How to Help Special Need Parents

On my blog at the EB Info World website, I posted the 8 things you can do to Help Bereaved Parents, which is something I wrote for the back of the book I wrote about my son called Losing Alex, available now for the Kindle and paperback. On that note, I had written, also for the EB Info World website, a blog titled ‘Helpful Words for new EB Parents“, but I now wanted to take things a bit further. I often get asked what I need, and it may surprise you to know… it’s not much. All I need most days is to just know people care. Here’s the list I compiled, I hope it helps someone! HowRead More

A Matter of Perspective

This past Sunday, around 6pm, Nicky decided to come sit on the couch where we usually change bandages in front of the TV. I told him that I still had to finish dinner and clean up, but he said he didn’t mind, he wanted his bandages changed BAD. So bad in fact that he told me he wished we could do his ‘whole body’. I was a little stunned by this. Usually Nicky is not exactly keen on changing bandages, even at 16 I have to call him and bug him about it until he decides to come and sit down so we can get started, and we normally only do either one arm or both legs. AfterRead More

Life is About Priorities

I was watching an interview with Meredith Viera yesterday on the Dr. Oz show and she said several things that I could completely resonate with, and the one that I could relate to the most is how she felt everyone’s Life was about “Priorities”. It’s true, isn’t it? Sometimes I wonder how different my life would be now if my Alex had been born alive and healthy: Nicky would never had been born because we had no plans of having children this close apart, so the EB might have never played a part in my life at all. Truly, Alex’s stillbirth and Nicky’s birth completely changed the way I felt about motherhood, life, work, what’s important and myRead More

Babies are not supposed to die. End of story.

Ever since that dreadful, beautiful day where I held and lost my son, I felt a strong need to keep his memory alive. This was not an easy task. It was easier at first. People sent beautiful sympathy cards, flowers. Being part of a support group and speaking with other parents helped, but after having Nicky and all that his tough life entailed living with EB, it became rare. Nobody would EVER say his name nor bring him up in conversation, it was all very uncomfortable and weary. Such an unspeakable loss, unspeakable because nobody wanted to speak about it. Which is what prompted me to break the silence. That is why I wrote his story. Even before Nicky wasRead More

Losing Alex

My new book is finally out and I could not be prouder! This is truly a labor of love. Alexander Luciano “Alex” was stillborn at full term, on March 1st, 1995 @ 4:29 AM.  He actually died the day before he was due, on February 25th, 1995. He weighed 5 lb 13 oz and was 19.5 in long. At the time we were told that he died of a cord accident, but after his little brother was born with a skin disorder called Epidermolysis Bullosa (EB) it is very likely he had the same thing too. EB could have played a major part in his demise. There are no words that can accurately explain what it feels like toRead More

Thinking positive…

Those that know me, know what a quote freak I am. I draw a lot of inspiration from them and they truly help me in many ways. It all started back in 1993-I was on a flight from New York to Milan, Italy to visit my family and the gal sitting next to me was a beautiful 19 year old girl traveling solo to a modeling shoot with a teddy bear and a picture album. We struck up a conversation and she opened her little picture album to show me photos of her family members and one thing struck me. Under every photo she had written a quote. But… not any quote. Each quote pertained to the photo.Read More

Questions Answered

Ever since the photographer started taking photos of Nicky for her/our photo-documentary about living with EB, a lot of questions about his health have surfaced-I will try to answer them here to the best of my ability. 1. Is his condition considered ‘lethal’. Nicky was diagnosed at birth with Epidermolysis Bullosa, a biopsy was then taken and the result was a diagnose of his sub-type, which is ‘Recessive Dystrophic’. Of the currently known types of EB, only two are considered lethal per se: Junctional (Herlitz form) is deadly to the newborn and young. It involves the insides; small intestines, gallbladder, urethra and kidneys along with the nasal, oral, pharynx, esophagus, etc…  These babies commonly pass away within a fewRead More

Kindred Spirits

I started taking Nicky to CHLA (Children Hospital Los Angeles) in the summer of 2004 when he was 8, following my attending the EB Patient Conference in Palo Alto, where I met a rather eloquent and “well versed in EB” hematologist who opened my eyes on something Nicky was dealing with and I knew nothing about. He was severely anemic. I always gave Nicky iron orally or in his tube, but he was increasingly becoming pale and lethargic. After I met this Doctor a light bulb went off in my head. I made sure his pediatrician did blood tests to check his iron levels and she immediately referred me to him. To him! An expert in EB! IRead More

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: 621

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: 81

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