I Believe…

10175056_781918951831989_5110413486230406466_nI took my son Connor to swimming practice today and while I watched him swim I was listening to my iPod. I have a playlist of songs on it, I call it my ‘fave’, it has over 2,000 songs in it and it plays randomly. When ‘I Believe’ by Diamond Rio came on it hit me hard, and I don’t know why. While I was watching my son doing freestyle there were tears streaming down my face. What the heck?

This ‘grief’ thing is just bizarre. I rarely think of Alex and cry anymore, good gosh, it has been nearly 20 years since his death, but sometimes feelings resurface and I am a mess. It is what it is, I guess. It’s ‘okay’ I tell myself. I am human.

Here’s some of the lyrics that got to me and gave me chills as if angels were really hugging me:

Forever, you’re a part of me
Forever, in the heart of me
I will hold you even longer if I can

Oh, the people who don’t see the most
See that I believe in ghosts
And if that makes me crazy, then I am
Cause I believe, oh I believe

There are more than angels watching over me
I believe, oh I believe

I believe!

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Slaying The Bitterness Dragon

Like every morning, I just spent a good 20 minutes taking off Nicky’s diaper from the night, changing all the bandages and Mepilex Lite pieces all over his bottom and thighs and replacing them with clean ones, and then putting on his underwear for the day, all the while Nicky is crying and screaming in pain. Before I ‘roll’ him to his computer, I have to make sure he has his urinal handy, he has fresh ice and water and give him a dosage of his pain meds to alleviate the pain from the previous night’s bandage change and the painful effects of the laxatives I give him at night. Throughout the day I keep refilling his water and ice, perhaps give him more pain meds, take him to school (taking Nicky anywhere is not exactly an easy feat), and then at night we spend several hours changing bandages. Tomorrow? Repeat, then repeat the next day and on and on.

It would be the easiest thing in the world to be mad and bitter, and I am not a perfect human being, although I strive to be, at times I fall and stumble. I get down on myself, I have a good cry. I don’t want to ask ‘Why me?’ but sometimes I do.

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October 2010 – Nicky was just out of anesthesia here… poor guy!

I remember clearly one evening at the Amplatz Children’s Hospital at the University of  Minnesota almost exactly 4 years ago. I had taken Nicky for a counsel with Dr. Wagner for a ‘possible’ Bone Marrow Transplant (which we then decided against… long story, it will be in the book I am writing about his life) and after they took biopsies and took photos, we were wheeled in the recovery room. While Nicky was coming out of anesthesia, the Nurse who was taking care of him was curious about EB and had a million questions which I eagerly answered. Somehow the conversation shifted to Alex, so I told her about his stillbirth and the following miscarriage, and then I also told her about my poor husband waiting at home, about his strokes, and how he could not take the brace and shoe off by himself so while we were in Minnesota for 3 days, he was at home, sleeping in his brace and shoe. I will never forget the look on her face and what she told me next. She said it was more likely to be hit by lightning than having all these horrid things happen to *one* person!

I chuckled at the time, but the truth remains, fate has picked on me. This is probably why ‘percentages’ do not offer me much solace. If someone states that 97% of this and that turn out fine, I am sitting there wondering and worrying about the 3%. After all, Nicky’s form of EB is 1 in 2.3 million. Having a stillborn is a 1 in 100. Having a stroke at 50 years of age for men is listed as only a 1.6% probability. Needless to say, sometimes I am indeed bitter or perhaps jealous on how cavalier people in general can be about their life and the life of their loved ones, ranging on what they eat (hamburgers & french fries? Yuk), what they do for fun (Skydiving? Shooting? No thanks), or take unnecessary risks during pregnancy and childbirth are on top of my list. When I got pregnant with Connor there were no unicorns and rainbows for me, I was wretched with worry. Not for one minute I assumed that being pregnant meant I was going to have a living healthy baby 9 months later, and I refused to do anything that even remotely put his life in danger. I wish I could go back to feeling the way I felt when I was pregnant with Alex, so happy, so carefree, alas, life had taught me better.

But isn’t bitterness just another word for heartache? I laugh sometimes when I read of what other people worry about, talk about or judge. Gosh, I wish I could worry about silly stuff too, stuff that do not at all effect my life in any way. Truth is, I want to worry about unimportant stuff too, but I cannot. I have daily reminders of the crappy cards life has dealt me, the ridiculousness of the worries of others reminds me that perhaps I can use my bitterness to give me strength to fight for what is truly important.

How do I fight bitterness? What works for me is to surround myself with positive reinforcements. I avoid any negativity. I decide every single day to be happy, because I know how bitterness and anger are like poison, so I do not judge, I do not criticize, I do nothing that does not feel good. I try my best to own the pain so it does not own me. I can work daily to make sure this bruise does not take over my soul.  I don’t pretend that the hurt is not there, I don’t hide it under the rug, I deal with it and let it go. I am not perfect, and I know sometimes the ugliness does come out, I am a work in progress. Like I said in a previous post, I am desperately seeking Zen.

And while I work on myself, let’s not forget I am also my sons and my husband’s cheerleader. I cherish that role most of all.

Love and Light,

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Reminders…

Nicky and Mamma, August 1997

Nicky and Mamma, August 1997

I was looking at this photo in Nicky’s bedroom last night and as I pointed to it, I told Nicky… “Look, weren’t you just simply adorable”? I kept staring at it, and staring at it, marveling how good Nicky looked in this picture, like a normal 9 month old, then I remembered how it was all a lie.

You see, it took me months to make sure he had no “big” wounds or scabs on his face, and the moment he looked good I rushed over to Sears. I covered his whole body with a cute outfit (that had been bought for Alex nonetheless) and somehow I was even able to put cute shoes on him, the one and only day in his life he actually wore normal shoes. I held his hand in mine to hide his wounded hands that were already webbing, and pretended everything was perfect. Back then, as a new mom, I somehow still wanted things to be ideal, hide what I perceived to be anything out of the ordinary. Perhaps I was pretending, putting up a charade, but I loved my baby more than life itself, I craved normalcy.

When I walk into Nicky’s school nowadays, the difference with his peers is so gigantic, it’s hard to pretend anything. It’s not that I haven’t accepted or even think about it that often, but at times it simply cannot be helped. Anytime I take Nicky to school I see dozens upon dozens of these kids helping my son, who are taller than me, drive to school, have girlfriends, piercings, tattoos, even jobs, while the most my son can do is sit in front of his computer all day playing Minecraft and ask me for pain meds. The differences that once could be hidden,  are now as evident and loud you would have to be blind to miss them.

Nicky is Nicky, the most amazing kid anyone would hope to meet. Anyone that has met him and spent any time with him, knows what a true angel on earth he is. He is kind, generous, sweet and thoughtful. He has challenges beyond what any one of us even fathom, and as his mom, this is at times an extremely bitter pill to swallow.

EB is EB, there is no good form of EB, but there is no good form of any illness, is there? Is there a ‘good’ form of Multiple Sclerosis? Is there a ‘good’ form of Cancer? Is there a ‘good’ form of Cerebral Palsy? Yet there are degrees of awfulness within each condition that make it seem as what one deals with is not at all what another is faced with. They cannot even remotely be compared, as a matter of fact they are so different they should be called something else to avoid being compared to one another. Nicky’s version of EB is extremely rare, and God-awful. No, I don’t want a crown, I would give my life for Nicky to be able to live his life without EB. Sometimes I am dismayed and hurt that some people think I must be too lenient with him, how Nicky is overwrapped etc; I had to defend my actions since the day he was born with Doctors, family, friends and more; as if they know my child more than I do. It truly hurts when others blame me for Nicky not being able to walk, or for thinking Nicky can definitely get married and have children when he hasn’t even gone through puberty or can even dress himself or move around on his own; or that I am just ‘mean’ for taking clues from those endlessly complaining, complaining, complaining and come up with conspiracy theories in order to hate people and instead trying to be grateful of all I have instead. Yes, how ‘mean’ of me it to be grateful! All of us have different challenges. I don’t claim to know what you’re dealing with, but I have empathy, the same empathy so many have denied me, the same empathy that is so absent on some people they feel the need to judge, bath mouth behind your back, judging those you don’t know about things you know nothing about helps no-one. Kindness and Love is what it’s all about.

Yes, I am reminded almost daily that as far as EB goes, Nicky has received the short end of the stick. It sucks. I hate to be reminded. Tears flow and I hate that tears flow. His life is so incredibly limited one has to rethink the whole meaning of what life is about. He will never need to get As or win anything for me to be proud of him, I am proud of him just because he is my son, no conditions.  I am so very grateful of the happiness he holds in his heart despite the pain he feels every day. I am so very grateful of how he still has hopes and dreams. I am so very grateful there is this possibility of making his life a little easier with the trials. I am so very grateful he gets so excited when he plays Mario Kart and how he tries every day to beat the ‘world record’! I am so very grateful he gives me a kiss every time I get near him. I am so very grateful his little brother loves him as much as he does and how he makes Nicky feel normal on many occasions throughout the day. Connor truly worships Nicky! It’s so amazing to see my boys cuddle, play together, mess around. It’s all good.

Keeping gratefulness in my heart, always.

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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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