Butterfly Child

butterfly_child_cover-copysmall2As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18 year journey with my son.

I am still working on the book, and it will most likely be done by the time Nicky turns 18 in late November. At that point I will be shopping around for a publisher. I am hoping it can be available sometime in early 2015 at the latest, depending on the publisher, of course. I will keep everyone posted.

In the meantime, my simple request is to please go and like the Facebook Page I made for the book now. It includes excerpts from the book and various photos of Nicky when he was little. I truly appreciate everyone’s support and if you can, please share this page with your friends! The more support I gather, the more eager a well known publisher will be willing to take this project seriously and give it the attention it deserves.

Why a book, you may ask? For many reasons. Besides the given of awareness and to perhaps share my journey to help others in a similar situation, perhaps this book will serve as a story of life in America with an orphan condition. I am certain other rare conditions encounter similar challenges, whose story is seldom written about. From Insurance Companies refusal to cover the most basic needs for any EB patient, to the devastation I felt when Nicky was diagnosed with an incurable, rare and always-fatal skin disorder, knowing that at the time of Nicky’s birth there was no research for a cure at all. In the months and years that passed I had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything I could to keep him alive, often with very few resources, little to no help and even less information available.

Thank You for your support,

Love & Light,

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Listen To Your Heart & the Power of Music

I’d like to think at times that I am more than an ‘EB mom’, but sometimes the lines get blurred. EB is part of everything I do, even though I do not have the condition, it dominates a lot of my day and of our family’s life. Still, sometimes I crave some answers. Not exactly the ‘why me?’ kinds of answers, I just want to know what exactly is my path, what the point of it is, what is the reason for things. After all, I do feel picked on by fate, but am I really?

Of course, up to 2001, I had no idea there was a reason or a point to anything. My ‘awakening’ came in forms of books. I know there are skeptics out there, and it’s OK, but for the past several years I’ve been touched and helped greatly by my understanding there is more to life than this. It all started with books from Brian Weiss and Michael Newton and from the teachings of Abraham-Hicks. I forever longed to have some of my questions answered by a psychic, but before I was able to find a good one (…and I still want a reading from Theresa Caputo!!) I found a way for spirits to give me messages in an unique way.

I have an iPod with a ‘favorite’ playlist of songs. Mind you, I have several thousands of songs on my iPod, and I hand picked about 2,000 (still quite a bit!) for my ‘faves’ list to play on long trips in the car so there is no chance of hearing the same song twice. We go to Stanford and camp often, and those are 5-6 hour trips, so I need this. This playlist has songs of basically all genres from the most popular songs of today to hits from the 1940s and classical music, many italian songs and anything in between. One day I was inspired. Out of the blue I asked Alex to pick the next song on my ‘shuffled’ mode. To my shock and tear-filled surprise the song ‘Even Angels’ by Fantasia came on. I could not ask anymore because I was a little creeped out. On my way back home I asked again if Alex had a message for me for Christmas, and then the song ‘My Wish’ by Rascal Flats came on. Tears. Coincidence? Hmmm…

For the following years, every now and again, every time I felt ‘strong’, I would ask for a song and BAM, there it was. Either ‘Tears in Heaven’ (Eric Clapton) would pop up, or ‘One Sweet Day’ (Mariah Carey), ‘I will remember you’ (Amy Grant) and ‘the Dance’ (Garth Brooks) among many others. I no longer thought it was a coincidence. No way.

Then last year, on my trips to see the psychic in San Diego (I researched this lady endlessly to make sure she was the real deal!), Nicky was intrigued by this and started asking all kinds of people for messages. It was amazing how all songs were so appropriate, Nicky and I would look at each other in disbelief. When I asked my Nonna for a message, this italian song came on called ‘Ascolta il tuo cuore’, which means ‘Listen to your heart’. As a matter of fact, anytime we asked an Italian person a question, an Italian song would come on. The translation of the song is here (http://lyricstranslate.com/en/Ascolta-il-tuo-cuore-Ascolta-il-tuo-cuore.html) and as you will read they are amazing lyrics, I am also putting the video here below.

When I asked the psychic about it, she said YES, they can communicate that way. The power of music is not lost in spirit, it is said that music’s vibration are the perfect path of communication.

So, there you have it. I’ve always been a fan of music, dating back to my DJ days in Italy, and it’s because of music that I met my husband, who was the manager of a music store. His love of music surpasses mine though, he’s always listening to his iPod. Even around the house or everywhere we go.

Love and Light,

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Updates on Nicky and What-Nots

IMG_4356skI wanted to share this picture of Nicky’s right hand a year post surgery. It’s doing fantastic! We do wrap the hand religiously and use the splint every night to keep the opening between the thumb and index finger intact, and while we lost a bit on the pinky, it is still ‘straight’, which means it does not pull the wrist inside, which is really great regardless. Even if it gets webbed again, as long as it stays straight Nicky does not mind, it’s the thumb which is most important for us to keep open.

I wanted to share this pic of the same hand 13 years ago (below), 2002 to be exact, just before the surgery he had back then. He was almost 6 when he had that surgery, and it was the last time he had surgery on that hand until last year. Without the wrapping and surgeries, as you can tell, he would have no hand. I know for some patients that is not a big deal, but it is with Nicky, so, as always, I oblige to his wants and needs. They are his hands after-all.MVC-044F_sk

Nicky’s throat has completely healed and with that behind us we can now concentrate on his school and our mundane things such as infusions etc. I do hope he can graduate high school by next June, we’ll see. I did mention earlier that Nicky was accepted into the trials at Stanford, which he will participate once he turns 18 in late November. I have decided not to divulge any details as not to hurt the trials in any way. They did not forbid me to talk about it per se, and they can’t, but they did mention it could damage the research, so if you hear me talk about it, I will try to remain extremely vague on the subject until the official research papers with the results are published. I will keep a detailed diary on my own so I won’t forget anything. Fingers crossed  it will all work out for Nicky!

Thank you as always for the kind words, God knows we need them!

Love & Light,

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New CaringBridge Blog & EB:Disease or Disorder?

logo-caringbridge-stacked-facebookA quick note!  I just updated Nicky’s blog at CaringBridge… I talk about his throat surgery, and lots of good news! Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/

On another note, I’ve been wanting to repost this BLOG I wrote for the EB Info World website about a year ago because it’s still and always will be relevant.

Many hugs and Love <3

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My son Nicky was merely a week old when a good friend, researching the condition, told me emphatically that EB was definitely a Disorder, not a Disease. It may come to a surprise to many when my inner response to that was like ‘whatever’. “Thank You” I replied to her, and never thought about it again.
It truly made zero difference to me if EB was a Disorder, a Disease or, for that matter, a Syndrome, an Illness, a Condition, an Ailment… the only thing that mattered to me was to make sure people at least spelled “Epidermolysis Bullosa” correctly, since I cringe every time I see the folder with EB spelled out wrong by the Doctor that diagnosed Nicky. Can you believe that? Ugh.

There are people however, whose classification matters a great deal. I remember clearly a patient being really upset when the late Princess Diana referred to EB as a disease, or another one crying telling me her life was hard enough without people thinking she was diseased.

Popular belief is that you cannot catch a disorder but you can catch a disease. A disorder is inherited, a disease can be caught by anyone who is not immune to it.
The truth is that, according to my extensive research, contrary to this popular belief, neither disorder nor disease imply particular underlying causes. One term is not more medically accepted than the other. In particular, disease does not require infection (e.g. cardiovascular disease) and disorders can be caused by infection (epilepsy), and doctors use both freely.

Very much like EB, Krabbe Disease, Tay-Sachs Disease, Wilson’s Disease, Huntinton’s Disease and even some forms of Parkinson’s Disease among others are ALL genetically inherited conditions, inherited the same way as well, either recessevely or dominantly.

Confused yet? Let me confuse you even more. Wikipedia describes Epidermolysis Bullosa as a connective tissue disease, WebMD calls it a genetic skin disorder, NIH calls it simply a disease, Medscape a group of inherited bullous disorders, the EBMRF calls it a group of diseases, Stanford calls it a genetic skin disorder, while Cincinnati calls it an inherited disease. Debra (US) calls it a genetic skin disorder, yet has this really great campaign (get this shirt!!!) where it calls it a disease. Many other websites, including other Debra websites like Debra UK & International call it simply a ‘condition’.

So, what does it all mean? Perhaps Wikipedia answered this question for me. According to them, it seems as if the word ‘Disease‘ is more of a broad, inclusive, generic term, while disorder is more specific and newer (and when you get to the Disorder page there, it links right back to disease): “In humans, “disease” is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems or death to the person afflicted, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes, infections, isolated symptoms, deviant behaviors and atypical variations of structure and function, while in other contexts and for other purposes these may be considered distinguishable categories. Diseases usually affect people not only physically, but also emotionally, as contracting and living with many diseases can alter one’s perspective on life, and their personality. There are four main types of disease: pathogenic disease, deficiency disease, hereditary disease, and physiological disease. Diseases can also be classified as communicable and non-communicable disease.

You say disorder, I say disease. Tomato, tomahto. Whatever you call it, at least one thing’s for sure—they both share the same goal, which is to prevent it, manage it, treat it and/or find a cure.

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Legoland Love & Sad Reflections…

IMG_3897_skThis past week we were fortunate enough to visit Legoland-a friend who did a fundraiser for us bought us the tickets, of which I will forever be grateful. I wish I could convey in words how much fun Nicky had in this trip and how nice everyone was to us everywhere we went.

For starters, I must say that Nicky has gotten quite hurt in the past when doing rides so he always refused to do the ‘crazy’ ones (as he called them) at Disneyland & Universal Studios. By crazy ones I must specifically mention ‘Space Mountain’ & ‘Matterhorn’ at Disneyland and the ‘Mummy’ ride at Universal Studios. He wants and tries all he can, but sometimes the hardest part is not the ride itself but getting INTO the car/boat or whatever that may be. This time, however, I saw a different Nicky. The rides at Legoland are milder since the park itself is more geared toward young children and not adults (as, say, Magic Mountain is) so he flat out told me he didn’t care if he was going to get hurt, he was going to have FUN!

So… I brought a soft blanket for him to sit on and told him I would hold him ‘good’ so he would not bump too much here and there. A couple of rides were pretty crazy, the ‘Dragon’ and the ‘Project X’, but all the attendants let us through without waiting and held up the ride for us so Nicky could get in. It takes a little while for Nicky to get in and out and I was thankful the attendants did not rush Nicky and told us to take our time. They let Nicky take the power chair up to the ride itself and then had the chair ready for us when we got out.

We also had quite a few people approach us saying nice things to us, such as ‘I’ll be praying for you’ or hold the door open and such. One kid, about 12 or 13, walked up to Nicky with his little sister and asked him how he got his injuries. He and Nicky had a nice conversation, Nicky told him about EB and the kid told him he felt bad. Greg and I were impressed at this young man. Most people just stared, he had the courage of coming up to him and ask. Mind blown.

My husband walks slow with his brace on his leg, so I am sure we looked pretty noticeable out there. Many times he would put his hand over Nicky’s chair to get some help. It was hard for my husband to get in many of the rides as well but he was a trooper and never complained once. He told me many times that if Nicky does not complain, he has no reason to. My husband is a man of few words anyway, I normally have to ask him how his foot is feeling, or if he’s any pain, as he’s not one to volunteer information. After the first day he showed me his foot and when I asked him if he was in any pain he said ‘atrocious’. I would have never known. I hugged and kissed him. After one slow ride Nicky got a nasty blister on one of his feet (which we later looked at the hotel and it was a nasty blood blister which covered a third of the bottom of his foot) and told me he just needed his morphine and wanted to keep having FUN. So, later when we did the water splash ride and was laughing of how much he loved it I just couldn’t help but kissing him all over. I mean, this kid is an angel. All of that he endures on a daily basis and he’s the sweetest, gentlest, kindest guy everyone hopes to meet. Later in the Gift Shop he followed me around everywhere I went. It’s like I have a little buddy I can talk to at anytime because he’s always ‘there’. He’s my angel, plain and simple.

I try to plan something ‘fun’ every year, and it’s true I’ve had help financially from my ex-husband (Nicky’s dad) and various charities and organizations, but to be honest, I don’t know what else to do. His life is so limited. He can’t do anything. I have to help him with the most basic things that Connor has been able to do himself since he was 3 or younger. There are days that I honestly feel I can’t see him suffer as he does one more day. But what is the alternative? Nicky, despite it all, loves living. As long as he wants to hang in there, so will I. The form of EB he has is progressive and degenerative. That means he gets weaker, day by day. Each day, he needs more and more help, more support. So many children with the same form of EB like Nicky have already passed away. Soooo many! I don’t know how much longer we’ll have him for. He could die tomorrow, or, if a cure/treatment is found he could hang on for decades. The future is a scary, unknown place, so I try to plan ‘fun’ for the future so I don’t dread time clicking away but instead I can look forward to something.

Daily life for Nicky is daunting. It’s hard for me to put it into words. Not many people understands how serious it will be if he falls and breaks a bone, or that a simple infection could result in death for him. Thank goodness for Connor and a couple of online friends, because he has no friends that come over and play, he never had them. Have you ever thought about what it would feel like to see your child losing all abilities, and start relying on you for everything? Does your teenager need you to wipe his bum or put a diaper on him at night? Probably not.   Imagine hearing your child talking about what sort of car they will buy when they grow up, knowing they will most likely never get their drivers license. While we were waiting at the restaurant for our table Nicky was curious about how to drive, so I taught him and told him everything he needed to know. And it killed me inside. I wish and hope he can someday, but reality is staring at me smack in the face. Without a cure, he will die, sooner rather than later, but first I have to watch his body completely waste away. It makes my heart hurt just thinking about it. This is why I try as hard as I can to pack an entire lifetime into the time he has left. I can’t just let him sit around while I go to work to ensure financial security in the future. Not when there is possibly no future. I have to do it now. I ask Nicky where he wants to go next year so I can try to start saving money for it, so that he will have lived an entire lifetime by the time he dies. Everyone should be able to die with more memories than dreams. That’s what I am trying to do.

Here’s the crazy thing – some people, even family, have actually been jealous of those few things we have experienced. I’ll be the first to tell you I would give it all up, every single thing, for a cure. Most people don’t realize how blessed they are. They look to their problems instead of their luck. In our life, everything is a challenge to overcome, everything has to have a silver lining. I am lucky Nicky was not born with an even more severe form of EB, or other conditions that kill babies. I have to be thankful and hopeful and steer away from drama while tackling life’s challenges. Everywhere we go has to be wheelchair friendly or we can’t do it. I opted to get a power-chair that breaks down in pieces and fits in the trunk of my Prius because a wheelchair-accessible vehicle is prohibitively expensive. And I drive a Prius because I use a lot of gasoline taking Nicky around to various Doctors and Hospitals. Visiting friends and family or going to parties and other outings is extremely hard. Nicky can’t climb stairs and places need to be wheelchair friendly. Unless family come to us, we won’t see much of them, and we haven’t. We have to fight with ignorant people who think disabled parking is for anyone. Toileting in public is also an issue. Usually there is only one disabled toilet, and it’s often taken, so we have to get Nicky to squeeze in those normal size ones, a challenge in itself since then the door does not close. I would happily give up all the conveniences if it meant my son no longer had EB. But he does. And that isn’t going to change.

We do have another outing planned for next month-since Connor is such a universe fan, we plan to go to the Griffith Observatory and the California Science Center to see the Space Shuttle, both are local so it won’t be too much trouble, hopefully. I finally heard there ‘may’ be a class reunion happening in October and, well, we’ll see. It’s in New Mexico, two states away and a two day drive. When the dates are set in stone I will check and see if I can manage it. Not sure if I can.

So, at the moment my plan for next year is a 3-4 day cruise to Vancouver from San Francisco. Nicky wants to do another Alaska cruise, but since that’s just out of my price range, I told him Vancouver is as north as I can afford, 3-4 days is the most I can also afford and departing from SF means we can drive there and don’t need to fly nor need a hotel. It’s the cheapest way for me to make sure he gets his wish. Connor loved the cruise, so he’s all for it. If anyone has any ‘insights’ on deals for the Princess Cruise line that does this sort of trip, please let me know!! I know I need to book ASAP, I will have the money for it in a few months (by Xmas at the latest).

Then for 2016 I promised him Italy for graduation. I promised him a trip to see his grandparents for graduation a LONG time ago, so I must deliver. I mean, both Nicky and Connor want to go to Italy now, but I just cannot afford it. I need these 2 years to save enough, and hopefully I can save enough because that ain’t cheap, ha ha. I am always looking for ways to skimp here and there so I will keep clipping my coupons and shop at thrift stores in the meantime!

I want to thank everyone for the kind words-they mean a lot to me. And also a BIG thanks to Juan Lewis for the tickets to Legoland!

Love and Light

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