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...

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...

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...

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...

Not too long ago, I shared with you about the death of Evan Newport, a little boy with Noonan’s Syndrome. When Evan was born, doctors told his parents, Scott and Penni, not to expect their baby to live more than a year. But the amazing little boy survived longer than anyone expected. Evan Lessons In seven short years of grace, Evan taught his family and all who met him many important lessons....

A few months ago, I posted an update about Evan Newport, a little boy featured in A Different Dream for My Child. The blog post told about Evan taking part in the festivities surrounding the Big House/Big Heart Run in Ann Arbor, Michigan this past October. Now it’s time for another update on Evan and his family. Early Friday morning, the day after Thanksgiving, a brief email arrived from Evan’s...

Every now and then I update the progress of families profiled in A Different Dream for My Child, to give you an idea of what life is like for them on an ongoing basis. A week or so ago Scott, the father of seven-year-old Evan sent this link to a recent article about his son. Noonan’s Syndrome Evan has Noonan’s syndrome, a heart condition which typically includes a thickening of the heart...