Archive for Poetry

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 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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My Talk at Teen Challenge

April 27, 2012 · Filed under Composing for piano, My Faith, piano compositions, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized · Tagged , , , ,

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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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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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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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

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My St Croix River

September 9, 2011 · Filed under Disability Awareness, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged ,

I sat next to this pot as I write this morning

I want to start by saying it’s been so long since I have felt good that having a great morning feels like heaven!! I was so worn out and so restless with my breathing that I haven’t felt up to writing, but now that I’m better today, I feel like I could write all day!!!!  It’s so perfect outside on our deck today.

I was so glad for yesterday.  I asked my grandparents if they would like to go out on the boat with me and they said yes.  It was surprising because I haven’t been able to do much with them for many years.  They have never been on a pontoon so it was a great experience to be on the St Croix River together. My grandma was in the nursing home for a while because she was having seizures. She was anxious to do this with me and had fun.

My grandma's first time on the river

This poem came to me yesterday when I was on  the river. I dedicated this poem to “Let’s Go Fishing”.  It’s a wonderful group that takes people who are elderly or have a disability out in a boat.  They have been so lovely to be around.  This is my thanks to them.

 My St Croix River

 

It soothes and softens the hardness of life

lulling the trying images that run through our lives

into a resting place

 

It gives peace in place of unrest

giving joy to its passengers floating ever so safely on its surface

encouraging boldness where there was fear,

noting a lifetime of caution

 

It’s the perfect prescription.

no side effects noted, no complications observed

no bad habits formed

only moments that are perfect in its comforting presence

 

Thank you for being my new friend,

hearing my pleas for comfort and restored strength

understanding my need before I was aware of it

 Karly 

Sept 9th 2011

This swing bridge is in the river.

 

 

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Mulberry Poets

September 9, 2011 · Filed under Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged

I wrote a poem last week that I shared with my poetry group yesterday.  They are so encouraging to me. I love being in that group because they treat me like one of them.  I am not pitied, but I feel respected and perfectly normal.  I haven’t had many experiences like that in my life, because I am often looked on as someone who needs lots of help. Not very often as someone part of a normal group of people.

Imagine This-A Place Called Love

 In Quiet Moments I imagine a world where kindness is typical 

Where thoughtful conversations guide decisions

where people who live in shadows come into the light and are beautiful

In quiet moments I hear the children, loved and noticed

putting their touch on their world

playing children’s games, unaware of darkness

Imagine if the children who could see no dark, 

had friends who lived in the shadows…

September 4th, 2011

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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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