Archive for Understanding Rett Syndrome

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

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My Last Goodbye

August 20, 2012 · Filed under Composing for piano, My Faith, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

Karly Elizabeth Wahlin passed away August 20, 2012 @ 2:24p. She was surrounded by her family. She will be so missed by everyone who loved her beautiful heart and spirit.

Lois Swope-Karly’s Mom and biggest fan.

This photo was captured by our neighbor Missy last week. She titled it “Karly’s Rainbow”

When her health decline significantly in February 2012 Karly wrote:

I am writing this in the middle of the night on February 15, 2012.  I am so worn out.  My body has struggled so much this past year and I haven’t had much of a break where I have felt great.  

I can’t tell you how grateful I am for the ways God has used my life to bring understanding and hope to families affected by this terrible disorder of Rett Syndrome.  I didn’t have much hope for my life as a little girl, enduring many years of struggle before I could communicate.  But communicate I did, and to know that so many people have had their minds changed because of my story has brought great comfort to my final years.  

Much of my family have been changed too and I feel glad for their love.  Most of all, my deepest love and gratitude goes to my Mom for the life she gave to me through her devotion and continual sacrifices on my behalf.  I have shared many times with her and Gregg that the day I die will be the greatest day and that I wish for them to remember that.  I am free at last.  I am free!!!!!  I have so much joy in knowing my struggle will soon be done.  

God is my best friend, and He has given me so much comfort to have endured disability and pain.  But it’s been hard, so I hope that there will be a cure for the young girls who are coming into this world affected by Rett.  I have never forgotten the joy Gregg has brought into my life by marrying my Mom.  He has walked through many difficult times with us.  My sister Leah has had a life that for many years I thought I wanted, but I’m so glad for the friendship we have had and the ways she has loved me through it all.  

I hear my friends weeping and I only wish to say, please do not weep for me.  I am so alive now.  I have seen the other side and it’s so much more glorious than you can imagine.  I am not eloquent.  My brain is tired but my heart is content that my time spent in this world has not been in vain; that my music and words will continue to be used by God to change hearts and lives. 

I am sending you so much love.  

Karly

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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


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I Love My Garden

May 17, 2012 · Filed under Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , , ,

I am the happiest person alive! I have had the most wonderful people do something that I could never have asked for or expected. Our neighbors who are such kind women organized what has now become “Karly’s Spiritdances Garden.” Yesterday was the first time I saw it in person.

Many people have helped make my garden.

There was a lot to be done.

Spiritdances Garden in April 2012

When I went to bed on Tuesday, this is what it looked like.

While I slept on Tuesday evening, a group of people came and made my patio into a dream come true. I have always loved flowers and water and birds. Our patio now looks like something out of a movie! I felt great yesterday when I was sitting in my garden. I love the chimes, the water, the birds who are so excited to be fed. The hummingbird feeder is so fun.

When it just got finished

This is what I see when I’m sitting by our door.

I heard these chimes when I came outside the first time

I can hear hummingbirds when they come to eat

This bubbler is so calming

This made my mom cry. It’s beautiful

All these people are the ones who did the work. I can’t thank them enough

Lil Linder and her 4H group brought the plants. She owns some beautiful greenhouses.

Missy and Sandy are my friends. They don’t like to get a lot of credit or pose for pictures. I am so grateful to them.

I wanted to share this with you because I find that there is so much trouble in this world, and it always becomes news. Here’s some great news to share! People’s hearts are good. People are generous. People want to make a positive difference. People can do what they are able, and make a big change for someone else. Young people are eager to help. This world is a kind place. Maybe if we remember that, it will help us to do what we can to make it that way.

Today, I just want to show you some pictures of the beauty that has happened because people gave generously of their friendship, their money, their creativity and their energy. I will never meet many of the people who donated. I thank you from the bottom of my heart.

Love, Karly

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A New Poem

May 7, 2012 · Filed under Companion Horse, Music & Art, My Faith, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

I love writing poetry. I have been thinking about this poem for some time.  I hope it helps you like it has me.

This photo was taken last summer.

Healing

Time gives our thoughts a place in our hearts

Places that need healing from broken moments

To look for understanding,

for kind responses

It doesn’t always happen.

 

 

We look for peace and then realize

it comes from allowing other broken hearts

a different way to heal

We see there is more than one way to

look at the same moment in time.

 

 

We let our deepest thoughts be known by God

and love those in front of us

who may not feel the same way.

 

 

karly wahlin

May 7th, 2012

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Kind Hearts

April 17, 2012 · Filed under My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , , ,

I am surrounded by so much kindness.  I have always loved flowers, and my Mom and I have kept them in our yard and on our deck for most of my teen years, and now in my 20’s.  My “Spiritdances Garden” has given my heart so much joy and it’s not even planted yet!  I feel the kindness and love of people I have never even met.  

This is the 4H group who wanted to help us by doing yardwork and planting my "Spiritdances Garden."

Last week, there were over 50 people who came to our home on Tuesday and prepared a garden area and made our yard ready for summer by doing many tasks for us.  I was asleep, so when I woke in the morning, Mom and Gregg shared what took place. I sat outside this past week by the garden and my heart was so content, because to know that people are that kind and generous in giving has made my days so much sweeter.  Tonight at 6:30 there will be more people here to start the planting of shrubs and bushes!  When it gets warmer they will add flowers. 

Many people came, young and old. One of them was Lil Linder, who owns many beautiful greenhouses.

They cleaned under our plum tree. This tree was given to us by Grandpa Bob

Lil Linder

My friends and neighbors have been so supportive of me and my family over these years.  Beau has had so much great care because our neighbors bring us hay and wood shavings,  and they do Beau’s Spring and Fall vet care.  Beau’s hooves are trimmed by a farrier.  People bring meals to our home and flowers to me. No one will let us pay them!  This has been taking place for years!  They are helping us in every way.  I feel God’s love in all of it.  He is love.  I am embracing the kindness of people today that have shown that this world is a loving and beautiful place.  I am glad to see that.

I can imagine how beautiful it is going to be.

Love, Karly

 

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Friends Creating Beauty

April 4, 2012 · Filed under Poetry, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged ,

The past two months have been a story all their own.  If I am inspired, I will write about them.  For today, I have something beautiful to share with you.  I’ve always loved being outdoors.  Especially in the warm weather like we have been having.  Since we live in Minnesota and it’s cold here much of the year, I look forward so much to the nice days when I can sit outside on our patio.

I asked my Mom to plant these flowers when I was eleven, in honor of a friend who had died.

When it was built four years ago it changed our yard so much for me.  We live on a hill and it’s hard for me to be in our front yard because my wheelchair is not safe on the hill unless I am on our patio.  I have loved flowers since I was a little girl.  I am visually not able to see much, but I can see color and I can see movement from the plants as they move in the wind.  I love going to the greenhouses with my Mom and choosing plants for our pots.

Our patio doesn't have many flowers around it yet, but it will soon!

Our friends who know of my love of beautiful colors and nature, especially birds, have given our family an enormous gift.  They are planting a beautiful garden around our patio so it is a place of quiet beauty for me.  I feel fortunate beyond belief to have friends who are so generous.  Many things are being discussed.  They are doing a fund raiser to cover the costs of the plants and beautiful birdbaths and feeders.  We may even have a Pergola built over it to protect me from the sun.  Rett Syndrome makes the heat really hard on my body.  I can’t control my body temperature very well, so shade is important.

I would love to have you visit the blogpage they created to share this garden project.  If you are interested in donating for it, the information is on their blogpage.  The garden is called, “Karly’s Spiritdances Garden”.  That is a story I may tell some other time.

Here is a poem that I wrote today.

This Moment

In Spring life becomes new again

It brings forth its’ song in the birds who return

bringing their enthusiasm to our ears

 

 

Creating shelter for their families yet to be born

their hopeful hearts driving their frenzied pace,

protecting,

busily nourishing their young

who will live past them,

doing the same

 

 

Plants that slept quietly underground through the long,

hard, cold months

emerge,

to remind us that life continues,

that we have today to enjoy

 

 

See the beauty

recall the memories

listen to the songs

they will live past each of us to continue on

and on…..

 

Much Love,

Karly

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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

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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

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A Very Peaceful Christmas

December 24, 2011 · Filed under Music & Art, My Faith, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

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

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