Nicky’s Legs

Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog.

Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain. Photos is the only way to show the cruelty of of his condition… Recessive Dystrophic Epidermolysis Bullosa.


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What you see here is his left foot. His ankle (not shown) was one of the areas that was hurt as a baby and it’s basically always raw. The top of the foot here is very prone to being scratched and is almost always an open wound. The ‘white’ residue you see is what remains from our ‘concoction’ we use on his wounds to speed up optimum healing, made of a mixture of Desitin (or any 40% zinc diaper rash cream), DermaGran, Argan Oil, Keragel and Medihoney. Making sure wounds heal well and keep his body protected is our #1 priority. We don’t really ‘dry’ up wounds. We tried and not only it was extremely painful for Nicky, the scab that develops usually harbors an infection underneath. We would push it and green slime oozes out. Not only that, it heals with a nasty scar, of skin that is too fragile to even explain. Our concoction allows for proper, faster healing. Hey, it works for us. We do what we must and what we learned from trial and error over the past 18 years.

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His leg is doing quite well lately, there was a time where the whole leg was 100% raw, but keeping it padded means he cannot scratch his fragile skin open quite so easily. His knee is also doing much better lately, which I attribute to our ‘concoction’. His thighs are a hard place to wrap and area always blistering. I am always wrapping higher as the bandages invariably move down. Ugh.

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The top of the foot looks almost always like this. As per Nicky, it is extremely painful. Putting any pressure on it to take a step is hell.  The middle of the foot is usually ok, but his heel looks like this as well, 90% of the time. It’s a constant battle.

Thank you for allowing me to post these, as I said, it’s not an easy thing for me to do, but I feel the need to educate everyone about EB.

Love and Light,

spring_silvia

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October 15th – Worldwide’s Pregnancy & Infant Loss Remembrance Day

IMG_0010_alexFsI know it seems as if maybe I talk about Alex too much, after all he was in my life only 9 months, all spent inside of me, but how precious is that thought anyway? Alex’s entire life was spent underneath my heart. I felt every kick, cherished every movement. I spent 9 months day dreaming of my baby, my first baby nonetheless. I had been wanting a baby forever. And then the unexpected happened, and nobody wanted to talk about it.

I think if I had been allowed to talk freely about Alex back then I would possibly be healed in a probably healthier way now, alas, I still feel I am in a good place at this point, and the thought that there is a day in the year that I feel I CAN talk about him means the world to me.

While I do think we’ve made strides in awareness, I still believe that losing a baby is still considered an invisible loss. I wrote Alex’s story (quite lengthy in its own right) as the beginning of the book I am writing about the life of my son Nicholas, who was born 21 months after Alex was stillborn and diagnosed at birth with an incurable and possibly lethal skin disorder called Recessive Dystrophic Epidermolysis Bullosa.

In honor of this day, I am offering the book LOSING ALEX free… TODAY ONLY! Here is the link below…

http://www.amazon.com/dp/B00ARZF6ZW/ref=cm_sw_r_fa_dp_FzOpub0AG9DSA

Please cherish every moment you have with your children, and be kind to those that had to bury their angels. There is truly no more heartbreaking loss.

Love and Light,

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Coping Techniques

I constantly have people asking me ‘how I do it’ or how Nicky handles all his pain. I think over the years we have learned our unique way of coping with things. I can only limitedly talk about Nicky and how he deals with EB, I know that even if I am his mom, I do not want to speak for him too vaguely or assume, so I will start with him first of what I know for sure.

Nicky hates EB. Make no mistake. He hates it. He will say it. When others say it he agrees. When he saw my shirt that stated ‘I hate EB’ he loved it. I am thankful he is a boy and a boy with limited patience for social media because he has never cared about what ‘word’ I use to define his condition or what others have to say about it. He’s a typical guy, he does not talk much, but, like me when I was young, when I spoke, it meant something, and so is he. He’s always in pain and he takes his mind off by playing videogames. This is why he’s such a Mario Aficionado, he plays Minecraft or plays with his DS. He loves playing. He tells me often he has no intention of dying and I attribute his good attitude to keeping his spirits up, along with pain meds and his iMac. Of course knowing about the clinical trials coming up has been a huge boost. He has friends he talks to that play with his games and he will do anything to take his mind off EB as much as he can. Of course the biggest drawback is that he’s basically immobile for most of the day because any movement causes him pain, so I am thankful he can do things that take his mind off. I will be there for anything he needs. Forever.

0115a31a7ab1c062f26c8161e4f1bdacMe? My coping techniques are a little more complicated. Not only I am a woman (emotions galore-my husband often wonders how I deal with all the emotions twirling through my head), but I am also an adult after all, an adult responsible for my whole family, not just Nicky. Not only I am Nicky’s 24/7 nurse and his taxi-driver, homework helper etc, he can’t do much on his own so besides dressing him, feeding him and taking care of morning and night routines, along with hospital visits and more, I also take care of his little brother Connor, who, at 11 years old, is a handful himself. Connor has improved immensely over the years, when he was a toddler he was Mr. Disaster, and I counted 15 times in one day he got naked when he was little, now he’s actually helpful, but he does have some growing up to do. He has swimming, karate, homework and needs to be told to brush his teeth and change his clothes. He’s vastly easier to take care of than Nicky, but I am still his taxi-driver, taking him to and from school every day and to the other activities. There is also my husband, that despite having made gigantic progress since his strokes, there is much he needs help with. He does a lot himself considering his limited use of one arm and leg. I had someone asking me when I was going to go back to work… my standard answer is “maybe in the new year” but that is also vague, depending on Nicky’s upcoming clinical trials, but I want to make sure the book I am writing is done first. That is my priority right now. I am certain it will be done before the end of the year.

Don’t get me wrong, I want and probably ‘need’ to go to work for my sanity; at this point and many times during the day I am not sure how the heck I might manage it. My house is a mess as it is. Do I really ‘need’ to go to work? Or would I just do it to take my mind off stuff? So far, a number of things work great in taking my mind off things for an hour or two. I try to read at least half an hour every day. I try to walk half an hour three times a week. I have my cappuccino every morning and count my blessings each and every day. My latest obsession is ‘Outlander’, and that says something considering I do watch a lot of TV. I know I am obsessed when not only I watch and re-watch each episode a million times (I never ever watch any show twice, so that says something), I listen to the podcasts, I am now listening to the audiobook, and considering I never, ever read these kinds of books (it’s truly a first for me), it says a lot. I am obsessed and I like it. I can’t remember the last time I was obsessed over a TV show. CHiPs maybe? That was a long, long time ago. I was a teenager for goodness sakes! I do like it. It’s something I watch and do for “me” and “me” only, since my life is so not about me at all. Of course a glass or two of wine at night help, especially while changing bandages. Nicky likes it when I have my second glass of wine, he says I get ‘funny’. Everything becomes a joke. It’s true. I also like to do somethings that I know I have control over, such as play around with my hair and clothes. I visit this thrift store that is huge and I get a huge bag of clothes for $10, no lie. Love it. I love collecting earrings and bracelets of all kinds. I am sure that once my book is done I will re-start my graphic design and photography stuff. If I can find a part-time job that has anything to do with that I would be thrilled.

I know this may sound a little out there to some, but I am also a firm believer that we ‘chose’ this life. I have stopped asking ‘why me’ a long time ago because of that. There is definitely more to life than this, and this knowledge alone has helped me in ways I cannot easily explain. We are here in the now, choosing this life because we wanted to learn something. This past year I have been fascinated by Past Life & In Between regressions to find out what our purpose is. I’ve known about this since 2001 when I first started reading books from Brian Weiss and Michael Newton, I have watched documentaries and also interviews from people who either remember past lives, deja-vus or other. There is a reason why we are drawn to certain things, how some things look and feel so familiar. I picked up English so fast when I moved here from Italy, I am certain I spoke it before. The first time I met my husband I was mesmerized, almost in a trance. It’s like my soul recognized him… There he is! So now I feel I need this information more than ever, I want to know what my purpose is. I found this woman that is going to help me find out just that. She not only trained with Brian Weiss himself but has her own amazing story. The funny thing is that my parents do not believe in this at all, and you know what? Oh well. I do. I believe in it 1000% and I have long believed we have our journey, our own way of coping and dealing with things, and if this helps me, what does it really matter what others think?

So my coping techniques basically are to ‘do what inspires me’ and enjoy it, while taking care of things that must be done, never forgetting to take care of myself. My family needs me, and I am OK with that.

Love and Light,

flower_silvia

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The Boy Whose Skin Fell Off

Ten years ago a documentary aired that I am yet to show Nicky and not sure I ever will.  I wasn’t even able to watch the whole thing in one sitting, I kept crying buckets and it took me three sittings to finish it. I guess you could say it hit a bit too close to home. The story was about a man with the same form of EB as my son and his final months of life as he purchases a casket and attends fundraisers, is interviewed etc., after he was diagnosed with skin cancer. Knowing he would not live long, he wanted this documentary to raise EB awareness. The documentary is widely available on YouTube and other venues nowadays, and a little over a year ago, after I finished reading the book that accompanied the documentary, I decided to watch it again, alas… it wasn’t any easier to. Once again, three sittings, a whole box of tissue gone.

As I am writing the book of Nicky’s life, I can’t refrain at times to mention certain passages from Jonny’s book because so much of what he went through parallels my son’s life and helps me understand my son better. At some point I might mention it to him and tell him where he can see the documentary if he wants to, but I am certainly going to tell him that while he may feel Jonny was a kindred spirit, at the same time I will have to warn him of his upcoming demise. Not exactly a subject I bring up to him, though he knows of all the wrong things that can happen with EB.

To be honest, I don’t think Nicky will ever watch it. It seems as if a lot of what keeps him in good spirits and happy is doing things that revolve around him being entertained and surrounded by love.

For anyone else that wants just a little small clue of the life of someone with a diagnose of Recessive Dystrophic EB, please watch. It will change your life, promise. Here it is below…

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Giant Leaps for EB Awareness

This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself!

IMG_4663_skLast year, right around this time, the book ‘Courage Under Wraps‘ by Jodi Champagne, depicting Nicky’s Life with EB was released, which led to the FOX11 coverage of it called ‘A Rare Condition‘. Because of all of this coverage, Nicky’s Facebook Page swelled with likes, words of encouragement and so much love. I honestly feel like it saved me in so many ways. So many took it upon themselves to do fundraisers for Nicky to get him a new chair and other medical and non-medical needs, Jodi and her husband helped to remake his bedroom, his dad’s work decided to commit themselves to EB Awareness and so many kind souls fulfill Nicky’s wish list on Amazon. All of this is so very humbling. Like I said before, I have to pinch myself! Nicky’s own school just recently did an EB Awareness week for Nicky, and Nicky is the ‘face of EB’ for the website HeroLife for the month of October.

Besides all of this going on with Nicky, there are other parents out there making an enormous difference. My heart swells with pride, thankfulness and humility over the likes of Andrea, who puts these amazing star-studded fundraisers for the EBMRF we are so privileged to attend, and to other EB parents who are determined to get their children cured by starting foundations, such as the newest one called EBRP (EB research Partnership) that just launched today.

I don’t know why, but it still seems a bit of a fairy tale when I hear of people in general, let alone celebrities, get involved in EB Awareness. 10 Years ago, if someone would have told me that Adam Sandler, Brad Pitt, Courtney Cox or Orlando Bloom would be so touched by EB children to take time out of their busy lives to donate and attend fundraisers I would have told you “impossible”. Perhaps my incredulity stems from the fact that for so many years I honestly thought nobody cared. Heck, Nicky is shocked that people care still. His entire childhood consisted of me and him, #teamNicky as we called it, taking care of things, slaying dragons on our own, and let me tell you, these dragons were fierce.

As I am wrote in my book (it’s almost done, promise!!), since Nicky was born I tried my best to get the word about EB out, I mean, this was such a horrendous condition!! Calling it horrible is an understatement, it truly is.  As hard as I tried, starting with my ebinfoworld.com website, then with the Red Ribbon for EB Awareness, assorted graphics & posts, support groups and what not and the book Living with Epidermolysis Bullosa, I felt I had made an insignificant dent. Totally insignificant. I mean, nobody even cared about the ribbon, nobody even wanted to use it or criticized the color etc. Here I was, trying to do ‘something’ and all I got was GRIEF back. I wish so much I had some clout. I wish so much I “knew someone”, you know, someone that people listen to when they spoke. I knew no-one.

I wanted to post a couple of pics today while I am at it, since this blog is the only ‘safe place’ for me to post these pics. I always felt that EB needs to be seen to be understood.

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The first one is of his left knee, I know it does not look good, but to us is looking fantastic! The wound is so much smaller than it used to be. The wound is usually at least 3 times bigger, and the knee hasn’t been totally healed since Nicky was 3. Imagine that.

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The second one is of his right foot, as to us also looks quite good. Normally he has a wound area that goes all the way around the ankle and the top of the foot, so we’re thrilled.
His toes do look weird, I know the big toe is fused with the toe next to it, and the pinky toe is fused to the one next to it as well. The middle toe is somewhat still floating all on its own, but the bottom part of the toes it’s all fused together. It’s the madness of RDEB. Fusing is the hallmark of the Recessive Dystrophic form of Epidermolysis Bullosa. Up until the time when Nicky was 5 or 6 I used to put gauze in between the toes to keep the toes separated. Then Nicky told me how uncomfortable that was and I stopped. I realized that I didn’t want to make Nicky more uncomfortable than he already was. It’s not like he ‘needed’ the toes for anything, right? We have to pick our battles.

Love and Light,

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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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