Archive for Rett Syndrome Intelligence

The Invitation

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

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

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

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

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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My Talk at Teen Challenge

I hope you are helped by this chapel talk that I did with my Mom reading it, and Gregg helping with leading and prayer.

Steve Burke (Teen Challenge Director of Education) and me after my talk

Karly Wahlin

December 29, 2011

When I was asked if I could share a message today, I started praying, then I asked God for a message that would find a home in your hearts.  I do not stand up here because I cannot stand without a stander.  I do not speak into the microphone because I have no voice that you can hear with your ears.  I am not on stage because I cannot see far with my eyes.  I am not in front of you because it is hard for me to be visible because of movements I cannot control.  I asked God for something that would be worth your time to share, because empty words are foolish.

About three months ago a pastor named Jeff Lexvold sent me an email asking if he could use my story and my music for a sermon he was preparing.  I have a blog and he had read some of it and was very inspired by my story and noticed how much I write about joy and hope in spite of a very challenging life.  He asked if he come to our home to meet me and my parents, so we did that.  I felt so comfortable with him and respected the way he was going to share his message using some of my words.  He titled his sermon “Lessons From Karly”.  He shared it at our church in front of thousands of people.  Many more people listened to the podcast of that message.  I felt a little awkward, but fortunate that God could use my story to help other people.  What I didn’t understand was how difficult that next month would be.  I became so irritable with high anxiety, overwhelmed by life and had thoughts of death. I couldn’t drink, I couldn’t suck on my cup. I felt crazy!!  And on top of that, I felt embarrassed that my life had been lifted up as an example of joy.  I felt very overwhelmed.  What we didn’t know at the time  was that I was feeling that way because of a new medication I was given to manage my seizures. It was a terrible time for me and my family and I felt like I could never feel better again.  I prayed and it felt like God had fallen asleep on me!!  I asked for help and I couldn’t find it!  The good news is that once I stopped the medication I started to feel better after about ten days, but what I experienced during that time was very dark.  I imagine that some of you have felt those feelings…. I described that medication as “the devil in a bottle”!!!

Sometimes I feel like my life has become a burden to others.  My care is very consuming for my family.  I have many caregivers, many that are very great friends and some that have been with me for years.  But I cannot go one hour without needing something from a caregiver or family member.  It’s a life I would not have chosen for myself, but it’s the life I have been given, and I feel so glad for it, because this life is not just about me!! I don’t believe that God created my disorder. I believe that it’s something that happens to humans for reasons we do not understand, but the thing I want to have you know is, I HAVE A GREAT LIFE BECAUSE MY LIFE IS NOT DEPENDENT ON EASY DAYS OR HOURS, BUT ON MY RELATIONSHIP WITH MY GOD.

I’ve had many hard days. It has not been easy.  I asked God for a reason to live, for a reason to struggle. He gave me my story. One filled with mystery, questions, trouble, hope and most of all, great love.  I’m not living today because of my will, but because of God’s grace to me.  He has made my life visible.  

If you would have known me three years ago you would know how much has changed for me.  I had graduated from high school with no place to go.  The classes offered to me in school were a joke!  They focused on things I will never be able to do.  It was all tasks, not intellect, so I was very discouraged.  I wanted to have more to do.  I had never written or done public speaking.  I couldn’t say a word. I never have!!!   I didn’t think I had much to say but a neighbor and great friend, asked me if she could set up a blogpage for me and encouraged me to share. I didn’t know what a blog was!  I had never heard of it, neither had my Mom!!  But, we learned and now I am writing often.  I’ve had over 82,000 people visit my blog from all over the world!!  Drs, teachers, therapists, researchers and parents. People leave me messages from the Philippines, Korea, France, the Ukraine, England, Egypt, Istanbul Turkey, Australia.  Places I will never go. My blog has been translated by others into many  languages. God has brought my words to them and given them hope.  I was not expected to offer anything of significance to this world.  I was just going to require care my whole life…..but God had another plan!

I want to have you remember something: no matter how difficult our life is, no matter how low we feel, God is with us and only He can lift us up.  He’s our one true friend. Our friend who knows our hurts, our limitations, our failures, our terrible thoughts and loves us anyway.  LOVES US!!!  I feel that in my bones, I NEVER doubt it.  I pray everyday for vision, for that moment.  I share everything with God.  He doesn’t have a hard time understanding me. He gives my heart wings.

There are times in my life when I find that I don’t want to go on but then I see how much God has worked through me and how much we can do together, and I feel like my biggest gift back to God is to be His helper.  I don’t have much that I can do physically, but I can write and I can pray and I can encourage; And I do that every day that I am able.

There will always be trouble in our lives. It’s not perfect here on earth. We cannot expect to have only trouble free days.  It’s how we live in those hard times that matter.  I have found the hardest days for me are the ones where I only focus on what’s right in front of me and I don’t think about the bigger picture of my life.  If I only see the struggle, I will be defeated. But if I step back and ask God to give me a vision of my life from His perspective, I see how He has been there for me through everything.  I have NEVER been alone!!  I do not see that if I am focusing on myself.

I have never had an addiction.  I don’t know what you struggle with everyday, but I know what it’s like to have my body need to do something desperately, that causes me harm.  I drum on surfaces with my left hand. Even if I get slivers in my fingers, my compulsion to drum still happens.  I can’t stop it.  If I try really hard I feel very overwhelmed.  Maybe that’s something like an addiction where your body craves something that if you give in, causes harm.

God has given each of us something to do no matter what our circumstances are.  It’s not our limitations that stop us because God is bigger than our limitations.  God is bigger than our worst struggles.  He is bigger than any discouragement we might feel.  We will have challenges and many of them may seem overwhelming to us.  But God has proven to me that my challenges are Not a barrier for Him.  I have the blessing of having people around me to remind me of that when I get discouraged by my struggles.  Without encouragement from the right people our hearts become heavy, because life can be hard.  It’s important to know that God is near.  He is NOT far away watching us fail.  He is close and wants to lift us up.  Do not ignore the voice of a friend who knows God, who God has brought into your life to bring hope and healing.  There is much to discourage us,…..but God is an encourager.  He encourages our hearts.  He encourages us to look around to see how we can bless someone else.  The encouragement of a friend is NOT something to ignore.  God brought them to you!

I want to share a poem with you that I wrote for my friends at our Bible Study Group.  They have been the best encouragers.  They come to our home with food.  When my Grandpa was dying, they prayed with us.  They check in to see how they can help.  We have fun together.  We talk of spiritual questions.  We don’t ignore real concerns in each others lives.

When Time Stood Still

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.  

Karly Wahlin 

November 2011

I would like to play  my song, “When I Get to See You“. It brings me back to a time in my life that helps me remember, I am not alone.

I hope you find the truth that God put in your heart, to remind you of how He formed you.   How He designed you is unique.  It is not His purpose that you are like everyone else!  I am one of the few women in the world with Rett Syndrome who can communicate.  My ability to type was always wonderful to our family, but not as much to others.  For the first ten years of my life I had no way to communicate.  I couldn’t control my hands, I couldn’t speak, I couldn’t walk, I couldn’t point, my eyes couldn’t see well so I couldn’t stare at things like other girls with Rett do to communicate, so I was stuck inside my body!!!  I felt so oppressed I wanted to die.  I saw no reason to stay alive.  I was little!!!  I was a little girl and I felt that way!  I didn’t have hope that it would ever change.  But my Mom believed in me.

My sister and I would read books everyday with my parents.  What they didn’t know at that time was that I was watching the letters as they read and I figured out how to spell by making the words out as I followed along.  My sister and I were surrounded by books and music, so I was learning. I was intelligent and capable in my mind with no way to let others know.  Even as I got older and demonstrated that I could type, many teachers and professionals said it wasn’t possible for someone with Rett Syndrome to type.  They had made up their minds at that time that girls with Rett Syndrome were not very intelligent, that we lost our intellect along with our other abilities.  That was NOT true!

I know that God gave me this ability to communicate for a reason and as I got older and now have a blogpage that people come to read from all over the world, I hear how hopeful they are for their own daughters who have Rett Syndrome: how much my story has given them encouragement to believe in the intelligence of their girls, and not to believe every professional who tells them that girls with Rett Syndrome are not able people.  They look at my story and my life and tell me how I have blessed them by being honest about my journey.  When I first started writing I had no idea that my life would have any impact at all in this world!!  But now I have researchers and teachers and families and Drs coming to me and asking questions about Rett Syndrome.

It was not clear at the beginning how God would use my life to help anyone else other than provide a paycheck for them.  What He has done through my music and my ability to type is a miracle!  It is a MIRACLE!!  I know you look at your life as very limited right now.  I understand that, but you have a voice and you have a heartbeat and your life WILL be better.  It will not always be a struggle to survive.  On the days I feel great, I am full of joy. I try to remember everything about those days. It helps to remind me when I feel discouraged about who I am and to remember who God created me to be.

I wrote a poem a couple years ago that I recalled recently when I was really struggling.  I asked my Mom to read it out loud to me to remind me of the strength I felt at the time I wrote it.

I am The Flower

I am the flower coming into bloom

I am a tree planted on a hill

I stand in spite of storms,

strong and free

I am a fire

Warming the hearts and souls of many

I give comfort in a world of cold stares

Karly Wahlin

November 16, 2009 

I have found in my life that if I am willing to do the small things that God asks of me, that sometimes those little things can become big.  Not because I made them big, but because God knew He could trust me with the small things and then gave me more.  It is never about my ability, because if God only looked at what I am told I can do by my diagnosis, He would not expect anything from me.  I am where I am today because God trusted me and I said “YES”, even if I was scared, even if I was terrified, even if it sounded impossible for me to do.  I said “yes” because I knew He would make it possible.  I’m not here to say that it was easy. I have really struggled because of my health weaknesses.  But I am here to say that God made the impossible happen.  He made a young girl who was not expected to do anything but wring her hands and chew on objects, and was given goals for many years in a row while she was in school, to sort shapes and match colors, and when she couldn’t even do that, was labeled “profoundly mentally impaired.”  God took that. He took what was stolen from me through Rett Syndrome, and He gave me a life that only He could have created.  I hope you remember my story when your day seems too hard and you remember most of all what God can do.  He can make a dream come true that you didn’t even think was possible! 

In the middle of a very hard time it’s hard to see where we are to go.  But if God is guiding us we will end up in the place He wants us to be.  Our paths on earth will not be easy.  Mine have been very hard to bear sometimes, but when I know that God’s Holy Spirit is the one in charge, it makes the hard days easier.  Sometimes we have made choices that cause the hard times. Other times things have happened to us that we had no say over.  But if God is in charge, we will be ok, no matter how the hard times happened!  If it’s because of our genetics, He is bigger than that! He can make something beautiful out of a big mess.  He doesn’t need perfect people.  He doesn’t need people who have always made great choices, or people who had perfect families.  We don’t need to give up, we just need to trust God and allow the Holy Spirit to make something beautiful out of our messes.  I hope when you remember my story, you remember that God has done something mighty in my life.  I am an unlikely guest speaker, but God found a way. 🙂  Nothing is too hard for Him 🙂   Without my Mom and Gregg this would not have happened. They are the people that God has used to help His word get out and I am so unlimited because of what God has done through the three of us:)

I want to end by saying: I hope you don’t give up. That you remember, you are more than your current challenges.  God has a purpose for your life that will strengthen you and give you meaning and give your struggles perspective.  He has used my hardest days to encourage others and I am so glad for that.

End

Play: “Ever After-Reprise” during meditation 

Love, Karly

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Kind Hearts

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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