I know I talk a lot about my son, but today I want to address the #metoo movement as I feel it’s been long time coming. Let me go on record to say I’ve never been sexually assaulted. However, this does not mean I cannot say #metoo, as I have my own stories about being disrespected, nor have I been immune to forceful advances and harassment. All in all I know I’ve been lucky, the fact that I was very shy when I was younger really helped. I would never put myself in the position where I would be easy prey. I do have some stories, however. I will not say “who” or “where”, but these incidents did happen to me. I remember being in a library 20 or so years ago… I was doing some research and an old guy that worked there was helping me. He was atRead More →

The other day Nicky had his first appointment with a Physical Therapist in our home. Aside the fact that this was the first time in his life that his insurance approved such a thing, I wasn’t sure exactly how she was going to accomplish anything with Nicky, knowing that moving at all is just so painful for him and she can’t touch him at all. My worries however, had to take a backseat when she said something to me you should never, ever say to a parent of an EB child, especially one as old as Nicky. Without knowing anything about EB at all, she told me to “be careful” of what I put on his wounds. “You can’t just put any cream on wounds”. She said. Hmmm… Duh? Mind you, she’s not a nurse nor a Doctor, she’s a physical therapist, and she never saw Nicky’s wounds, I hadRead More →

Sometime ago I decided not to be angry anymore. I didn’t want to be angry at EB and what it was doing to my son. I was done blowing my lid over things I had no control over. I was tired of being depressed all the time. I was tired of being overwhelmed. I was done with all of it. I wanted to smile. I wanted to be happy. But how could I? I was on a journey. I was also tired about being offended at stupid crap that did not change my day to day life, and also done with defending my point of view about things. My beliefs are my beliefs, I don’t need to get into an argument with someone nor belittle anyone else for not having the same beliefs. This also meant I didn’t need to shout my beliefs through the rooftops to make sure they wereRead More →