to meet me and my family on Saturday.

This is the Bible verse for his message:

I Thessalonians 5:16- 17 “Be joyful always: pray continually: give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”  Jeff listens to piano music while he is praying. He has many other pianists on his Ipod and a few of my songs! He asked God to bring someone to his mind that lives with great challenges and yet finds joy in living because of their faith and hope in God.  He was driving down the road asking for God’s help when one of my songs came on his Ipod, and he felt so strongly that my story was the inspiration he needed for his sermon.  He leads youth mission trips and uses my TV interview to teach compassion and understanding for his trips into areas where the students will meet many people who are not like them.  He uses my story to demonstrate that people are more than what they appear to be.  I was so grateful that God lead him to me because I had never even heard of Jeff before, and he has been so inspired by my blog.  It gives me courage to continue sharing. I listened to what he was planning on sharing and I told him I was pleased with his message.

It is hard for to be visible because of my greatest challenges in life.  Most people who live without a disorder that others can see, rarely experience what those of us with physical and visible disabilities live with daily.  We are noticed for what we cannot do. Not for our great accomplishments, not for our compassionate hearts, or for the beautiful smile on our faces.  Part of Rett Syndrome even affects our ability to demonstrate how we are feeling because Apraxia sometimes even blocks my ability to smile when I am happy!  It takes a beautiful person to recognize there is so much more than what we can see on the outside of a person. I feel so much gratitude today because Jeff took a risk and asked for my permission to share the hard parts of my life.

He shared something else with us that seemed so enormous that only God could have made it happen.  I don’t want to say anything yet about the details but I wanted to say that Jeff bought two of my CD’s and one of them is going to the band that many people know about, called the Newsboys!  Jeff is the coordinator of Sonshine Festival, a very large event that happens every summer in our state for people who love Christian music.  God is so loving and I feel it today especially.  I wanted to share this now because I have been so grateful this week.

I know what it is to struggle so much in this life.  But I also know God’s love and direction in my life and I know it’s real.

Us with Maury Glover during our TV Interview

Maury Glover the day he interviewed us for 4 hours.

Tim was our cameraman

I have had opportunities in my life that many can hardly imagine. Opportunities, that for a young woman with Rett Syndrome can only be by God’s planning. Most people hear the word Rett Syndrome and their minds close and their eyes look with pity, because they assume I have so little to offer.  I have been a keynote speaker at conferences and annual meetings, at schools and a chapel speaker at week long camps. My music has been recorded in a professional studio.  I have people seeking my guidance for many challenges related to Rett Syndrome.  I am a writer, a poet and I have been on TV many times.  I don’t say any of this to brag.  I feel so fortunate!  I read these words and feel like I am part of a miracle!!  We have not tried to create a life for me that is visible in our community, but it has happened!  My Mom and Gregg have not made me visible.  My words have made me visible.  My story has given people insights into Rett Syndrome and only I can tell that story.  My parents have their own story to tell, but I am the only one who can offer what it is like to be me.  My Mom has done so little to make any of these things happen!  What I mean by that, is these things have been offered to us.  People call us for interviews and speaking engagements and research projects.  We haven’t done any of it.  It’s what God has given me to do with my life, and I say YES when I know it’s right.  My family always has me make the decision about whether I feel it is the right thing to do.

Today I feel so much gratitude.  I sit here in the hospital with Mom trying to get my new wheelchair ready for me.  We started getting my new chair in May of 2010.  Today is the first time I sat in it!!  It will be a while before it is done.  We have been here in the hospital since 8:30 this morning and hope to leave by 3.  It is one of hundreds of appointments we spend our time doing, but I can say this, I have said so many prayers during the times we have waited and driven somewhere.  I try to pray for everyone I meet.  I feel it’s the best thing I can offer.  I send up prayers today for my Rett friends who need so much support in order to live.

Love, Karly

Comments (2) »

« Previous entries
Next Page »