Archive for Writing

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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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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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

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Dog Days Poetry Reading

August 24, 2011 · Filed under Disability Awareness, Music & Art, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing

Our friend Sandy took some great pictures. This is ArtReach St Croix where our Mulberry Poets meet each week.

I have had trouble with Rett Syndrome lately.  I have felt so hyper and so much anxiety for about 10 days then I had some seizures this weekend.  I think it was becasue I have not been able to swallow easily for over 2 weeks.  We have found if I drink 120 ounces everyday that i usually don’t have seizures.  I still can’t swallow easy so it’s been hard.  

My step-grandpa is in the hospital very ill and my grandma ended up going into a nursing home near us to get stronger.  She wants to go back home.  So there have been many struggles in our lives. I haven’t felt like writing much.

But something wonderful happened last night!  I went to bed but my Mom went to the Dog Days Poetry Reading.  It included my Mulberry Poet friends and there were about 35 people who came.  I submitted 3 poems.  My Mom read my introduction of myself and 2 of my poems and John read the third one.  I love how his voice sounds when he reads.  It was a hot summer night and some of our friends came too.  I am honored by that and I hope that a few more people learned about Rett Syndrome and most of all that a few more people had their hearts opened to those of us who live without a voice that they can hear. 

My Mom read my words and was my voice

My Mom said there were many talented writers

Corrine is in my group. I love her humor!

Here’s is what was shared with them last night. 

1. My introduction

Dog Days Poetry Reading

August 23rd, 2011

I am not here tonight because I am home in bed. 🙂

I have asked my mom to share this message with you, and she and John will read the three poems I have submitted for tonights reading.  I live with Rett Syndrome a rare disorder that primarily affects females and causes us many challenges in our bodies.  I am not able to walk independently or care for my own needs.  I have spoken one word in my life. I have many challenges that made others believe for most of my school years that I was profoundly mentally impaired.  I was introduced to a keyboard by a woman who believed in people like me who were non-verbal when I was ten years old.  That was the first time that I could share my needs and thoughts.  I had taught myself to read by following the letters closely as my parents read to me and my sister everyday while I sat on their lap.  By the time I was given a keyboard I knew how to spell words.

Throughout my childhood I was surrounded by books and music and I found my voice through my music and my typed messages.  I have composed music for sixteen years and I have many things yet to write.  I have found a love of poetry and though I am just beginning to learn how to write that well, I love being able to share my thoughts in a few words well chosen.  I hope when you meet someone who is non-verbal you assume they have intelligence because the experts might be wrong about them.

My first poem:

I wrote this poem on the last day of a very wonderful trip with my parents and a caregiver in an RV.  It was the first long road trip I had ever taken.  I remember many things about that trip but the most precious to me, is that we did it!

It was a trip that holds a lot of memories.  My wish is to have more trips, but for now, I hold these memories close to my heart. 

 My Impossible Yes!

I sit in the shadows of the Black-hills and all their beauty

I am in awe!

For me to travel has been a great feat

I am not alone here 

You see, I depend on the legs and backs of many people to enjoy this magnificent place

If I were able, I would drive through the hills, and feed the curious burros that came to greet me 

I would take pictures of buffalo as they wandered the hills in herds

I would run up and down the hills, shouting with joy!

I would sit quietly watching the wild horses who live in as much freedom as they are able, 

Their family bonds offering safety and comfort

I carry these memories in my heart

Thanks to my family I have done the impossible!

YES!

My second poem:

This poem came to me because of all the ways we are judged and judge others.  Our inability to really see into people’s minds and hearts, keep many of us living lives apart from others. 

 Thoughts In My Head

 Talk is cheap they say

It comes so easily off the tongue

It rolls around mouths and exits into people’s ears

forming thoughts in the listening heart

Talk is cheap for those who never think twice 

about making sounds that form words

Words that form other people’s opinions

But for those of us who have no words others can hear

their thoughts are formed by our appearance

by the lack of words,

never seeing beyond the visible 

to hear the hearts who live in silence,

who live in bodies that betray their intellect

I say talk is cheap but thoughts are expensive 

Thoughts formed without questions hurt many

John read my poem A Resting Place. He has published a book of poems

My third poem read by John:

This poem came to me while we were in a beautiful cabin during a rainy day on the North Shore.  I felt so peaceful there and I want to have that feeling stay in my mind.  This is not easy to do somedays, but I find a place inside me that holds the memories of that day, and I feel peace all over again.

A Resting Place

People get busy

They overlook, overwork, get weary

keep going…and going

They ignore signs of hope

the call to rest

leaving behind and getting away seems impossible

like there’s obligations bigger than they

It’s a call often ignored

but the North Shore restores mind and soul

It gives a break from life as we know it, 

providing comfort in its solitude.

Thank you Lake Superior for helping us slow down

to see

hear

look 

explore what is lovely inside each of us 

Together we love

apart we long for peace and harmony

Love, Karly


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Communication is For Everyone

August 3, 2011 · Filed under Caregiver, Disability Awareness, Facilitated Communication, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing

This is the second time Amy and Elizabeth have ever facilitated together. It worked great!

Communication is one of the things I never stop thinking about.  Yesterday Elizabeth came again and we had another wonderful time together.  I asked her caregiver to assist my typing again and it worked great again.  It worked well for Amy and Elizabeth too.  I wanted to share this because people have been asking me again about how I learned to type and communicate my thoughts.  It is something I have written about in How I Communicate.  You can find it at the top of my blog.

This is the second time Kristen and I had ever facilitated together. I love doing that with new people.

When Elizabeth went home, Amy, Mom and I decided to write some more about the details of learning to facilitate typing with me.  It was amazing how much information we had when we talked about it together.  I wrote a lot of it and they added their information.  We are planning on using it to teach my caregivers and friends how to  assist me in communicating better.   

We want to have more people use my keyboard.  It will help me so much and give my Mom a break.  I know after having Kristen be able to do it really easily that it’s not impossible for others to learn it.  But it’s been hard to describe how to do it.  I think the information will help a lot.  We will be making a video too.

This is a poem I wrote today for my Mulberry Poets Group that meets on Thursdays.  

 Thoughts In My Head

Talk is cheap they say

It comes so easily off the tongue

It rolls around mouths and exits into people’s ears

forming thoughts in the listening heart

 

Talk is cheap for those who never think twice 

about making sounds that form words

Words that form other people’s opinions

 

But for those of us who have no words others can hear,

their thoughts are formed by our appearance

by our lack of words

never seeing beyond the visible 

to hear the hearts who live in silence

who live in bodies that betray their intellect

 

I say talk is cheap, but thoughts are expensive 

Thoughts formed without questions hurt many.

 

Karly Wahlin

August 3, 2011

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Happy Heart

July 10, 2011 · Filed under Caregiver, Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

Our friend Amy and I had so much fun with Kristin and Elizabeth.

Elizabeth can type with Kristin so we can visit easily.

This past week my friend Elizabeth came to visit me and we did something really fun together.  I love to see her and we always enjoy talking together.  She is going to be 30 this summer and she also has Rett Syndrome.  She types with a keyboard too.  It’s like having a friend who knows everything about you.  That’s what we feel about each other.  There is a group of people who give boat rides and fishing opportunities to the elderly and people with disabilities and they have a pontoon in the river near our home.  Elizabeth fished too.  We finished with a picnic.  It makes me so happy to be around another woman with Rett Syndrome who is able to communicate with me.  Sometimes we can do it easily and other times we really struggle to type, but this week we just had fun together.

Our captain was so fun. He joked a lot.

Elizabeth loved to fish!I wanted to share this because I know many of us with Rett Syndrome suffer and struggle.  It’s not a life we would have chosen.  But to know that there are others who understand us brings peace to my heart.  We went to church last night and I felt like there was something very important that happened.  Our pastor was sharing a very sad memory from his childhood and how that memory and those experiences still affect him today.  It was sad. It was real.  He was talking about what he does with God to help heal some very painful experiences in his life.  It made me see how God has helped me accept a life that no one would choose. It’s a life full of challenges that most would not imagine; with dependence on others who rarely stay in your life as a friend,  who can leave because it’s best for them.  Who have goals and dreams that you don’t fit into.  A life filled with physical pain and suffering at times.  A life that requires so much patience.  A life that is lonely.  

But I sit here with a smile on my face and great joy in my heart because my eyes can see how much better off I am than I would be if I never had this disability.  I don’t feel like I have an impossible life. I have seen things that many others can’t.  I have experienced joy that is not from this world.  I see God working in people in ways they can’t understand.  I don’t worry about Rett Syndrome.  It hasn’t stopped me from being loved by God.  God has given me so much peace to endure this life.  I know that even if I have no abilities in my lifetime that others have, that my life mattered while I was here. Because God showed me that even if I struggle, He can use my life and my story to open people’s minds and their hearts to girls with Rett Syndrome.  We are not the limited people we appear to be.  Our hearts are held by God and that is the part of us that really matters.  

So even if everything else seems to be wrong with our physical bodies, I am confident of all the girls I have met with Rett Syndrome, that our hearts are open to God.  I have so much joy because my hope isn’t in a cure.  My hope is not in a life that is easy. My hope is in my heart. It is from God. So to me, Rett Syndrome is God’s gift because He made it become a blessing.  I believe that with all my heart today.  I feel so glad for my Mom and Gregg who live with me everyday and go through many hard things with me. They believe in me always. 

A memory I love from camp two years ago. We talked of spiritual things and loved every minute together.

I send you great joy and hope.

Love, Karly

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On the North Shore

June 24, 2011 · Filed under Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

Outside our cabin

The cabin was perfect to make great food in

I love being able to visit with my keyboard. I can do that easily with Mom and Amy

I feel so glad for my Mom

I love Leah’s cuddles

We had a lot of fires. They are so calming to me.

I couldn’t get close to the water because I can’t walk on the rocks, but I could hear the waves from our cabin.

I am sitting on our patio this morning in the sun, at home.  We got home yesterday from our trip. Leah came home from Ohio and our good friend Amy, who is like a sister to me,  went together with our Mom to a beautiful cabin.  I feel so glad for it.  I was so calm the whole week we were there.  I slept a lot.  I didn’t hyperventilate hardly at all.  I felt relaxed.  I was so relaxed I didn’t feel like writing.  I am sorry Leah had to go home so soon.  Her life is busy and I miss her.  But I loved seeing her so much this week. It was raining the whole time, so we didn’t go to the Gooseberry Falls, but it didn’t matter because we were in a beautiful place, with a fire and each other.  

I loved being here with Leah

I have a poem that came to me while we were there.  I titled it: 

A Resting Place

People get busy

They overlook, overwork, get weary

keep going…and going

They ignore, signs of hope

the call to rest

leaving behind and getting away seems impossible

like theres obligations bigger than they

It’s a call often ignored

but the North Shore restores mind and soul

It gives a break from life as we know it, 

providing comfort in its solitude.

Thank you Lake Superior for helping us slow down

to see

hear

look 

explore what is lovely, inside each of us 

Together we love

apart we long for peace and harmony

Love, Karly 

Lake Superior looked like the ocean!

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Poem For The World

May 2, 2011 · Filed under Companion Horse, Disability Awareness, My Faith, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

This always makes us smile.

I have become interested again in writing poetry because I am part of a poetry group of adults who are not disabled.  We are called Mulberry Poets. I have felt welcomed and valued there and I feel so glad for that.  I know how hard it is for people who have disabilities to be noticed for who they are and not what they have.  For today, I want to send some hope into our world and I think this poem was inspired for that reason.

To Change the World

 It doesn’t take much talent to bring joy

It doesn’t take much joy to change hearts

It doesn’t take much effort to change someones day

It doesn’t take, but gives

to offer a smile

a hand

a kind word

to notice someone who needs a hug

It doesn’t take much to hear the birds song

the flower blooming

the children laughing.

 It doesn’t take much to pet a dog

to offer a cup of tea

to listen to someone’s story

It doesn’t take much to change someone’s day

It only takes our willing hearts and awareness to respond

 Look, see, hear, feel

It’s all we have to do in this moment,

and the next

and the next…..

Karly

May 2, 2011

I feel content with Beau

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Easter Blessing

April 22, 2011 · Filed under CD production, Composing for piano, Music & Art, My Faith, Photos, piano compositions, Poetry, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged

Easter Blessing

The hope in every heart is peace
giving freedom to dreams

Inspiration freely given to those who see
To those who have listening hearts

We are not alone here, living lives without purpose
in homes without contentment
living in quiet solitude

rather,
look
hear
embrace
love
extend hope

We are not alone
We are part of the divine.

Karly

April 22, 2011

I want to share my song: When I Get To See You:    08 Track 08


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In Peace

March 31, 2011 · Filed under Disability Awareness, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing

I have had a great week because I am hearing from others that my story in the Women’s Press has helped them see. I hope that there are changes happening in people’s hearts.

I feel so fortunate to have people around me who encourage me and believe in me.  It’s not possible to have a voice if we are living in silent bodies and no one believes that we are just stuck in here.  I have had help everyday of my life and will continue to need that while I am here on earth.  But if I don’t have opportunities to be with typical people I feel like I won’t have a way to help change people’s hearts and minds towards those of us who are non-verbal.

I’m excited because I have been invited to join a poetry writing group that meets in our town each week.  They call themselves the Mulberry Poetry group.  I am excited because it is a group of typical adults.  This will be my first time in a writing group for everyone, not just for people who have a disability.  I feel very excited about that.  I asked Mary, who is leading the group, if she would read my story from the Women’s Press today, so when I come next week, it will not be a surprise to them.  I get nervous sometimes in groups who don’t understand me, but I feel ready today to share my poems with a new a group of friends.

I feel peace and I am feeling fortunate today.

I send peace to all my Rett friends.

Sunrise from my room in the morning.

Love, Karly

 

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