Quote on Being Supportive

We are all ill equipped to judge situations we know nothing about. What we can do is be supportive. Listening is the most important thing I tell everyone to do. Offer to help, acknowledge, respect. ~Silvia Corradin Post Views: 151

How To Show Respect to an EB Parent

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. “YouRead More

Everyone Matters

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 intoRead More