Nicky’s Wish

OK, so this blog is a lot longer than I intended to… but how do you sum  up the time of your life? This is a trip we’ll never forget. Thanks to everyone that made it possible! As many may imagine, Nicky’s life is full of pain. Medications to alleviate pain, to soothe the skin, to help bowel movements and to relieve itching are only a part of the puzzle. There are the nightly bandage changes, the difficulties of walking due to his wounded feet, and the nightly g-tube feedings. Everything is difficult. Everything is a challenge. Then, of course, there is school, Doctor’s appointments, Iron infusions, trips to CHLA… and the list goes on. How do youRead More

Just Smile!

I had a great friend yesterday ask me if I could write a blog about how people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do? I must say, I had to think about this one. Truth be told, being a special need mom can be isolating, lonely.  No one knows what to say to me.  I feel a distance, a disconnect from just about everyone because I know that they don’t know what this feels like and they just can’t relate. I have family members who have not spoken to me in yearsRead More

Live, Learn and Move On…

A few years ago I was presented with a situation that was hard to digest. As I describe in detail in my book Losing Alex, a group of what I can only describe as ‘evil people’ had targeted me big time. Since my website showed me the referring links (basically how they found me… was it google, yahoo, or a link from another website) I was able to find this horrific bulletin board, a group of truly disgusting individuals from all over the world who had great fun sending horrific messages to grieving mothers. I tried to fight back and call them out at first but in turn they only got uglier and nastier (and nasty does notRead More

Nobody Knows Your Child Like You Do!

I was deep into reading a wonderful book wrote by a local mother whose daughter had brain cancer and something she said hit me like a ton of bricks. And not in a good way. Without admittedly doing any research on her own, or talking with other parents in similar situations or consulting with any other Doctor, she put her daughter’s life in the hands of just one Doctor. When he turned out to be wrong, the unthinkable happened, and only a few months later her daughter died in her arms. Perhaps is the rarity of EB, or the fact that I am yet to find another patient who is like Nicky (similar.. yes, like him, no) orRead More

To Accept Or Not To Accept, This Is The Question.

Last night I came across an old blog of mine circa 2001, and the words I spoke on that blog are as true today as they were back then. I am not sure if I am sad that my attitude has not changed, or happy to know I was right in feeling the way I did so long ago. I wrote this a little over a month after Nicky had a throat dilatation that, for a couple of days, the doctors thought it went terribly wrong. They feared they had perforated his esophagus. In the end they didn’t, but I was in *hell* for a couple of days. Here is what I posted: “monday, august 6. 2001 IRead More

Who Is Going To Take Care Of Us?

My 9 year old kind of shocked me today, but in a good way. Last Friday he attended my College Graduation and he waited until today, when I went to help out at his ‘Unity Games’ to ask me this: “Now that you don’t have to go to school anymore, when are you going to get a job?”. “Funny you should ask” I mused back. I was laying out my plans to do just that either this fall when you go back to school, or after Nicky graduates High School next spring.” “What are you going to do?” he asked. To that I replied I hoped to be teaching Web Design either at the College or elsewhere (amongRead More

Still?

In 9 days one of my biggest dreams will come true… I will graduate from College with a Double Degree in two areas I adore, Graphic Design and Digital Imaging. I will be official in being what makes me, ME. It’s a huge accomplishment.  I will relish that moment and that joy, knowing, deep inside, something is missing. While I am very proud of what I was able to do, which was very hard at times to even have the luxury to attend classes, I can’t help but remember that this year, 2013, should not have been about me or my graduation at all, it should have been Alex’s. I will always have that feeling of ‘something isRead More

There Is Always A Bright Side

When working at Target several years ago as a cashier, a couple came in to buy a large pack of diapers and as they were checking out they told me, in a sarcastic and bothered kind of way, how they could not believe they were still buying diapers for their 7 year old daughter. I asked about their daughter and they told me she had some issues with some sort of disability, and I told them not to feel too bad because I was still buying diapers for my 11 year old son and that I would be buying them forever. “Oh”, they said, all of a sudden being grateful that their daughter’s issues were just temporary. I’veRead More

If I Knew Then What I Know Now…

I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for certain be better off today. No doubt about it. I can’t even begin to describe the horrible shape I was in when Nicky was born. I am writing about it in my book and I shake my head in disbelief. The various Insurance companies refused to cover bandages for over a decade. The bandages themselves were… sad. All we had to work withRead More

Wound Pics

I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months. For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was a mere month old he was further diagnosed via skin biopsy with a rather severe form of this condition called ‘Recessive Dystrophic’ (RDEB), one of the rarest, more severe and more lethal forms. How rare? How severe? How lethal? According to the latest statistics, about 3 babies in a million are born with RDEB. Both parents have to be ‘carriers’ (and do not have the condition) and asRead More

All We Need Is Love

Just the other day I ran across an article on Redbook magazine asking “Would your friends be there for you in a Health Crisis” that made me stop cold. As I read it, I was nodding. Oh yes, I’ve been there. You see, as I explained, or at least tried to explain in my book ‘Losing Alex‘, I was completely unprepared for the heartfelt amount of support-and the enormous lack of it after the unimaginable happened and I had to bury my first born. Then, when my son Nicky was born with a horrid disorder and the Doctors gave him a year to live, it seems as if everyone disappeared. Everyone. Well, maybe not everyone, but it sure felt like it.Read More

Clearly!

The more I live, the more I realize I am not living a normal life. Far from it. Clearly I have no idea what “normal” even is anymore. What is normal? Is anyone’s life “normal” anyway? It does seem as if many are living an “ideal life”, so to me, that spells normal, everyone around them or in their family is healthy and happy, they have good jobs and perhaps they should be happy but many, unfortunately, aren’t. These unfortunate souls apparently have no idea how lucky they are because all they do is complain about the most trivial things ever, and when they don’t complain about trivial stuff, they become almost mean, demonizing the poor, the weak,Read More

Sometimes I Wonder…

This past week something happened that caught me by surprise. A new Pope was voted in by the World’s Cardinals and their decision brought me to tears. You see… I am not a hugely religious person. As a matter of fact, the last time I entered a church, was this gorgeous 300 year old cathedral called St. Martino in Sottomarina di Chioggia near Venice (Italy) last summer. Inside it was breathtaking. So much so that Connor, my 9 year old, inspired by its beauty, started telling me that he was going to ask God to cure Nicky every day. Now, that made me cry. I grew up catholic, truly there isn’t much of a choice in Italy, youRead More

Imagine…

Imagine… for a moment, being so thrilled about finally having that baby you longed for so long. This is 21 months after the unimaginable happened, when you had to bury your first baby, being told, in a little room in a hospital, that your second newborn would most likely not reach his first birthday. Imagine being told that there is no cure, no treatment, all you have to do is instantly be transformed into a nurse, insurance not paying for the expensive bandages needed to care for this child, and all you can do is wait for the inevitable to happen with no hope. That was me on November 26th, 1996, the day after my son Nicky wasRead More

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