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 […]

Baby Knox

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 […]

Baby Knox

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 […]

Baby Knox

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 […]