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)

7 Responses so far »

  1. 1

    Lynn said,

    I can’t begin to tell you how grieved I am. I had not checked in with Karly in a while, very busy summer with 6 children. So you can imagine my great shock and sorrow today. The tears won’t stop. Karly gave and continues to give me such hope and encouragement for my Lily. I love her music. And her fortitude and attitude. Thank you for being such a great mom for her. You are an inspiration as well. And Gregg too. Please know you will be in my prayers for comfort and strength. An untitled piece of music seems so speaking of a life unfinished. But I know God determines our days. Thank you for sharing these pictures and poems and thoughts of Karly’s in her last days. I am so thankful she had the beautiful garden to enjoy this summer.
    Lovingly, from a stranger but kindred spirit,

  2. 2

    Jennifer said,

    I am greatly saddened by the posts I read about Karly’s death. An avid blog follower I haven’t checked in over the last several months. I stubbled on your daughters blog a few years ago and enjoyed reading her beautiful, postive words. She was and still is an inspiration to so many! Good Bless! Jennifer

  3. 3

    You can be so proud of what she accomplished with her life in spite of such great obstacles. Bless you all in your sacrifical living.

  4. 4

    Mary said,

    Thank you, Karly, for your beautiful music and poems. I am so inspired by you! I have just been reading some of the last posts, and am overwhelmed by the love I feel from you and your family. Thanks for sharing your journey with everyone.

  5. 5

    Lisa Jenkins said,

    I haven’t checked Karly’s blog since school started. For some reason, she crossed my mind tonight, and I decided to check in. I am so sorry to read of her passing, but at the same time, my heart rejoices to know that she is free and whole with her best friend, God.
    I teach elementary aged children with multiple disabilities and came across Karly’s blog several years ago while searching for information about Rett Syndrome. One of my students was a young girl with Rett Syndrome, and I was convinced that, in spite of her physical limitations, she was “in there”. I desperately needed information and insight. I have no doubt that God led me to Karly’s blog. She was proof of what I knew was possible. Her words brought a deeper understanding of what I needed to do and to BE for my student. As an added blessing, Karly responded to one of my comments by email. She answered several specific questions, offered suggestions and even sent a personal message of encouragement for my student and her family. She and her blog were such a blessing to us all. Karly provided hope for all girls with Rett Syndrome. Her strength, faith and spirit were truly inspiring and humbling. God bless you and your family with peace and beautiful memories of your precious Karly.

  6. 6

    Michelle unruh said,

    Hi karly’s mom, I just wanted to tell you. That a long time ago I had written to karly because I work with a girl with Rett syndrome, I wanted to ask karly some questions about some of the anxiety that the girl I work with was feeling in large rooms. Why she might be feeling this way, she couldn’t tell us herself. Karly was so sweet and emailed me back, I wish she was here today so I could tell her. The girl I work with has learned how to communicate like karly, she has a dynavox and has so much to share with us. I know she probably would have loved to have had the chance to write to karly , I hope your doing ok I miss karly’s blogs ❤️.

  7. 7

    Laura R said,

    Karly, how I wish I could have known you. Your words challenge me to change my thinking. You viewed life from a higher perspective, focusing on what you could do to further the kingdom of God, not on what you couldn’t. Many of us, myself included, still need to learn that lesson. Thank you for sharing so deeply of yourself. Your words, your music, and your light lives on always.

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