Can you remember a time in your life when you felt completely helpless? I do. It was the day when a Doctor escorted us into a small room in the hospital after Nicky was born and told us the grim news that not only our newborn son had a rare, extremely painful incurable disorder, but that he would most likely not see his first birthday. I was in shock. Only 19 months earlier I had a baby that was stillbornRead More →

I am so glad Nicky and I survived last week because it was exhausting. Monday and Tuesday I drove us to Stanford and back with an overnight stay. One way is 6 hours. I was trying to explain to my parents how amazing but tiring this trip is for us. I love driving, always did. We have our “stops”, our routines. I’ve come to know certain rest areas like the back of my hand, and certain truck stops are very coolRead More →

So many things happened these past few weeks that made me wonder about a myriad of issues. I start every morning with a good dose of “positive”, “funny”, “loving” or “inspirational” images I post on my sleepingangel Facebook page. Why do I do that? Because it helps me start the day in a good way, remembering to keep the negativity away. There is always that “friend” that must post negative stuff, so I give them the benefit of the doubtRead More →

I read a quote recently which came across a Special Need Parenting website that truly aggravated me. It stated that it was not the parent’s place to tell their child’s story, that the diagnosis was that child’s journey, not the parent’s. Needless to say, that quote received quite the amount of backlash, since most parents of chronically ill children’s lives are completely turned upside down and changed in ways hard to describe in a one-sentence answer. This is the reason why IRead More →