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.  


23 Responses so far »

  1. 1

    Angie said,

    Lois and family – I am sooooooo sorry for your loss. I have been following Karly’s posts and am absolutely shocked by the news, want you to know our prayers and hugs are being sent your way. I know she will be very missed. Thinking of all of you. Dave, Angie & Aaron Gelle.

  2. 2

    janice ramsey said,

    So sad to hear of Karlys passing..I so loved reading her blog..I am a mom to another Karley..and she has rett as well..I found answers in her blog to things that only she could understand and I also found peace..she had a way of communicating her love and faith…she was and is a truly beautiful soul..keeping you all in my prayers<3 Janice and karley ramsey(Colorado))

  3. 3

    Thank you, Karly, for “speaking” for our girls. You have given us so much insight to our sweet Alyssa. Now, you may rest in the arms of your Heavenly Father!

  4. 4

    Linda said,

    My daughter has Rett Syndrome. Reading Karly words lets me know everyday what I see in her eyes is all true. God has blessed us with Karly ,Sammie and other girls with Rett Syndrome to remind us to love without conditions. Karly was truly blessed with beautiful words and a lovely family she adored and so enjoyed sharing with us. My heart goes out to you and your loss. My prayers will be with you and your family.
    Linda Miller
    Cincinnati, OH

  5. 5

    jessica said,

    My daughter Lexie age 3 as of aug 13th 🙂 ..she also has rett syndrome i want to say thank you for sharing this with the world and “speaking” for all our girls all around the world free sweet Karly into gods arms. Prayers to the family ❤ *Jessica * PA

  6. 6

    Alan and Karen Matchinsky said,

    To Karla’s family. It is with great sadness that I learned of Karla’s death today. And then I read her blog, and am so deeply touched.

    Karla has given me so many uplifting moments. Especially on those St Valentine’s Day occasions when we would get to sing for Karla and her class at White Bear Lake HS. Singing valentines with her dad and our quartet at her school was a most unbelievable and rewarding experience. And always allowed such a tender connection between dad and daughter. I will never, ever forget the joy the singing would bring to Karla’s heart. It would literally light up the room. And I could feel the afterglow in my heart for weeks after.

    We know Karla is skipping down the streets of the New Jerusalem today. Healed. Healthy. Happy. And hand in hand with Jesus, the ultimate Healer.

    Our prayers for all of you, left behind.

    With much love,
    Alan and Karen Matchinsky
    Apple Valley, MN

  7. 7

    Jill Johnson said,

    hello Lois. I’m so sorry to hear of Karly’s death, especially not knowing she was so ill. I haven’t seen Kim yet – she will be sad too as they were the only Rett women communicating in a sophisticated way that I know of. I enjoyed our letters to each other. Best wishes to the family – your loss will be immense.
    Jill in Oz

  8. 8

    michelle said,

    Dearest Lois, I am crying to hear of the loss of your darling girl Karly. I found her blog just months before my daughter with Retts, Belle aged 12 passed away from a respiratory illness. My heart goes out to you and your family. Her eloquence, tenacity and intelligence gave many of us hope and strength.. You must be so proud of her and I am sure she is also proud of you and grateful for the life you gave her. Blessings and love and my sincere condolences. I hope our girls are meeting and playing and enjoying their new found freedom. Michelle West Oz

  9. 9

    Emma said,

    Dear Lois, I’m so sad to hear about Karly. I wish you and your family much love at this time. Thank you for putting up Karly’s words from February – she was always such an inspiration to us.
    Emma & Eva

  10. 10

    Anita Morris said,

    Wish I had met her, what a precious angel of God. Her belief and faith give me much hope, that while my angel has not found her communication ability yet, she has full knowledge of Gods love in her life. Praise God for the blessings to all of us through your little girl.

    Anita & Jayline Morris

  11. 11

    Adel Forsythe said,

    Dear Lois, I’m so sorry for your loss and ours. Karly helped us immensely to understand our Katy’s struggles within her body. She gave us so much hope. We are mourning and rejoicing with you. I can’t wait to meet Karly in heaven. Love and peace to you,

    Adel & Bill Forsythe
    Valley View, TX

  12. 12

    Because of Steve Nolte’s post, today I met Karly. What an obviously wonderful young woman she was. I’m so sorry for your loss, but happy for the years you had this amazing person in your life.

  13. 13

    Kelly Stewart-Nolte said,

    Karly’s Family,

    I never met Karly…but I know her father, Cleon, very well. When I met my husband, he was singing with Cleon in their barbershop quartet. I want to express my sympathies to her family. I always heard such wonderful things about Karly and in the letter she wrote in February brought tears to my eyes. What a strong, beautiful woman she was! You are all in my prayers.

    Kelly Stewart-Nolte

  14. 14

    Lynda Hansen said,

    I was blessed to be a small part of Karlys life for a short time. In that short time, I was able to walk away with something that will last a lifetime. To look into Karlys eyes I would see beauty, harmony, wisdom, peace, and God. She was a beautiful person and angel. Along with her family.

  15. 15

    Mark Haen said,

    Her poem and last words have moved me and others here at EasyStand. I am proud to that I got an opportunity to meet Carly and still enjoy looking at the photos from that shoot. God bless her, may we all have the courage and understanding that she had.

  16. 16

    Suma Balaji said,

    Thanks Karly for letting us know how Rett girls feel. This has made me understand my daughter more than any specialist’s insight. You are a great soul. I’m sure you will be pain free now. We will pray for your family. we will miss you!!

  17. 17

    Carrie said,

    Dear Lois, I’m a Rett mom. I am so sorry for your lose. I sent videos of Karly to my family, friends and even her doctor because when I saw Karly and her behaviors she was so much like my Brittany and It was like Karly was speaking through Brittany to get her voice out. It gave people more of an understanding about Rett. And, it gave us hope. Ours prayers are with you.

  18. 18

    Dianne Scott said,

    I’m sorry to hear for your loss the blog by
    Karly was so inspirational!our daughter
    Addison is 6,Rett is part of our life.Life is
    different but the beauty our girls hold in
    Unexplainable except we see God through
    Her eyes!

  19. 19

    Nancy Jo said,

    I love you Karly. Looking forward to those long discussions we talked about so many years ago when you greet me in heaven.

  20. 20

    Jan & Bev Noles & Family said,

    Dear Family,
    Memories come of meeting you many years ago when we lived in Bismarck..It has been our loss to not have kept in touch with you..Please forgive our lack. We are saddened to hear of your loss, but are in awe of all that has transpired in your lives, & in Karly’s..wonderful…Love & hope..We will never know all the experiences you have gone through..the joys & sorrows..but can tell you never stopped looking to The One Above, who knows, cares, & understands everything. Thinking of you in Sympathy & Love..

  21. 21

    Thank you, God, for Karly’s beautiful life.

  22. 22

    Dear Lois,
    A friend who knew Karly thru the horse program told me about this website. I can tell Karly was an amazing, wonderful person by reading her blog. How strong she was. I lost my angel on 6-23-12, just 2 days before her 24th birthday. She was never diagnosed with anything but epilespy throughout all the years of doctoring, but when I read the Angelman syndrome, it sounded like her.
    She was wonderful, the most important thing in my life. Now that she is gone, I am an empty shell. Funny how someone who can’t communicate can teach you so many things. She even taught me how to drive through heavy traffic in the cities! She made me a better person, there is no doubt in that. I share your pain and you have my deepest sympathy.

  23. 23

    sheila said,

    I am an occupational therapist. I have been reading Karly’s blog for the last year and a half. I have learned sooo much from her. I work with girls that have Rett’s and because of Karly I have changed my whole treatment approach. I am very sorry for your loss. I can tell you for sure, because of her and her words, other girls with Rett Syndrom have benefited. I will never forget what she has taught me. God bless her and your family.

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