Dear Blisters, Please Go Away…

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit of 100 photos per blog. So if it’s a post that involves photos I do it here. Yes, I could do it on Facebook, but I refuse. Facebook has deleted way too many EB wound photos and even blockedRead More

God would not give me more than I can handle… or would he?

We are told this often, all the time. Constantly. Aren’t we? No matter what happens, we’re supposed to handle it, no matter how horrible, how difficult, how incredibly hard. Buckle up! Just handle it, God knows best. I used to like this statement a lot, and found it helpful and I still do to a certain extent, but my 100% belief in it was tested and analyzed in depth once I found out the life story of my great-aunt Maria, the sister of my grandfather, my dad’s dad. What happened in Maria’s life that was so horrid, so difficult that she could not handle you may ask? I am about to tell you. Brace yourself. But first, IRead More

Thank You

One of my favorite movies of all time is Frank Capra’s 1946 film It’s a Wonderful Life. Even as a child, I would watch parts of it over and over again and be mesmerized by the story, full of lessons for everyone. I am excited that I will be able to sit down once again this Christmas and enjoy it again, and yes, a box of Kleenex will be nearby for the tears that would undoubtedly roll down my cheeks when George Bailey kisses that stairwell knob, rediscovers Zuzu’s petals, and his brother flies in a blizzard to help him while his friends bring money to raise funds so he won’t go to jail. “A toast to my big brotherRead More

Happy 16th Birthday Nicky!

If I had to pick the most challenging year of my life, besides the year I spent crying after Alex died, it would have to be Nicky’s first year. Hands down. I know. It’s apples and oranges. The year I spent crying over Alex’s death is completely different than the year I spent adoring and caring for my little guy. It was wonderful to finally be a mom, but the challenges I faced were so compelling, at times I wonder how I faced them all without my family’s help. As a matter of fact, I had no help for the most part. My mom, bless her heart, and thank my lucky stars, was there when Nicky was bornRead More

Finding out who your friends REALLY are…

If there is one thing my parents (seen here in a photo shortly after their wedding in 1957) instilled in me at a young age is to be weary of friends. My mom and dad didn’t have many friends, but those they did have were really, really great; however, to sort out the gems from the fakes was not an easy task. Both of them had told me stories about how they were hurt by friends in many different ways. Also, just because someone is related to you, it does not mean they care. My mom’s brother and his children are a prime example of this. I even tried over the years to establish a line of communicationRead More

Nicky: Living with EB project

As some of you may or may not know, my son Nicholas was born with a rare and incredibly painful skin disorder called Epidermolysis Bullosa, the Recessive Dystrophic form. He will be 16 years old in a couple of weeks. A photographer, a dear friend that I met at the College I am attending, wants to make a difference and help the cause, we need a cure and we need it NOW! She started photographing Nicky’s life and him living with EB in an effort to make a difference. This is a project that may take months to finish. She is photographing Nicky’s bandage changes, him at school, at the doctor, at the hospital and in whatever situationRead More

EB Awareness Week 2012

I always found it ironic that the last day of EB Awareness Week falls on Halloween Day. After all, for many EB Children and Adults, being covered in gauze is a daily routine, not a once-a-year costume. I further wish I could say that I liked Mummy costumes or that I would ever dress myself or any my sons like that, including my son with EB, but I often felt a bit uneasy about it. No thanks. I hate gauze. Really, I mean it, I HATE gauze. Gauze to me, and more so to my son, represents that thing that we have to cover wounds with. Those nasty, painful, bloody wounds that make my son’s life miserable. They represent whatRead More

I Wanna Know *WHY*

Steel Magnolias will go down in history, along with ‘It’s a Wonderful Life’ and very few others, as a movie where there is a single scene that makes me cry… if not sob, each and every time I watch it. This scene, acted by Sally Field, It is so powerful and so well acted, I feel I am her. Of course, at the time of the movie release, I was yet to have children, and I still cried. I just could not imagine. Now, unfortunately, I can. Like MaLynne, I could jog all the way to Texas and back, but my son can’t and never could. Like MaLynne, I was left wondering WHY my son Alex had toRead More

I Heart Firenze

Have you ever had a Deja-vu? A feeling of something being so incredibly familiar that should not be at all since you never saw it before? That is Florence for me. Firenze. Even though I never once thought about it, it was the first time in my life where I started wondering about reincarnation. Not sure I believed it, but I did not know what else to think. A few years later I got the same exact feeling about Boston. Even though I’ve never been to Boston, anytime I see a postcard or a picture of Boston and the name of the city is not mentioned, I *KNOW* it’s Boston. There is no ‘wondering’ or questioning, I just know,Read More

October 15th is Pregnancy and Infant Loss Remembrance Day

In Honor of Pregnancy and Infant Loss Remembrance Day I took two beautiful images of angels and put two of my favorite poems on them. I hope you like them, I am posting these below. Original size is much bigger, simply click on the image itself to see original size. Feel free to take them and use them as you wish. God Bless,           Post Views: 423 Comments

And I thought *I* was going crazy!

I don’t know if it’s because Nicky is getting older, EB is getting restless, I am getting older or what is the culprit, but I feel as if lately my fuse has shortened quite a bit. Of course it might also have to do with the election and my unrelenting disgust at all the lies being told by one Pinocchio who flip flops every two minutes depending on who is listening. At least I can look forward to that being over in a month. All I know is that I had to stop drinking wine, or my occasional bottle of Vodka because I felt I could not cope changing my son’s bandages without it. Only now I feelRead More

New Low Price for Kindle versions!

Hello everyone, just a quick notice! The Kindle editions of BOTH Living with Epidermolysis Bullosa and Special Mommy Chronicles are now available for the NEW low price of $2.99! Click the covers below to be taken to their respective page at amazon.com      If you don’t have a kindle, the APPS are FREE for all platforms, including PC & MACs! Get it HERE!! Thank you SO MUCH!! Post Views: 16 Comments

Camp Wonder parent’s trip to Muir Woods (CA)

Every year the wonderful organizers of Camp Wonder send the parents to a trip to visit the local area of interest. We always look forward to these trips and Bill is such a gifted travel guide! Over the past few years, Bill has taken us to a trip to Napa… …a wonderful excursion in San Francisco… …an amazing trip to Monterey and Carmel… …and just as if we can’t think of where we could possibly go next that is at a reasonable distance, Mr. Bill takes us to Muir Woods, an amazing place I never knew existed! Afterwards we had a great lunch at the Marina and even went to take some amazing photos of the Golden GateRead More

Misinformed and Uncompassionate

There seem to be a trend going on nowadays that it’s really quite disturbing. I am unsure where these people are getting their information they so sternly believe or if a lie is perpetrated that it’s shared without anyone checking to make sure it’s “true”, but it’s truly a slap in the face to those that research the truth at every turn and really know what is going on and that indeed have all the facts at hand. Yes, I am talking about politics, but in general, it speaks about our society at large as well. Maybe it’s because I didn’t grow up with a computer at my fingertips in the late 70s and early 80s, but there was always a place, especiallyRead More

Should it bother me?

I have to admit it. Through my trials of the past nearly 18 years, not much seems to bother me anymore. I am amazed at the thick skin (pun intended) I’ve developed over the years. I chuckle daily at the things people complain about on Facebook or other social networks, and I know I learned a lot and have come a long way from the teenage girl whose ego was easily bruised. I strive to be the gal who does not care about what people think, what people do, how people behave, but when it comes to my children, some things I just can’t shrug off so easily. But maybe, when it comes to my children, it shouldRead More

Special Mommy Chronicles

This is my book!! It’s basically a compilation of columns I wrote in the early to mid 2000s. “Special Mommy Chronicles” was a featured site in Exceptional Parent Magazine‘s February 2003 issue. It was also featured as an on-going column in the Mahoning Valley Parent Magazine of Ohio from April 2003 to September 2004. Over twenty websites, such as Contemporary Moms, Bridges for Kids and About.com, linked to a column on their front page or posted specific Special Mommy Chronicles Columns/Articles on their website. Here is an image of one of the columns/articles printed in the magazine “Stress Free Living” of April 2003, and check out the image of another one of the column/articles published in the “Parent Paper”Read More

Oh yeah… I am soooo lazy!

I was asked once why I do not use my personal blog to talk about my son or EB, as others do. The answer is a very personal one and a respectful one. I want to keep everything separate. My life is such a roller coaster right now, and has been for nearly two decades, that if I don’t keep my thoughts straight, I might lose my mind. I keep a blog about Nicky, where on occasion I always talk about my husband’s health at Caringbridge (http://www.caringbridge.org/visit/nickyz), and I talk endlessly about EB at my Blog at the EB Info World website (http://blog.ebinfoworld.com/). I even keep a blog about my photography and graphic design (http://blog.sleepingangel.com/). But this BlogRead More

Zia Caterina

If there was one person in my family that I’ve always admired is my aunt (zia) Caterina. Caterina was actually my great-aunt, as she was my grandma’s little sister. Even though we did not live close by, my dad, who absolutely adored her, made sure we took the time to visit her at least once a year. Why was she so special? Mainly because she suffered a great deal, which made her one of the most compassionate and kind people around. Not only she suffered traumatic injuries when she was a pre-teen, during WW1, she used the little disability money she received to help her family and then the family of her brother-who died young and left aRead More

It’s All Make Believe, Isn’t It?

Marilyn Monroe was right in this, one of her favorite quotes. It’s all make believe. It truly is! I was grocery shopping just yesterday and one of those gossip magazines caught my eye… ‘stars without makeup’. I never buy gossip rags, but I do make an exception when we get to see the stars, the stars everyone tries to imitate because they seem to be so perfect, so flawless, so amazingly beautiful, being, well, so amazingly human! Yes, I bought it. Guilty as charged. I do buy the ‘worse beach bodies’ issues as well. Why? Because then I feel normal, away from the celebrity culture where the woman’s ‘perfect’ body mimics the one of an escapee from a nazi concentration camp.Read More

A Nail Biting Tale

After several months of not going to the Beauty Salon to get my ‘full set’ done I noticed yesterday that my hands were disastrous. Not only they looked like I was a farmer, I have that annoying habit of chewing the skin around it too, so there was blood around it and, frankly, they hurt. Not again!! My husband always tells me I have a non-addictive personality and a few friends have commented on that as well, but there is one thing that I cannot stop and it is biting my nails when I stress out. That’s right, I don’t reach for that Oreo Cookie or pour myself several glasses of Tequila shots, nor I feel the needRead More

Nicky & EB. What it is, how he’s doing.

I wrote this as a Facebook/MySpace/Blogspot post a couple of years ago-I tweaked it and updated it a bit but I felt this information is worth sharing and keeping ‘out there’ so to speak. There are quite a few family and friends, including some I’ve reconnected with recently, or within the past couple of years who are not sure what Nicky has or what’s going on with his health, so I figured I’d clue everyone in because in the coming years I will need your support more than ever. In a nutshell, Nicky was born with a skin disorder that falls under the umbrella of Epidermolysis Bullosa, a fancy Latin term meaning Blistering of the Epidermis. There areRead More

Choosing Gratitude

The day before the tragic events of 9/11, my family nearly avoided a tragedy as well. My mom was recovered at a hospital in Italy and she was not doing good. In the next few days we almost lost her. She started bleeding heavily in the middle of the night and she became unconscious. By the grace of God, a Nurse checked in on her in the nick of time and found her in a pool of blood. The amazing Italian Doctors worked feavereshly to save her, they even got drugs from the US to get her better, she would stay in the hospital 2 months before going home. I was emotional to say the least about theRead More

Aren’t we ALL cousins?

About a year ago, when Prince William married Kate Middleton, I ran across an article that stated that the pair were actually 12th cousins, once removed. I was amused. Wow! Being an avid genealogist I think that these findings are quite remarkable. 12th cousins once removed, means the genealogists that researched their ancestries had to go back roughly 12-13 generations to find the common ancestor. Not a hard find since royal roots are well documented. We always hear of these sort of things, I read in another article that President Obama was 9th cousin with Brad Pitt and Hillary Clinton and Angelina Jolie were 9th cousin twice removed. What is this ‘removed’ business you may ask? It’s generational.Read More

What is the American Dream anyway?

“Everywhere around the world, they are coming to America”… that’s the words of a song  by Neil Diamond which always pulled at my heartstrings. America always enticed me, and while I never planned to live here per se, the idea of adventure, success and fun was always synonymous to it. I grew up in Europe, Italy to be exact. I never realized how different growing up there was until I now compare my son’s childhood in the US with my nieces and nephew back in Italy. There is no comparison. Apples and Oranges.  I can’t even say that one is better than the other, it all depends on what is important to you. Having lived in both places, I haveRead More