Return To Zero – My Story

I know for many, the death of a child, an infant, the loss of a pregnancy is unthinkable. Unfortunately for many, it is a reality. After I lost my first baby, Alex, at full term, I was shocked to find out how many women suffered such loss-the latest estimates state there are at least 100 stillborn babies in the United Stated every single day. Yet, it’s a loss that nobody talks about. Here’s an excerpt from my book “Losing Alex” (available at Amazon) where I explain how hard it was for me to find any book that talked about this kind of loss: “This was 1995; the internet was not what it is today. ‘Online’ shopping was stillRead More

Nicky’s Pastry Chef Dream Comes True!

Nicky’s dream has always been one of being a Pastry Chef… years ago, when he was about 10 years old, while flipping the TV channels, he came about a show on the Food Network when a sweet old lady (as he tells the story) was making soup. I think it may have been Paula Deen, not sure! He said it looked delicious, and he started following her show. He became enamored with all the sweets she made and shortly thereafter the show ‘Unwrapped’ became his favorite. This was very bizarre in a way, since Nicky could not swallow much, let alone eat a whole lot. He has had a g-tube to supply nutrition to him since he wasRead More

My Gift To You

Happy Mother’s Day everyone! In honor of all Mothers who had to give their children back, and 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 for a few days. Here’s the Link —> Losing Alex <— (or you can click on the cover image) If you do not have a kindle it’s OK, there are free kindle reading apps for smartphones, tablets, PCs/Macs and even a free kindle reader app for your browser. http://www.amazon.com/gp/feature.html?docId=1000493771 Love & Light and Happy Mother’s Day! Post Views: 26 Comments

Special Siblings & Social Graces

I was just thinking last night how sweet and compassionate Connor is with Nicky. He is very patient while I spend an hour almost daily helping Nicky with his homework, about two hours every night changing bandages, about 45 minutes at night putting Nicky to bed, and another 45 minutes in the morning to get him up for the day. I have to help Nicky to get dressed, to the bathroom, I have to get him water, pain meds and the list goes on and on. I was a little frustrated the other morning and didn’t hear Nicky throwing up and Connor came in to hug me and to let me know he gave Nicky some water andRead More

Here’s The Latest…

Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from going #2. It’s always something. I promise to do a blog at Caringbridge about our trip to Stanford sometime this week-I can never find the time. This is the only morning I have this whole week to do ‘stuff’ and all I did is take care of this blog while I helped Nicky doing various things. Which is why my poor book is written in 15 minutes hereRead More

EB Awareness

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help. Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until aRead More

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: 48 Comments

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