Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always. Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an area gets wounded too often, once it does heal (if it does heal), it remains incredibly weak. At this point Nicky can “transfer” from bed to wheelchair, or from wheelchairRead More →

What I am watching I have been a Chicago Fire (NBC) fan from the very beginning and the show never disappoints. I am not sure what exactly I find compelling, but it does remind me of the old 1970s shows like Emergency or even CHiPs, which I grew up on. What drew me in initially was the fact that Jesse Spencer from “House” was going to be starring in it, but after watching the very first few episodes I realized thatRead More →

Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”. He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would go to culinary school if he’s ever “cured” or if his life will be made simpler by him being able to walk and use his hands normally, which right nowRead More →