Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. When Nicky was only a wee bit lad (I am watching too much British/Scottish period drama, I am starting to speak like them!), I noticed that swallowing was particularly difficult. So difficult, in fact that it would take him a few hours to finish a bottle. By the time he was 3 years old, I needed to put a towel over his pillow because overnight he would soak it with his own saliva. Solid foods, or even mushy/baby foods had become an impossibility from the time he threwRead More →

Fighting for the rights of the disabled has been a big cause of mine since Nicky was born. Anything related to him not only to have the basic EB supplies, but for wheelchair access, awareness and the like. I fought really hard for some of these things, and most of them didn’t come easy at all as some of you that read my book Butterfly Child know only too well. To say that I was made to feel like a leech or a burden on society is a gross understatement. Not “everyone” matters is a message I got, loud and clear. Having said that, this fight that I’ve pressed on for my son to have the same rights and care as anyone else, is not a fight that is unheard of in our society. Many people feel that same sense of inferiority for something they didn’t choose. People don’t chooseRead More →

There are days where I feel I cannot see one more blister, one more sore area that won’t heal. But, what do I do? Run away? I’m the mom, I can’t leave. I am the only person this child has, and honestly, I love him so much, they would have to take me away kicking and screaming. ~Silvia Corradin from the book “Special Mommy Chronicles”   Post Views: 673Read More →

Nicky in Kindergarten, late 2001 – Kindergarten was only “half day” so school started a little after 8am and ended at 11am. The teacher suggested him coming in on Tuesday/Thursday only to get used to it, and if he could handle it, then he could come every day. This was all fine and dandy, but how was I going to just “drop him off”? I had written an extensive sheet of “what to do in case…” for the teacher and the staff, but still, nobody here knew anything about EB, so I resolved this issue by starting to go to school with him and kind of “hang out” in the background, helping him if he needed me. The school later hired an Aide to be with him. This was the first time since Nicky was born that I actually dropped him off anywhere and felt good about it! Of courseRead More →

This past holiday season I was in a truly morose mood, but just this past week I talked to someone that gave me a heads up… how we are the creators of our own joy. “You are the one that has to create joy in your life” he said, and then followed them with examples… trips, events and the like. I had to think about that for a moment, a day, a week. I’ve always been the one that creates “moments” in my family’s life, but it’s difficult to think of “fun” things to do with my son. He never wants to go anywhere because it’s so hard or it’s too hot and It’s difficult to create moments when the only thing that comes to mind is an amusement park, or a museum or a national park, which means lots of walking, traveling great distances and many transfers which NIcky hates. Besides, NickyRead More →

I found this website a while back (http://thetruesize.com/) where you could overimpose the size of one country with another, so I took my beloved Italy and put it over California just to get an idea… It wasn’t a big surprise to me to find out the length of Italy is fairly comparable to the length of California. Italy is long~! I am often asked how different is living in the US compared to living in Italy… actually the most common question is “which one is better”, and I am always at odds answering that question because it’s not really a matter of “what’s better”, since each have their good and their bad, a lot has to do with the culture, what one is used to. Neither one is better, neither one is worse, they are just different. Having said that, I can tell you that we are far more alike than weRead More →

So, 2017 is upon us and we’re back to the usual routines. I was looking at my calendar for upcoming appointments and I noticed I have one with my Psychiatrist on Monday as I do once every 3 months to update my anti-depressant meds and I thought that maybe this time I might take him up on talking to the therapist as he suggested if I ever felt the need to. Why? I am not really sure. On one hand I feel fine, on the other, I feel as if I am losing the “jest” for life. This was the first Christmas that I took forever to put up the Christmas tree or the nativity scene… I didn’t even sent all my Christmas Cards out. I barely took any photos at all and for the first time, “New Year” came with a dread instead of celebration. I feel like myRead More →