Sep 10, 2010 Posted by Jolene

Living with a Terminally Ill Child: Evan Newport’s Story

If you’ve visited DifferentDream.com in the past, perhaps you’ve read the posts about Evan Newport and his family. Evan was born with Noonan’s Syndrome, a heart condition that leads to early death. Doctors expected Evan to die before he was a year old, but he outlasted their predictions. He lived for seven years, and his father openly shares both the joys and pain of parenting their... read more

Aug 18, 2010 Posted by Jolene

Hot Button Phrases: Parent Responses, Part 2

Welcome back for Part 2 in this series about phrases that push the hot button for parents of kids with special needs. In the first post, I shared my hot button phrase. In this post, I’m sharing the stories of some moms who answered my original call for phrases people need to stop using in the presence of kids with special needs and their families. How Did He Get This? Today’s response came... read more

Jul 30, 2010 Posted by Jolene

The Longevity of Grief

Talking to parents who have lost a child isn’t easy. It’s about the hardest thing about working with families of children with special needs. Because many of those children are medically fragile. Many of them will die young, too young. The Unknowing Friend’s Take Those of us who have never lost a child share some misconceptions about grieving the loss of a child: We think it’s... read more

Jul 5, 2010 Posted by Jolene

The Evan Newport HOPE Awards

If Evan Newport’s name rings a bell for you, maybe it’s because part of his story was told in A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children. Or maybe it’s because you read about his death in November of 2009, when he gave up his seven year battle caused by Noonan’s Syndrome. Or maybe you watched the incredible video, All Around... read more

Jan 13, 2010 Posted by Jolene

Extraordinary Measures & Evan Newport

Yesterday, I received an email from Scott, Evan Newport’s father. Evan’s Story Evan died the day after Thanksgiving after a seven year battle with Noonan’s Syndrome. You can read more of Evan’s story at two previous DifferentDream.com posts: Good-bye Evan Newport and Evan Newport – All Around Me. Scott’s Email Now, back to the subject of Scott’s email. He wrote... read more