Ivrea la bella

“Ivrea la bella che le rosse torri specchia sognando a la cerulea Dora nel largo seno, fosca intorno è l’ombra di re Arduino.” I was born in Italy in an old town called Ivrea and my entire family lives there, so speaking of Ivrea is like speaking of my home, my life, my roots. While my dad’s side of the family comes from a village near Vicenza called Lusiana, my mom was born in Ivrea, my grandmother near Ivrea, my great-grandparents in Ivrea as well and so on. My roots are firmly planted here. Several years ago… 15 to be exact, I bought a rather thick book telling the ‘short story’ of Ivrea and I found it quiteRead More

Ways to go…

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002. I love to write, it’s almost  part of me toRead More

Cattle Tale

If you’ve ever driven on Interstate 5 North from Los Angeles towards San Francisco you surely passed something you could neither miss with your eyes nor your nose. As you approach the town of Coalinga you will be hard pressed to miss the thousands of cattle right off the freeway. Cows and cows, as far as the eye can see. I always thought this sight deserved a photograph (being the avid photographer that I am) and while I’ve stopped on the side of the highway to take photos before, I always meant to that that ‘exit’ to take a closer look but never did. I either missed it, or forgot about it, or didn’t have the camera… ThisRead More

Post-surgery pics

Once again I am forced to post these pics on my blog instead of, say, Facebook or caringbridge due to Facebook’s constantly deleting my wound pics and caringbridge not really giving me much space or a way to clearly display these. The detailed blog about the cast removal is here: http://www.caringbridge.org/visit/nickyz/journal Below is the hand carefully re-wrapped by the PT ladies after the cast was removed. He has a splint under to keep the wrist straight and the hand open.   Below is the hand unwrapped. The thumb may not look like it’s way out, but it’s quite a bit more out than it was, Nicky is absolutely thrilled. The index finger is not where we were hoping, but it’s better than itRead More

Nicky’s wound/hand pics

So, silly me… I wanted to have a ton of pre-surgery pics of Nicky’s hand, but I messed up. Nicky wanted his ‘left’ hand done so I took several photos of that hand, but then two weeks ago he changed his mind and decided to do the right one and I never did take good, proper pics of it. The right hand was in slighter worse shape than the left one. While the left hand still has a mostly straight index finger, the right hand did not. Beside that, both hands were in similar shape, as the thumb was webbed toward the palm of the hand and the pinky completely webbed in the hand, so much one couldRead More

Rotten Tomatoes

It’s true with anything, anywhere in the world. You give something for free for people in need and some will take absolute and complete advantage of it, making someone else suffer in turn because they are taking something away from those who desperately need it. But what do we do, take this advantage away, make stricter rules or close our eyes? Surely the rotten tomatoes of our world needs to pay consequences, but do they? Never in my experience. I always found it perplexing how something designed to specifically help children like my son, who suffer horribly every day of their lives, all of a sudden becomes ‘not available’. It’s everywhere in sight. From that healthy person takingRead More

My Non-Celebrity Ghost Story

Last year I started watching a TV show called ‘Celebrity Ghost Stories’. I know what you’re thinking, especially the skeptics, but even if only 1% of these stories are true, it’s still a compelling argument for the paranormal. The most touching story I saw belonged to an Italian-American actor called Enrico Colantoni. I teared up watching it. This show, which became a favorite of my Connor as well, gives credibility to a perplexing chain of events I briefly talked about in my other blog a couple of years ago (http://ebmom.blogspot.com/2010/01/cant-help-but-wonder.html). Sometimes the answer to the question regarding these events ‘Am I crazy?’ is a resounding YES. Others I wonder why people seem perplexed when I retell the story.Read More

You have the info… using it is YOUR choice.

When Nicky was born, 15 years ago, the Internet was not like what it is today. I know, it’s crazy to think about it, right? I used to browse ‘usenet newsgroups’ and to belong to an email group of any sort you had to send an email to a listserve to join or leave a group. There were very few websites (comparitively speaking) and not many had the internet to begin with anyway. So… it will be of little surprise when I tell you I could not find a single soul with EB or that had a child with EB. Nobody. The Doctor ‘could not tell me’ of other patients because of patient/doctor confidentiality. I was going out of my mind.Read More

The funny thing about Priorities…

This past spring I did something I’ve been wanting to do for a LONG time. I bought the software and the plugs needed so I could transfer all my old VHS tapes and Hi-8 Tapes from my camcorder to my PC so I could make DVDs out of it. I had bought my camera back in 1992, but I had borrowed my BIL’s camera (a cameraman by trade, who even worked for several TV stations) well before then, so I had several videos from the late 80s and early 90s. I didn’t realize this decision would make such impact on Nicky. To be able to see mom and dad before he was born and see videos of himselfRead More

Something to be Thankful For

With Thanksgiving just a few hours away I’ve been pondering the words of a few relatives lately, relatives that I have a hard time speaking with because joy, thankfulness and looking for the silver lining no matter how dire the situation seems to not be part of their psyche. I would be ok to listen to their complaining if it was seldom, warranted and they took my feelings into consideration, but they never do. Their wining is constant, about small stuff, they offer no support nor recognize my family’s health issues and what’s worse, if I dare say that whatever they are dealing with or dealt with is minute compared to my situation, well, I don’t dare say that. MainlyRead More

Worth Reposting

In late October 2010, a little over a year ago, I put my heart on a sleeve and vented. My opinions are not those of a politician I chose to believe, or handed down by a parent, since my parents never talked about American Politics and I had no idea how my dad felt about politics until recently; my parents live in Italy BTW. My opinion does not come from a TV channel, newsprogram or a newspaper I chose to believe. My views and opinions come from my PERSONAL experiences. It’s truly as simple as that. My life. Period. I remember vividly when Clinton became president. I couldn’t yet vote, but I wasn’t happy. I had been aRead More

Fighting Double Standards

If you’ve ever watched an episode of CSI you’ve seen gruesome stuff. You would have seen the re-enactments of a murder, how a knife or a bullett entered the victim’s body, or the doctor performing biopsies. You would have seen hearts or brains being handled, throats slashed and worms devouring a cadaver. We’ve even seen a body being swallowed by a python-and then regurgitated. It’s all good and fine when it’s for entertainment purposes, but when it comes to reality, some people draw a line. Why?? Why is it ok to show gruesome things on National TV while the wound of a child suffering from EB is considered offensive and reported as inappropriate? EB Awareness week was just uponRead More

EB Awareness Week

Nicky & Alex - 1997

The last week of October marks ‘EB Awareness Week’. It is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease. EB might be rare, there are approximately 600 patients with the same form of EB that my son has in the United States (which is the Recessive Dystrophic form), but its rarity should not deter people from helping in any way they can, even if the only thing they can do is send a tweet or post something on their Facebook wall with a link to one of the main organizations that are lookingRead More

So over the top it overflows.

There are many versions of ‘Beauty and the Beast’, but the main story remains the same. A hideous beast and a beautiful girl fall in love, and when they do it turns out the beast wasn’t a beast at all, but a handsome prince. We learn that the reason the prince was turned into a beast and every single one of the prince’s servants turned into  inanimate objects was because an enchantress, disguised as an old woman, came to his castle seeking shelter on a stormy night. When the prince refused to give her shelter, she revealed her true self and cursed the man for his shallowness by transforming him into a beast. Only true love could turn the prince backRead More

$#*! Happens…

In the 1994 film Forrest Gump (one of my favorite movies of all time, no less), during his inexplicable back and forth run across the United States, a bumper sticker salesman running alongside him points out to Forrest that he has just stepped in a pile of dog feces. When Forrest replies, “It happens”, the man replies, “What, shit?”, to which Forrest replies, “Sometimes”. I saw this movie in the theather in the summer of 1994, and while a whole lot of crazy stuff had already happened in my life, mostly due to my sense of adventure and spontaneity, I would soon find out what it really meant to experience some very serious stuff, none of which I wasRead More

150+ Free American Idol Incredimail Letters!

As promised a few months ago, here’s all the Incredimail Letters for American Idol (Seasons 1 through 8 ) that I personally made in ONE collection, ONE download! 8) CLICK HERE 4 DOWNLOAD LINK! I counted 153 roughly. These letters were on this site but since the revamp I had to take them down, so this is the easiest way for me to make them available once again to everyone. The image I made shows a bit of the preview of my work. All my other Incredimail letters (quite a few I made from 2004 to 2010) are on my website at the following URL: http://sleepingangel.com/graphics_im.htm The only ‘Thanks’ I ask is if you follow and LIKE oneRead More

My book now available for the KINDLE!!

Special Mommy Chronicles I am so excited to announce that my book  “Special Mommy Chronicles” is now available for the KINDLE for only $8.99!! Here’s the LINK! http://www.amazon.com/dp/B004VMPX3M   My publisher is also working with APPLE to get the book listed and made available for iPad users in the iBook store at iTunes.   I will be working on getting “Living with Epidermolysis Bullosa” very soon on the KINDLE as well as the publisher is also working to get that on iTunes, I should hear something about it before the end of May.   I am still working on my book about Nicky’s life with EB which is sure to raise a few eyebrows. It probably won’t beRead More

Hello World!

Hello everyone, this website used to be quite extensive but I took everything down as of today, January 23rd, 2011, since I hadn’t touched the content in nearly five years. The main pages are now up for my children, but they are scaled down extensively. Nicky was not happy about it, but it was time!! I know many loved the website and others thought it was perhaps a bit over the top, but now with the advent of Facebook the main reason for the website is gone, which was to keep in touch with my family in Europe or across the country.  There were many Incredimail letters for American Idol and the Bold & the Beautiful, which are now up onRead More