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 one knows their child like his parents. Even so, parents are often treated by doctors in general in a dismissive and condescending way. It’s up to us to make sure they understand that it’s our job to tirelessly fight for our children’s health. It’s up to us to make sure that those who work FOR us acknowledge the validity and credibility of our point of view. But, it didn’t start thatRead 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 became physically abusive.  It took guts, but she decided to leave him-which was a sound decision as it saved her and her son’s lives. Unfortunately this decision opened her up to many judgements by people who love to judge others in situations they know nothing about. All of a sudden she was a “baby mama”. People started assuming that if there was no diamond on her ring finger, she must haveRead More →