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

Courage Under Wraps Gallery Opening

September 20th was the magical day that the book ‘Courage Under Wraps’ by Jodi Champagne was displayed at a Gallery in Hollywood along with many other photographers’ works. This is the Photographic Documentary Book about the life of my son with Epidermolysis Bullosa. Here are some photos from the event. The book is available from Blurb as a print and also as a PDF and as an ebook for the iPad. The book is 142 pages and it has hundreds of photos of Nicky suffering and living with EB, from bandage changes to trips to the Doctors, hydrotherapy and iron infusions. Part of the proceedings from the book go to the EBMRF (Epidermolysis Bullosa Medical Research Foundation) http://www.ebkids.org/Read More

My Radio Interview & Other Musings

As some of you may know, I’ve been a rather active advocate for EB, or, rather, Epidermolysis Bullosa, my son’s skin disorder, since he was born. I am in the process of writing my book, Butterfly Child, which is the story of my son’s life with EB and I am also using my writing as self therapy. In an essence, I am writing to put his life and his care into prospective, what have I learned? What is the purpose of all of this? What was the toughest lesson and the biggest ha-ha moment? The book will be out in late 2014, but in the meantime, I was interviewed by It Matters Radio to raise EB Awareness, myRead More

Nicky’s Left Hand – Before and After Surgery

Hello friends, family and everyone interested in seeing how Nicky’s left hand surgery went! I finally have time to do this blog post… Here Goes! This photo below is a photo of his hand BEFORE surgery. It shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. Here’s the hand POST surgery, he has a pinky now! Yey!!! The reason why Nicky wanted his pinky ‘fished out’ was not because he needed it for anything, but the problem with it being webbed inside the hand was that it made it impossible for him to move his wrist much without a considerable amount of pain. OK, now, on to his thumb: Below is a pictureRead More

Courage Under Wraps

Well, it’s official!! “Courage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure. While the book is already available online, there will be a “Book Release Event” on September 20th, 2013 in Los Angeles to which anyone is welcome to come. It will take place at the Julia Dean Gallery at 7555 Seward Street at 7pm. My son and I will be there. This particular book is a Photo Documentary by my friend photographer Jodi Champagne of what Nicky’s life is like, from the moment he wakesRead More

A Tale of Two Books

There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose was at the time, it’s hard to explain in a few words what it means to raise a child in constant pain, whose condition is considered terminal, a condition whose the medical community is oblivious about and whose insurance companies discriminated against from the very beginning. When Nicky was born 16 years ago, I felt helpless and hopeless. I was told Nicky would never see his first birthday.Read More

Nicky’s left hand

I just wanted to make a quick post about Nicky’s left hand and show a couple of pictures.             This is Nicky’s left hand. This particular photo shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. The index, middle and ring finger are a bit curled, but they function well and he wants nothing done to them, they’ve been holding pretty much this position since the last surgery in 2002 thanks to the wrapping.   This second photo to the left shows his thumb, which is very ‘in’ the palm, preventing him to use his hand to pick up things or play videogames well, which isRead More

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