Archive for Writing Memoirs

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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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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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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The Sun Will Come Out Again

November 4, 2011 · Filed under Composing for piano, Disability Awareness, Music & Art, My Faith, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged , ,

I love being at the lake with my Mom

This is in our front yard.

I felt like it was impossible for me to feel great again, last week.  I was so unhappy that I thought it would be this way now.  No matter what I said to myself I couldn’t feel hopeful inside.  I was very afraid and it caused all kinds of trouble in my body with Rett Syndrome.  I prayed, I talked with my Mom and Amy, I walked, I watched relaxing videos, I listened to soothing music, I went outside as much as possible, we went for long, relaxing drives, I listened to books on CD, I listened to sermons from church and nothing stopped how my brain was thinking.  I felt so crazy!

I decided to share this today because I’m almost done now with the seizure medication that caused all of this to happen to me, and I feel great today!  I never want to feel like that again.  I would rather have a seizure than feel crazy.  I don’t know if other people feel that way on their medication, but if any of my Rett friends do, I feel so sorry for them.  I have never felt well on the medications that are suppose to stop seizures, but this was the worst.  I think if I had to do it again, I would say No.  My Mom had me decide if I wanted to try the medication and didn’t start it until I said, yes, it was time.  I feel glad for that, but I feel really glad to be done.  We are seeing my Dr next week to see if she has any other ideas.  She wanted me to start anti-anxiety medication to stop how crazy I felt, but that made it worse.  

I’m eager to say something: In my life I have had many hard days with Rett Syndrome.  I have had days when I couldn’t stand to be in my body anymore, and I get discouraged.  I pray a lot for those days so I don’t feel so alone in my struggle.  I haven’t always felt joy in my life.  There have been many days that I can’t imagine a harder life than the one I have lived for 26 years. But then days like today come and I see how beautiful life is and I see that I have not been alone, that God has given me a great gift.  How He has used the hardest times in my life to give me understanding, courage and gratitude.  I know that God doesn’t like Rett Syndrome.  And I believe with all my heart that He didn’t create it.  That it’s something that happens to humans for some reason we don’t yet understand.  I believe that God has given me the ability to communicate my experiences for a reason, and today I am sharing some of those.  Only God can make sense of Rett Syndrome.  I’ve been surrounded by great, loving people.  My Mom and I have been through some very painful days together.  They have been hard on her.  But today, our lives are better and our spirits are happy.  We have many friends to thank for that.  People who have entered our lives recently and people who have been here with us through much over the years.  

I wanted to share one of my favorite songs that I composed when I was 16.  This is one from my CD, In My Own Voice.  It’s title is:  For Real Friends.

I hope you enjoy it.

One of my favorite friends who has Rett Syndrome. I have so much joy when I am with her.

It is always a lovely day when we are together. Both of these sisters has Rett Syndrome.

Love, Karly

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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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A Miracle Happened!

July 28, 2011 · Filed under CD production, Disability Awareness, Facilitated Communication, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged

This week I had something really wonderful happen to me and I want to share it with you. My friend Elizabeth who also has Rett Syndrome and communicates by typing too, came for another visit.  We love being together!  It’s so rare for me to be with another Rett girl who can communicate, so when we are together we have so much fun.  I feel free with her.  

We were so close to the water, which we both love!

We went to a lake near our house.  Our mom’s went to pick blueberries so they were not with us, but a new person we just met to be a caregiver for me, went with us too.  What she saw has never happened before with Elizabeth and me.  We decided to switch facilitators so Elizabeth’s caregiver facilitated with me and I was able to type.  That was the first time we did it together and that is a miracle, because many times when people see me type with Mom or Amy, they assume they could never do it, and stop trying.  But when Kristen took my hand and helped me stop my movements I was able to type words for her.  It was slower than Amy or my Mom and that is a miracle!!

Then, Amy facilitated with Elizabeth and she typed for her too, immediately!  I wanted to share this because both Elizabeth and I have struggled so much to type out our thoughts in our lifetimes and few people try to type with us, which makes us sad.  It makes our Mom’s the only person everyday that we can type with, so whenever anyone wants us to respond, they run get our Mom’s and it has made them exhausted and us frustrated because we can type with more people who are interested in learning.

When I was thinking about this today and think of all the people who have been in my life and have missed what I wanted to say because of their inability to help me communicate, I felt sad.  But then I remembered Tuesday, and I remembered how happy Elizabeth and I were to be free to type for the first attempt at it with another person. I felt so much joy, because I know it is possible still for new people to help me communicate.  I feel really hopeful that my new caregiver who was really interested in what happened will be able to type with me too.  

I stop and chew on my bandana while I am typing. I am visiting with my friend Barbara who produced my CD.

My friend Ashley and I could type slowly together. She just moved to Chicago and I miss her so much.

It was a miracle because Elizabeth holds her hand very different than I do.  She has very strong fingers and holds them really straight and types very well right on the key with her left hand.  I type with my right and curve my finger and use the side of it to touch the key.  I fly over the keys really fast so my facilitator looks over my right shoulder to see the letters.  We both move our heads while we are typing, because both of us can see better if we don’t stare straight at the keyboard, so we move a lot.  Rett Syndrome doesn’t let us sit still very often.  Elizabeth is always moving her body and I am always moving my hands.  I stop to chew and fiddle by drumming with my left hand while I’m typing.  I move my upper body forward and back all day long.  I thought this is important because I have had so many therapists think if we aren’t looking straight at something that we are not paying attention.  It’s not true, don’t believe that!  We get everything.  We see everything.  

Elizabeth and Kristen are coming again next week and we are going out on this boat again. We love being together near water.

I was sharing my excitment with Amy just before we went on stage and my Mom read the message I had for the audience. (The Arc MN 2010 Annual Meeting) There were about 350 people there.

I wanted to share our miracle and how fortunate we feel that this happened for us.  Everyone was smiling!!  Everyone felt hopeful.  We were so thrilled!!  My Mom says she wished she was there with the camera, but the blueberries are great!

Love, Karly

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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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