Please Watch!

Just a quick post! Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 Post Views: 166

You Know You’re An EB Mom When… & What I Need You To Know

I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation. Here’s what my life it’s like from my prospective. You Know You’re An EB mom When…  When you know more than the real doctors do about your child. When you consider internet friends you’ve never met to be some of your best friends. When you think it’s a good day if you don’t see any blood. When you get asked at least once a week if you are a nurse. When your two-year-oldRead More

You Can Thank Me Later

On my last post I talked about Insurance Companies and the hell they put me through the past 17+ years. I also explained why they bother me so much-the endless bills they do not pay or refuse to pay when they should, my two bankruptcies, and the simple fact that they are making our life harder than it already is. Having a medically fragile child is not for the meek, you have to be prepared to do and fight things on a normal basis that make you more a nurse than a caring, loving mother. We have to do things no mother should have to do. All I should do is hug my child, soothe, explain and love,Read More

Let Me Tell Thee How Much I Loathe Medical Insurance Companies

Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment withRead More

My Boys, Reflections & Realities

I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. Just the fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age. But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic thatRead More

Under the Bandages

As many of you know, I don’t post photos of Nicky’s wounds on Facebook because they’ve been deleted many times because people “report’ them. I’ve been blocked and my account has even been suspended by my intent to simply show what EB is. People are disturbing and can be quite mean-to say the least. I don’t deal with that well. This is deeply, DEEPLY personal to me. My intent is not to shock or exploit, I would like nothing better to fade into obscurity and live my life as I like and see fit, but my child suffers daily and I can’t make it go away. My wish is to educate and spread the word that this isRead More

Apples & Oranges

I feel the need to vent this morning, so thank you for letting me do that! OK, here goes. A few months ago I posted a blog on the EB Info World website about the crazy notion that Every EB patient is different. I was inspired to write that blog when several well meaning young adults with the same form of EB my son has just could not understand why Nicky could not walk, why he was bandaged so much, and why his skin was different than theirs, even with the same diagnosis. That blog explained my experiences and understanding of how different each patient truly is. Dismissing the fact that every EB patient is different and throwingRead More

Thank You for Caring <3

I must admit, it’s not easy for me to post photos of Nicky’s wounds. When I do, I put them here on my blog so there is no chance of them getting deleted by some jerk who thinks I am exploiting my child. When this happens, and I was called this just recently, I am deeply hurt. Then again, these people who are so quick to judge, don’t have a rare disease nobody cares or knows anything about. I have to say I am developing a thick skin about people’s judgement. Long gone are the days where I could not sleep because of someone’s words cutting me deep. They still hurt, but I have to put it allRead More

Here’s to a 2014 where Love prevails

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, livingRead More

My Kindle eBook ‘Losing Alex’ FREE until Christmas Day :-)

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 aboutRead More

No, I am not Latina ;-) & misc. EB stuff

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 veryRead More

Opening Eyes & Hearts

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 orRead More

It’s All About The “Vibe” & Italian Musings

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 andRead More

The Good & The Bad

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 theRead More

You Will Not Be Forgotten

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 IRead More

Nicky’s Left Leg & The Deal With Walking

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 onRead More

Beautiful You!

In my quest to collect quotes for my Facebook Page where I share them (I’ve always been a quote freak!), I’ve come through a lot of wisdoms over the years that make me stop and think for a second. None come closer to my heart than those that urge you to be you, you, beautiful you, and to never, ever compare yourself to others. That is a fine and an inspiring statement, but what happens when it’s people in your life that compare you to others? That happened a lot to me growing up and that’s why I find these statements compelling. A few examples are in order. My older sister and I have always been extremely close, butRead More

What Do I Do All Day?

I have to be honest. I am tired. I read an article this morning from Matt Walsh defending Stay-at-home-moms and it hit home so hard it really made me think. We do get the short end of the stick. We do the most important work, we take care of the future generation, and somehow we’re envisioned as lazy. I don’t get it. What do I do all day? Let me count the ways. 1. I am a Taxi-Driver. I drop off and pick up BOTH of my children to and from school. For Connor, this is every single day. For Nicky twice a week, and this include assembling and disassembling his power-chair. We do not have a van,Read More

Courage Under Wraps Gallery Opening

September 20th was the magical day that the book ‘Courage Under Wraps’ by Jodi Champagne was displayed at a Gallery in Hollywood along with many other photographers’ works. This is the Photographic Documentary Book about the life of my son with Epidermolysis Bullosa. Here are some photos from the event. The book is available from Blurb as a print and also as a PDF and as an ebook for the iPad. The book is 142 pages and it has hundreds of photos of Nicky suffering and living with EB, from bandage changes to trips to the Doctors, hydrotherapy and iron infusions. Part of the proceedings from the book go to the EBMRF (Epidermolysis Bullosa Medical Research Foundation) http://www.ebkids.org/Read More

My Radio Interview & Other Musings

As some of you may know, I’ve been a rather active advocate for EB, or, rather, Epidermolysis Bullosa, my son’s skin disorder, since he was born. I am in the process of writing my book, Butterfly Child, which is the story of my son’s life with EB and I am also using my writing as self therapy. In an essence, I am writing to put his life and his care into prospective, what have I learned? What is the purpose of all of this? What was the toughest lesson and the biggest ha-ha moment? The book will be out in late 2014, but in the meantime, I was interviewed by It Matters Radio to raise EB Awareness, myRead More

Nicky’s Left Hand – Before and After Surgery

Hello friends, family and everyone interested in seeing how Nicky’s left hand surgery went! I finally have time to do this blog post… Here Goes! This photo below is a photo of his hand BEFORE surgery. It shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. Here’s the hand POST surgery, he has a pinky now! Yey!!! The reason why Nicky wanted his pinky ‘fished out’ was not because he needed it for anything, but the problem with it being webbed inside the hand was that it made it impossible for him to move his wrist much without a considerable amount of pain. OK, now, on to his thumb: Below is a pictureRead More

Courage Under Wraps

Well, it’s official!! “Courage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure. While the book is already available online, there will be a “Book Release Event” on September 20th, 2013 in Los Angeles to which anyone is welcome to come. It will take place at the Julia Dean Gallery at 7555 Seward Street at 7pm. My son and I will be there. This particular book is a Photo Documentary by my friend photographer Jodi Champagne of what Nicky’s life is like, from the moment he wakesRead More

A Tale of Two Books

There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose was at the time, it’s hard to explain in a few words what it means to raise a child in constant pain, whose condition is considered terminal, a condition whose the medical community is oblivious about and whose insurance companies discriminated against from the very beginning. When Nicky was born 16 years ago, I felt helpless and hopeless. I was told Nicky would never see his first birthday.Read More

Nicky’s left hand

I just wanted to make a quick post about Nicky’s left hand and show a couple of pictures.             This is Nicky’s left hand. This particular photo shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. The index, middle and ring finger are a bit curled, but they function well and he wants nothing done to them, they’ve been holding pretty much this position since the last surgery in 2002 thanks to the wrapping.   This second photo to the left shows his thumb, which is very ‘in’ the palm, preventing him to use his hand to pick up things or play videogames well, which isRead More