A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially  if something doesn’t sit or seem right is now a way of life. No oneRead More →

I was reading an excerpt of the book by Taraji P. Henson (Around the Way Girl: A Memoir) about her life as a single mom and it hit me hard. Harder than I imagined. I read and re-read the few sentences and I felt as if I wrote them myself. Needless to say it’s next on my “to read” list. Taraji was married to what she calls her “forever man”, her first love, but over the years he eventually becameRead More →