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)



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.

9 Responses so far »

  1. 1

    Reblogged this on Apronhead and commented:
    . . . concerning the memorial service and the life of the girl Karly I posted about before.

  2. 5

    Shez said,

    Dear Karly’s Mom, my sincere sympathies for your loss. It is so hard to let the ones we love so deeply go. Your daughter is a wonderful inspiration for all of us.

  3. 6

    Jenni Shaller said,

    To Lois and Gregg and all who remembered Karly so tenderly at her magnificent memorial gathering –
    Thank you for sharing Karly with us in so many amazing, touching and memorable ways. I have thought about her for hours on end since Saturday. I’ve pondered her admonitions to live with care, awareness, sensitivity, faith and meaning. I’ve envisioned the many gorgeous photos of her with friends, family, and Beau, and remembered her haunting, evocative music. And I’ve unexpectedly burst out several times singing ‘I’ll Fly Away’!

    Our love to all of you as Karly assumes her new place in your family, as a spirit who blessed this world for so many years but who ultimately had to soar. What she gave to life is equaled only by what you gave to her.
    With much love from Jenni Shaller and family

  4. 7

    eve blockley said,

    To Karly’s parents please forgive me if i am doing wrong by writing now, i have just unknowingly responded to a Karleys blog having read it with such interest and was so overwhelmed wrote a response to that beautiful young lady, who has taught me so much, only after posting it sadly i got the shock at the head of the page karlys memorial. Please accept my deepest condolences and lack of insight responding to Karlys blog unknowingly at this time. I can only say to you that god bless her even in death she is touching guiding and helping so many. What a evolved and special child god gave you to cherish until he called her back. May you recieve peace and healing.

    • 8

      spiritdances said,

      Hi Eve
      I am so honored that you took the time to write. Karly is so sorely missed, but we know she is free from all her physical struggles from Rett Syndrome and for that we are very grateful. You honor us by writing, because Karly wanted nothing more than to help others while she was here on earth. She lived for so many years being undervalued and misunderstood, so when she found her voice, she used it for good. Thank you for recognizing her as the beautiful, loving, spiritfilled young woman that she is. That brings joy to this mother’s heart. We walked many long and difficult paths together and I couldn’t be more proud of the lovely person that she was.
      Lois Swope, Karly’s proud mom

      • 9

        eve blockley said,

        Dear Lois, i am so touched you responded so quickly. I have just
        come dowmstairs having put Rachel to bed. I was talking to her about Karley’s refreshing words and (quote) always believe a retts girl understands what you say!!!!!! well i have always known that but now i feel more confident because Karly confirmed so many things to convince me further. I am not going to say to you i cannot imagen the pain of your loss Lois, because i can, having lost my other beautiful daughter Keeley, she died 5 years ago and you can only learn to live with the loss of a child, until one day you will be reunited. Keeley was 27 and had a child herself who was just 8. Always remember your special girl Karly was your gift and was only intended to teach and llight up your life, and i am certain,so many others for the time she was allocated to stay here on earth, i am so grateful i found her today for i know she was beautiful and special, and i only selfishly wish i had had a chance to communicate before she left. But that was not meant and she has touched my life from another realm. Thank you for your kind words and i am so pleased i didn’t offend. I am sure your lovely Karly will visit you Lois in your dreams. Thanks Eve

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