I just started listening to an audio-book today by Rhonda Byrne called ‘The Power’ and it’s truly helping me start the New Year in a more loving note. Truly, the more I live the more I realize the power of Love is life changing, but I never realized how much. Thinking positive, believing in the impossible has changed my life in ways I cannot even start to explain. It all started in the most unlikely of ways, in late 2001. At the time, I was upset, negative, argumentative, depressed, not in the best of places. You would not have liked me at all, and many people didn’t and were not afraid to tell me so. I was divorced, living alone with my son Nicky which had one of the most severe forms of EB, with my family half a world away, without any help and with only myself to rely on.Read More →

Merry Christmas everyone! As my way of paying it forward and my gift to all of you, I am offering my book ‘Losing Alex’ for the kindle for FREE until Christmas day! Click here to go to Amazon… (a new window will open) or click on the cover of the book on the left. This is the book I wrote in an effort to share some light of what is like to lose a baby at birth, which, even in this day and age is still considered an invisible loss. Parents struggle with anger, guilt, and despair, often alone. I wrote Alex’s story (quite lengthy in its own right) as the beginning of the book I am writing about the life of my son Nicholas, who was born 21 months after Alex was stillborn and diagnosed at birth with an incurable and possibly lethal skin disorder called Epidermolysis Bullosa. This book,Read More →

Good Morning to all my friends. I feel a little chatty this morning, so please indulge me! One of the most interesting assumptions people have about me because I live in the Southwest part of the United States with my name spelled with a ‘i’ instead of the English-ized version of Silvia with a y (Sylvia) is how I must be either Latina or at the very least I must be able to speak Spanish. When I tell them I am Italian I am invariably told that Silvia is a Spanish name. Actually… that is not true. Not only I am Italian, my name is also. Wikipedia lists my name originally as Italian, and it’s also a very old name. In Roman Mythology, Rhea Silvia was the mother of twins Romulus and Remus, who founded Rome 2766 years ago (753 BC). Saint Silvia was the mother of Pope Gregory IRead More →

One of the most frustrating parts of having a child with EB is that I often felt as if I was abandoned. Not only abandoned because I had nobody to help me with his extreme needs, but abandoned by society in general. So much is available for families that have children with more common conditions, but I always felt EB felt through the cracks due to the rarity of the disorder. This excerpt from my upcoming book ‘Butterfly Child‘, due out in late 2014, speaks to this sentiment…      One of the other EB moms I knew called me one day to ask me a question I never once thought of: “Did your Insurance, Social Services or any other organization or entity come to the hospital when I had Nicky offering me services or anything to help me take care of Nicky?” The answer was, of course, “No”. She hadn’t eitherRead More →

One particularly amusing thing about being able to call two countries my ‘home’ (Italy & the US) is that at times I don’t feel neither is, that I am this weird mutant, where I don’t belong in either, yet I feel both are my homes. How can that be? I was in a grocery store in Italy with my sister and her 3 month old little girl a couple of years ago, I had my camera with me and while chatting with her, when I saw these cakes in the bakery department, I took a picture of these delicacies without thinking I was doing anything ‘wrong’. A few minutes later this girl came out of the bakery and followed us into an isle and came up to me and told me ‘No pictures please, no pictures’. I told her “OK, Sorry!” and it wasn’t until she left that it dawnedRead More →

I wanted to take a moment to thank everyone that left very sweet comments on my Caringbridge post (dated November 2013). The guestbook does not give me an option to reply, so, to all that did leave me sweet messages, thank you. In time of need I know I have friends that really care and that means a lot to me, so, THANK YOU! OK, since yesterday afternoon there are GOOD news and BAD news. I will start with the bad. 🙁 This is a photo I took of Nicky last night. He was *very* upset. We ran out of his ‘itchy medicine’ a few days ago and the Doctor is taking their sweet time to fax the refill to the pharmacy, so now he’s scratching himself to death. What you see here is his left leg’s enormous blister in the middle of the leg hanging that pretty much wentRead More →

Yesterday, being Veteran’s Day, I reflected. I thanked my husband for his service, thought of my sweet ex-FIL, who suffered greatly in Vietnam, thought of my grandfather who fought in both World Wars (that’s him on the right in this photo in 1918, at the end of WW1) and everyone else in my family that served in the various wars at one time or another, my cousins, my uncle, and grandfather’s brothers and their children. I am not sure if it’s my passion for genealogy, my sweet memories of meeting my grandparent’s siblings and their families when I was young, or simply the realization, being far away from my own family, how important ‘family’ really is, but I find stories relating to the struggles of generation’s past absolutely fascinating. In some way, it helps in my daily struggle taking care of Nicky, being thankful for what I have. For example,Read More →

As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to rehab, something he sooooo does not want to do (you can read about that at his CaringBridge Journal October entry). He wanted me to post these pictures to show what he’s dealing with. Let me give everyone a brief summary of what’s been going on with his legs and walking since he was born. I will try to keep it short, promise! Nicky didn’t start walking well on his own until he was 2 years old. I always marveled how his feet rarely got blisters, the skin looked different, tougher, for some reason. When he started going to school heRead More →