After I lost Alex at full term 20 years ago, the one thing I could not do is watch anything “dramatic” on TV or the movies. “ER” was popular back then and I avoided it like the plague. 20 years later, Medical Dramas are still hard for me to watch. I was crying so much at the time that I realized that I needed to laugh, I needed to do things that would make me smile and forget, even for a moment, all that I was going through. So, TV shows like “Friends” & “Frasier” became my salvation. A few weeks ago I had a great conversation with a new friend and once he found out that not only I had Nicky to care for, I also lost a baby at birth and our family also struggled through my husband’s health issues… he looked at me startled. “How are youRead More →

A few years ago I had a brief encounter with a little girl that I am still thinking about. I was at Children Hospital Los Angeles with my boys; Nicky had an appointment with the endocrinologist (I think?) and on our way out a couple was behind us with this little sweetheart in a big stroller. She had a flower on her hair and a frilly dress on, but what gave us pause was her face. Despite having some sort of excess bone growth condition, which made her head 2-3 times bigger than normal, she sported the sweetest smile on her face. I told the boys to smile and wave back, which they did, and it wasn’t until we were in the elevator that they asked me all sorts of questions. They wanted to know what she had. I of course had no idea. I looked it up online butRead More →

I had a great friend yesterday ask me if I could write a blog about how people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do? I must say, I had to think about this one. Truth be told, being a special need mom can be isolating, lonely.  No one knows what to say to me.  I feel a distance, a disconnect from just about everyone because I know that they don’t know what this feels like and they just can’t relate. I have family members who have not spoken to me in years because of this very reason, they just don’t know what to do. I have supposedly ‘close’ friends who can only mutter a word or two… on occasion. They might wish me HappyRead More →