Butterfly Cards for Cockayne Syndrome

The butterfly is the symbol of those whose lives have been cut short by Cockayne Syndrome.

Since baby Knox was added to Amy and Friends worldwide support group I’ve been connecting with other families around the globe who have traveled this journey.

I’ve been looking for answers, searching for something to ease the pain of this diagnosis.

And I’ve started making butterfly cards.

I made this one with a special young mother in mind who contacted me recently.  She had seen Knox on the site and immediately noticed the incredible resemblance he had to her baby boy. 

 I had noticed it, too.

This sweet mother lost her little precious just a few short months ago at the age of 6 and a half months to CS 2. 

Too soon. Much too soon.

Sweet mother, if you stop by, please know that you are loved today.

Loved by your family, your friends, and by me.

I may live across the ocean, but my heart is right next door.

8 Comments

  1. Melanie Keel

    Scarlett this is just beautiful. Bless her heart and yours!! Love you~~

  2. Can I ask, how did you create the sheet music?

    • bscarlettc

      Hey Paul, I tore the sheet music out of an old hymnal. I have several that I’ve picked up at Half-Price books to use for art projects. Thanks for stopping by!

  3. Beautiful card Scarlett, love the blues and the sheet music!

    its amazing how in speaking about these difficulties we can connect with others. I really feel thats a blessing for people who have experienced this loss, and who are currently going through these hard times.

    It truely helps just to know, that someone else knows!

    Much love to you and yours, think and pray of you and your family often, even if I don’t stop by!

  4. jeana Boatright

    I knew in no time you would be making something beautiful to bless those on
    a similar journey. Bless your sweet heart for reaching out to the other sweet families. Love you so.

  5. Scarlett, this is absolutely gorgeous, perfect. This young mother will know that you at least understand the kind of pain she’s feeling, so your support will mean that much more.

  6. My dear Scarlett, what lovely cards and I commend you for using your art to
    reach out to others during this extraordinarily painful time. You are loved and prayed for every single day and often during the day. I hope you find comfort in the fact that God has placed you on the hearts and minds of many people so they can pray…..even when your own lips cannot find the words to do it for yourself. Some of the best prayers are silent ones.

  7. Blue butterflies are rare, as is this disease~ Your cards are beautiful and their meaning a treasure and testament to one’s soul journey in a sea of pain. You connecting with others is so important. We find some comfort in the bigger picture; I know. It reminds us we aren’t alone on the journey that burdens our souls and those we love. Thinking of you, Baby Knox and your family~xXx

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