Archive for Understanding Rett Syndrome

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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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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Friends Creating Beauty

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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