Published in Artful Blogging, Fall 2012

What a cool birthday present.

I came home from California and saw my blog published in Artful Blogging, just in time for my birthday on Sunday.

Now that’s better than a big piece of cake!

Thank you to editor, Jennifer Taylor, and everyone at Artful Blogging for including me in this beautiful publication.

Artful Blogging is sold around here at Barnes and Nobles in the Craft/Hobby section.  If you find yourself at the bookstore in the next couple of months, check it out.

I promise you’ll want to put on striped tights and pretty shoes and take pictures of your feet.

Or maybe you’ll be like me when I read my first issue over 3 years ago, and be inspired to start your own blog.


My time in California at the CS Family Conference was encouraging and also hard.  I met other families with children who are much farther along with the disease. Children with Cockayne Syndrome suffer so much as they rapidly age.  It hurt me to look at the older children and contemplate my baby’s future.  I experienced a lot of fear and anxiety the first day but the children are so precious.   And the support and strength from other families is priceless and I’m thankful we were able to go.

As far as I know, I’m the only one blogging about life with a CS child, so I feel a sense of responsibility to write honestly about this road and to raise awareness as much as I can.  I also feel a renewed sense of urgency to raise money for research.  I’m going to try and dedicate several days this month to getting some more card sets made for Knox’s Etsy shop.

Here are two of the sweetest little boys in the world.  Knox made a new friend who also has Type 2 (severe) Cockayne Syndrome.  Knoxy is on the left with his glasses and C.  is on the right and is 6 months older than Knox.  They look so much alike.

And one more special photo…

Some of you may remember when I posted about a mother from Denmark who has lost two boys to CS.  She came to the conference and I got to meet her and she was able to hold Knox. The pictures of her boys online enabled us to get an early diagnosis.  I was so grateful to her that I painted her a picture in memory of her boys.  It was so wonderful to meet her in person.  I still have some post-cards of the painting for sale in Knox’s shop.

Knox was the youngest and smallest kiddo at the conference and he got lots of love from everyone.

And we just keep lovin’ on him as much as we can, every single day.

Thanks for stopping by!