NEW Greeting Cards listed in Knox’s Shop


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I just added some NEW cards to Knox”s little Etsy shop.  I began the shop to raise money for  medical research back in 2011 and have kept it going in Knox’s memory, and in honor of all the beautiful children with Cockayne Syndrome around the world.

These cards are really unique, made with designer papers and accents. One set has 3 “Thank You” cards included, and the other set features 4 all-occasion cards. All the cards are blank inside, waiting for your personal message. They come with matching kraft envelopes, and will be shipped to you, along with a small information card on Cockayne Syndrome. dscf5836 dscf5837 dscf5839 dscf5840 dscf5849 dscf5851 dscf5854 dscf5846 dscf5857 dscf5856Please consider purchasing hand made greeting cards or original art this holiday season.

All proceeds are sent to medical research for Cockayne Syndrome. Thanks for stopping by!

 

*Music on the player: “Bobcat Pretzel” by John Powell

 

Cockayne Syndrome: A Loving Nature is a Symptom

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It was my birthday last month and I received a priceless gift:

All the videos from Knox’s life on DVDs!   No gift could equal this.

In this stage of grief, watching the happy times we had with Knox is a great comfort. I love watching each and every video, no matter how short.  I watch videos of Knox often and late into the night.

Now I can pop in a DVD and gaze at continuous, chronoligical footage of him on the big screen: my little precious boy with his cute glasses, spikey hair, and rare syndrome most people have never heard of.

But there’s something about the syndrome I’d like to share with you. It’s something that I’ve only recently been able to embrace.

A loving nature is a symptom.

Yes, it really is. A loving nature is considered an actual symptom of the disease.

Dr. Neilan of Boston Children’s Hospital acknowledges this in the documentary “Love Has Wings” (at approx. 23:40) saying, ” Children with Cockayne Syndrome have a very friendly personality, which almost seems to be a characteristic of the disorder.”

How did I miss how remarkable that is?

Admittedly, I could not think about much when Knox was with us. I was so angry at what was happening and I could not accept CS as a blessing while Knox was with us. I remember one of his specialists advising me to consider how preferable CS was to others illnesses shortly after diagnosis.  I thought he was a nut!  Preferable? How could CS be preferable to anything? The diagnosis was terminal, with a lifespan of only 5-7 years. I could not comprehend what the doctor was trying to say.

I had always thought of symptoms as purely negative things. A ‘symptom’ was something in the body not working correctly. Truly, CS children do have severe and heartbreaking symptoms and that can’t be denied. But the symptom I remember most when I think about Knox now is not his blindness, deafness, microcephaly, or neurological deterioration, but his loving nature.

I look back and watch the videos of happy days and there it is!  In every frame captured from his life I can see it clearly: that sweetness of CS.

How could I have been so blessed?

I would’ve chosen life and health for him, but I wasn’t given that choice.  And that still bothers me. My mood can turn dark quickly when memories of his suffering re-surface.  Sadness can still stop me in my tracks and some memories can still make me feel like I can’t breathe. It’s awful.

I’m reminded of something the old Protestant preacher, Jonathan Edwards, said:

“The same sun that causes the brightness of the day at noon, causes the shadows at 3 o’clock”.

I still don’t understand why it happened, but if the shadows had to fall, I’m thankful God gave me Knox. He was a gift in the greatest sense of the word, and it’s my prayer that his loving nature continues to shine through in each video, in each memory, and in my heart.


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“Kill The Disease”-Using a Gun in Art

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Photograph: Standard range target, Permanent marker,  Glock 43,  9 mm pistol.

To learn more about Cockayne Syndrome and how you can help, please visit Share and Care Network (US) or Amy and Friends (UK) for more information.

 

I’ve been thinking about art and media.  With all the talk of gun control in the news lately, it’s hard to avoid the question: To what extent are artists influenced by political agendas?

I know my choice to use a gun in this piece may set people off, but that’s a risk I’m willing to take.  February 1st will mark 2 years since my little boy was killed by mutated genes.

Many artists have used controversial imagery in the name of social justice or progressive ideals. But that’s not what I’m doing.

The target is the canvas. Bullets are the medium.  Shooting is the process.

No liberal agenda here. No conservative agenda, either.

It’s an accurate reflection of my feelings about Cockayne Syndrome and what it did to my son.

And what it’s doing to children all over the world that I love deeply.

There were no other materials that could’ve made this image as powerful. As accurate.

Honestly, it felt good to shoot up the name of this disease.

I drew my gun to draw my pain with bullets, to process the agonizing loss of my son.

What about political agendas in the arts?

I’m confident those truly devoted to freedom in the arts and progressive ideals will understand my process and embrace the way in which I choose to express myself.

 

 

Little Turtle in a Castle


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Last summer, I visited a very special friend of mine in Wales.  He has Cockayne Syndrome, like my little Knox did, and he lives in a lovely castle by the sea with his family. I love him very much and painted this turtle painting for him to celebrate the special bond our families will always share.  Notice the Welsh and Texas flags flying together from the tip of his toy castle!

This is the 4th turtle painting I’ve done for CS children around the world. You can see the one I painted for angels in California, Germany, and France.

Turtles remind me of my little boy~I paint these with his memory in my heart and send them out with my love.

The painting was created on an 8″ x 8″ wrapped canvas.
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The details for the banner were taken directly from the banner in his room.DSCF3649
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And this little bear was in his stroller.DSCF3694

Love from the Lone Star State, USA!
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Painting this tiny red dragon for the Welsh flag was tricky. I had a photo on my phone to guide me, but then I realized I had to paint it backwards since I put the flag poles on the right hand side!  DSCF3667

 

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Sending all my love across the ocean today to my precious little friend and his family in Wales, UK.

I love you, Thomas ~Scarlett (Knox’s mom)
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