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 wheelchair to car seat etc, but he often gets blisters just from doing that. This means he’s confined to a wheelchair, and due to his skin fragility, he cannot do many things besides watching TV or playing video games. Something that I do for Nicky for fun is take him to see a live taping of TV shows. We’ve seen several over the years, and this is something that’s a lotRead 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 that Taylor Kinney was an even bigger eye candy for me. “Mamma needs her eye candy” is what I tell my boys all the time, ha ha. This is one of the very few shows that I watch immediately as it airs, which I rarely do nowadays for any show. I normally tape everything and watch it “whenever”. I must also say that the crew of Chicago Fire invited an EBRead 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 now is impossible. I reassured him we would “figure it out”, but as a mom, I’m dealing with a bag of emotions that are hard to describe. Someone recently was talking to me about the future for Nicky in the aspect of medical care after he’s 21 and… I don’t even know how to respond, so I don’t. The future… yes. I can’t go there. Sorry. Aside the fact that I’veRead More →