Remembering Karly’s Life

October 4th, in “Karly’s Spiritdances Garden”. This is the view from the chair Karly sat on in her garden the last few months of her life.

October is Rett Syndrome Awarenss month.  As Karly’s mom, I know how much she struggled throughout her life and ultimately died as a result of  the many complications that Rett Syndrome created in her body.  These are her some of her last written words:

“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.” 

Everyday of her life was full of enormous challenges. She did her best to live well in spite of them. My memory is full of the pain, isolation, stress, grief, loss and fear that Rett Syndrome caused.  Karly’s wish was that she could help other girls affected by this disorder by donating to Rett research.  Our family will be donating from the generous gifts we have received in Karly’s honor.  Please consider doing the same. Karly wrote her own bio for Girlpower2Cure.  Go here for making donations in our dear Karly’s honor.

One of the effects of Rett Syndrome is the loss of purposeful hand movements. That includes holding hands. The last few days of Karly’s life she was able to hold onto our hands. I treasure this photo of her arm entwined with mine.

Karly’s hands remained small and delicate her entire life, here at 27 years of age. Most girls with Rett Syndrome are able to do little with their hands because their hands are busy “fiddling” in Karly’s words, and often stuck at mid-line not allowing them to separate. Karly’s hands were separated each doing their own thing, so it allowed her to eventually find a way  to communicate with us. And she did that so beautifully! I miss hearing her typing.

With much gratitude,

Lois (Karly’s Mom)

Comments (6) »

Karly’s Memorial Service

We honored Karly’s life the best way we knew how….through her music, her words, her poetry, by hearing her last composition live for the first time during the service, with candles providing the light she loved, beautiful flowers adding to the color she loved, photos of a life well lives and sharing our story. One full of mystery, inspiration, pain, loss, great joy, grief, great love, creativity, faith and freedom.

Thank you to the hundreds who came from all over the country to join us in loving and remembering Karly. She brought so much light into the world and we feel her loss so deeply.  She often told us over the past 12 years to remember, “the day I die will be the best day!  It will be the day I get my freedom.” I always told her if that day came I would try my best to remember her words, because it would be a very sad day for me as her mom.

In a 2010 chapel talk Karly prepared for other adults living with physical disabilities, she said:

“We get caught up in what we want to have happen in our lives, and forget that God has a much bigger vision for us than we could possibly have for ourselves.  

God knows who we should meet.  He knows who will help us fill out His plan for our lives.  We don’t need to force anything  But I can tell you that if I don’t respond when God gives me a chance, even if it seems small, I miss an opportunity to partner with God.  Don’t miss the small opportunities.  They are NOT small to God.  Don’t get so worried about the big things that you neglect the little.  

 God will open doors to you and give you a life you feel great about. I have found that my life, even with all it’s struggles, is a life that I love.  And maybe God is stronger in my life, BECAUSE of my disability, not in SPITE of it.”

This is how she lived, as best she could everyday in spite of enormous challenges. Thanks for all your wisdom, love and light Karly. We will not forget!

With great love, Lois  (Karly’s Mom)

 

Image

Karly’s latest piece of music will remain untitled. She finished it a few weeks before she died and was unable to let us know its’ title.

Comments (9) »

Karly’s Obituary

This was posted in our local paper last week.

http://stillwatergazette.com/2012/08/27/karly-elizabeth-wahlin/

Lois-Karly’s Mom

This is on the St Croix River, taken 3 years ago.

Comments (4) »

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

Comments (17) »

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

Comments (23) »

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


Comments (3) »

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

Comments (1) »

Follow

Get every new post delivered to your Inbox.

Join 70 other followers