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 […]
Tag: genetic disorder
Little Turtle in a Castle
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 […]
Happy Birthday Knox ~ 4 Gifts Given and Received
Happy Birthday to my little son in Paradise. Knox would be 4 years old today. I think the hardest part is not being able to say “I love you”; not being able to hold him. He’s been gone 5 and a half months. I miss him terribly. Giving gifts of […]
The Dead Dove
When people see this image they respond in different ways. Some have said it’s a photograph full of sadness, that it’s hard to look at. Some say it’s foreboding, an ill omen of days to come. Other are more pragmatic: The dove flew into the window and fell down dead. […]
One Month Without Knox
There were 5 diapers left in his diaper basket. There were 28 medicine syringes left in the kitchen drawer. I have received 122 sympathy cards. And all the flowers have wilted. In the morning, I wake up and set things up as if he was still here. I lay his […]
One Week Without Knox
It’s been one week since I buried my son. I’m trying to adjust to life without Knox and trying to make sense of the last 3 weeks. At this point, I feel as if I don’t care about anything. It’s understandable, I think. If I live, fine. If I […]
Knox Went to Heaven
My baby is gone. My little Knox had been battling a double ear infection over the last month. None of the antibiotics worked. Then he caught a respiratory virus (RSV) on top of it all, and his body wasn’t strong enough. He spent the last 5 days of his […]
“Love Has Wings” Student Documentary
My oldest daughter made this short documentary on Knox’s rare syndrome. I’d love for you all to watch it, and if you’re able, leave her some words of encouragement ~Thank you~