New “Stare Cards” For Cockayne Syndrome

Last summer,  I made up some ‘stare cards’  for CS to hand out when I have Knox with me.

I have passed out lots of cards in the last few months.

Yesterday, some other CS moms expressed interest in these on Facebook.  I worked on them all evening, re-working the text, cleaning up the lines, and adding red hearts.

Below is the link to download a sheet of 4 cards.

If you are a CS parent, relative, caretaker or friend,  please feel free to print off as many of these as you need.

Love, Knox and family  :)


Download Stare Cards   ( UK site)

Download Stare Cards   ( US site)


Starting A Memory Album

I love Knox so much.

Losing him doesn’t seem possible…

He had his first ear infection last week but he’s feeling better now.  His intake went critically low, but he managed to stay hydrated and has managed to take in almost 11 ounces of Pediasure today on his own.

I realized this last week that I needed to begin his memory album.

And I’m really not sure if I’ll be capable of doing it after he’s gone.

So I went to the local scrapbook store in search of some special supplies for this album, but all I came home with was some black and white tape.

None of the stuff seemed right.

None of the baby papers seemed to fit, and none of the stickers had the right words.

Maybe because none of the stuff is made for my baby.

So I got home and drew…




The album I’m using is 8″ x 8″, so I had to cut down the drawing a bit.

A newly opened rose, and many winged friends coming to see the new baby.

A perfect boy with heart-shaped lips has been born.

It’s the beginning of a beautiful life…

I added some more butterflies into the picture, mounted on foam tape, and also went over all the pencil lines with a ZIG .03 pen.

The dotted tape is from  SMASH and the sheet music tissue tape is from Tim Holz.


The first page is done and I’m glad I’ve gotten started.

I know it’s not sophisticated or fancy, but it’s what felt right.

This week my young artist will be illustrating poetry.

This is something we’re trying for the first time so I’m excited to see how it turns out.

Thanks for stopping by ~