Ivrea la bella

Posted on February 14, 2012 by Silvia

“Ivrea la bella
che le rosse torri specchia
sognando a la cerulea Dora
nel largo seno,
fosca intorno è l’ombra di re Arduino.”

I was born in Italy in an old town called Ivrea and my entire family lives there, so speaking of Ivrea is like speaking of my home, my life, my roots. While my dad’s side of the family comes from a village near Vicenza called Lusiana, my mom was born in Ivrea, my grandmother near Ivrea, my great-grandparents in Ivrea as well and so on. My roots are firmly planted here.

Several years ago… 15 to be exact, I bought a rather thick book telling the ‘short story’ of Ivrea and I found it quite fascinating. I never realized how much history my little sleepy town had and how important it was at one time and even recently.

Here is my article as I posted it on the website back then, with photos I took last summer.

Enjoy!

Silvia

Ivrea is the center of the Canavese, in the Piemonte region, in northern Italy, and is quite old. In the year 2000, Ivrea celebrated its 2100 birthday! It was, in fact, mentioned for the first time in a list of colonies of the Roman Empire in 100 b.c. with the name “Eporedia”.

Ivrea's Duomo

In greek, “Epo” means “horse”, and in old welsh “reda” means carriage, hence it is felt the name Eporedia means “carriage trained by horses”, which makes sense, because Ivrea was in a strategic passage point both for the Romans and the people who lived in the area before (the Welsh) who named it. Eporedia’s name changed with the course of times and centuries from Eporedia to Iporedia, Ivoreia, Ivreia and the modern name Ivrea. Before the year 1200, in books, Ivrea had also been called Iporegia, Iporiensis and even Eboreja. Ivrea is 265 meters above sea level, and it was originally built to the left of the river Dora Baltea. One of the bridges over the river Dora Baltea “Ponte Vecchio” (old bridge) was built by the romans 2000 years ago and renovated through the centuries.

The 'Ponte Vecchio'.

The history of the town is quite extensive, and rich of traditions, I have a 500 page book that narrates the history of the town, and it’s called “A brief history”… so you can imagine how much there is to tell. A couple of buildings that are worth mentioning are the Duomo (a gorgeous church), which was built in the 10th Century over some old ruins of a church built in the year 340 a.c., and the famous Castle with its red towers, built in the 1300s, again over the old ruins of several castles who had been destroyed.
Eporedia remained part of the Roman Empire until its demise in the 5th century (approx. 476), and in the following 100 years the land belonged to several people, namely, the realm of Odoacre, then in 493 of Teodorico and his successors, in 553 the “Bizantini“, until the “Longobardi” took possession of it in the year 572. The Longobardi, in fact, were proprietors of about half of the peninsula. Under their reign, the land had a king, but it was divided into a lot of little pieces belonging to certain members of the nobility. This continued for a little over 200 years, until the year 773, when Carlo Magno won a war against the king of the Longobardi and became Emperor of most of northern Italy along with most of Europe.

One of the Castle's Towers

The new Emperor didn’t change much in the division of the territory, but he replaced the Dukes and Dukedoms to Counts and Counties and Marquis and Marquisate. Ivrea became a Marquisate. At Carlo Magno’s death the new Sacred Roman Empire started to fall as well. In 888 there was a new Reign of Italy, but it only lasted a century, in fact in the year 961 it was conquered by the King of Germany Ottone I. At the death of Ottone III, his grandson, in the year 1002, the Marquis of Ivrea “Arduino“, became the King of Italy, hence Ivrea became the capital; he had been the 9th Marquis of Ivrea since the beginning of the Reign of Italy. The history at this point becomes a little complicated, full of bishops and descendants of Arduino, wars etcetera. Worth mentioning is the appearance of Tommaso I of Savoia who became Emperor of a large area surrounding Ivrea, and with him started the legacy of the Savoia, who later become the Dukes and then Kings of Italy. In the year 1313 the dominance of Ivrea was passed along to Amedeo V and the prince Filippo of Savoia. In 1543 Ivrea was occupied by the Spanish, who built the “Castiglia”, a fortress to defend the city. A few years later in 1554 the French took possession of the city, but in 1559 it was once again given back to the Duke Emanuele Filiberto of Savoia. Almost 100 years later, in 1641, it went right back into the hands of the French, who lost it and regained it over and over again several times and with many lives lost in battles. On May 26, 1800 Napoleon Bonaparte entered the city along with his victorious troops, establishing control that ended in 1814 after his fall.

Tower of Santo Stefano

The geography of the modern Italy was not what it was 1000 years ago or even just 150 years ago. Italy as we know it today was established in fact in 1861, and the Savoia were part of that history for nearly 1000 years, having had as capital Turin before Rome until the end of WWII. The last King of Italy, Umberto II, took the throne after his father, Vittorio Emanuele III abdicated the throne to him due to the Italians’ malcontent with him after the end of the war because he had sided with Mussolini. Umberto decided to put the fate of the future to the people and in the end a new Republic was born and the Monarchy ended, and the whole Savoia clan were banished from living in Italy and only the women could come to visit. That law has changed in the early 2000s, but that was, sadly, the end of the royalty of Italy that lasted a millenium. What is interesting is the importance of Ivrea in the history of Italy, and the many events that took place throughout the course of the centuries.

The railway bridge over the Dora Baltea

As far as more concrete advancements of the city, the railway was inaugurated in 1858 between Ivrea and Turin, and was followed by the construction of “Ponte Nuovo” (New Bridge) in the same year. In 1886 they inaugurated the railway going from Ivrea to Aosta. This one was a little more complicated to do because it entailed building an iron bridge and tunnel over the Dora Baltea.
In 1908 the company Olivetti was started by Camillo Olivetti and became an enormous boost to the economy of the city. According to historians, the very first ‘computer’ was built there, it was called Programma 101. In 1952 they reconstructed the modern hospital, followed by several improvements of all roads and buildings everywhere. In the early 1960s the Turin-Ivrea-Aosta highway was built and in 1981 a new freeway with a bridge called XXV Aprile was opened.

Piazza Citta'

Ivrea is surrounded by very fertile land and many small hills. In between these hills lay several lakes of varied sizes. The Castle of Montalto can be seen from many points as it is built on top of a hill. Between Turin and Aosta and beyond to Chambery in France (the city where the Savoia originated from) are several castles who, in medieval times, used to communicate to each other using flags or lights. It has been said that a message could be sent from Chambery to Turin and back via all these castles including the one in Ivrea in two hours!

Teatro Giacosa

Ivrea’s patron’s saint is San Savino, which festival in his honor is held on July 7 of every year. San Savino’s story is quite interesting. He lived between the end of the 3rd century and the beginning of the 4th, and was the bishop of “Spoleto”. Because the Christian faith was not approved by the Roman Empire, he was arrested, put in prison and his hands were cut. His followers kept coming in to visit and support him, and one noble woman in particular received a miracle for his nephew, who regained sight after Savino touched his eyes with his stumps. The person responsable for the imprisonment of the Saint came to know about this miracle and since he himself had a severe eye disease he came to the Saint asking for his help. When Savino repeated the miracle, he converted him and his entire family to the Christian faith and was freed. The emperor Massimiliano though, who could not tolerate the Christian Faith sent a member of his guards to kill Savino, and so he did. A woman who had already kept Savino’s hands, buried the saint a couple of miles outside of the city. In the year 313, after Constantino gave his blessing to the Christian faith, the body of Savino was exumed and put in a church that the people of Spoleto dedicated to him.

His body remained there for 6 centuries, until the son of the marchese of Ivrea Berengario II named Corrado Conone decided to give Ivrea a patron Saint to free the city from a plague that was infesting the town. As soon as the remains of the Saint entered the town (as they say the reporters of the time) the plague ended. The saint was then proclaimed Patron of Ivrea and his remains were put in a cathedral.

Ivrea’s culture includes a very colorful and famous carnival… I will post my article about the Carnival of Ivrea next week!

~Check out Ivrea on Wikipedia.

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Ways to go…

Posted on February 7, 2012 by Silvia

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002.

My first glance at Nicky, he was perfect!

I love to write, it’s almost  part of me to be able to express myself this way, I truly enjoy it, however at times trying to describe some events and the knee jerking reality smacking you in the face is not exactly a cake walk. Emotionally, it takes its toll, I can only write so much some days without starting to shake at the gut wrenching memory I am reliving.

In the end I want to be able to clearly describe what a sweet child Nicky is without getting too sappy, I want to be able to make the reader feel things they never experienced, I want to be able to help people understand what EB is and how having a rare disorder complicates things. Having a common disorder or condition is bad enough, but when the condition you’re dealing with comes with no treatment and you struggle to get the supplies you need to achieve optimal health, it makes things 100 times worse than they should be.

I’ve been busy reading many different books in an effort to get not only ideas for mine, but also to realize what I ‘can’ talk about and what I ‘should’ talk about. The book is going to be filled with feel-good stories and hard moments that this amazing child lived through, and, clearly, there are many personal things I will never even closely mention. Sometimes, however, I feel as if some things are a bit taboo, such as talking about the Health Care System of the US and what is covered and not covered under the almighty for-profit insurance companies and the differences on how EB patients are taken care of depending on what country they are born into. I’ve talked on the phone with at least a couple of moms of EB children who were quite distraught about the unending co-pays and insurances denying things over and over again, but you would never know because they never mentioned any of their financial struggles keeping up with EB on their Blogs. I often wondered why.  Then again, I kept my personal bankruptcy, which resulted from our insurance company refusing to pay for supplies and other things a secret because I was so incredibly embarrassed and mortified about it. But the secret is out. I am no longer embarrassed nor mortified, I am mad as hell. As Taylor Armstrong says ‘I finally found my voice and I am not afraid to use it’. The truth needs to come out, my story needs to be told. If nothing else, to help change some things or/and to make others feel less alone. I am hoping to get the book finished for Nicky’s 18th Birthday, in late 2014.

Here’s some books I recommend which I found incredibly helpful:

If you’ve lost a child:

For Inspiration:

For EB Parents:

Tough cookie by Lillian Sparks * Parents Cry Too! by Lillian Sparks

My Other Books:

Blessings!

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Cattle Tale

Posted on January 28, 2012 by Silvia

If you’ve ever driven on Interstate 5 North from Los Angeles towards San Francisco you surely passed something you could neither miss with your eyes nor your nose. As you approach the town of Coalinga you will be hard pressed to miss the thousands of cattle right off the freeway. Cows and cows, as far as the eye can see. I always thought this sight deserved a photograph (being the avid photographer that I am) and while I’ve stopped on the side of the highway to take photos before, I always meant to that that ‘exit’ to take a closer look but never did. I either missed it, or forgot about it, or didn’t have the camera…

This past year I had to take this drive 7 times either taking my son to Stanford or to Camp, and just this past week, on January 19th, as I was driving up again, Nicky asked me to get him the pillow, put his seat down and get him something to drink. In the past I would just stop on the side of the highway, but on the last trip two weeks prior, when I did just that, a Highway Patrolman warned me to take the ‘exit’ next time to do whatever I needed to do because of how dangerous it is to do so. Hence… I told Nicky I would take the next exit. Imagine my surprise when, as I got over the hump, I see the sea of cattle. Oh goody, I have the camera with me! I stopped to get Nicky situated but that was not a good spot to take photos. There was all kinds of barb-wire that obstructed the view so I decided to drive around the ranch to see if I could find a better area. As I was driving up the road there seemed to be a very welcoming driveway to the ranch so I decided to go in… only to realize that was not a good idea. This was not a public place, let’s just say that. The sign said ‘Harris Ranch’ and as I was trying to make a u-turn a security officer prevented me from doing so and as he approached me he wrote down my licence plate number. Really? What’s going on here? As he approached my car I told him that Nicky, sitting next to me covered in bandages as usual, wanted to see the cows a little closer on our way to the hospital. He seemed gracious enough, told us these were not cows but ‘steers’ (A cow is a female ‘bovine’. A steer is a neutered male.). He was pleasant enough and let us go.
Driving out of the driveway I noticed a small opening between the main entrance and the beginning of the barbed wire so I figured I could stop for a few minutes, take a couple of photos and get back on the highway. I was literally stopped for what could not have been more than 2 minutes when I hear a knock on my window. It was another security officer, but this one was far from pleasant. As a matter of fact he started harping so loudly and continuously that for the next couple of minutes I was unable to get in a word wedge-wise and kept talking even after he left! I don’t think I can remember anytime in recent history when someone was so rude and threatened me like this, and for what? Taking a couple of pictures of their precious steers? What?
 Even though the sign ‘no stopping at anytime’ was only in front of me and not behind me (meaning I was not in the ‘no stopping’ zone), he told me that he could give me a steep fine, yapped about terrorists and Animal Rights groups, yada yada yada, on and on and on. I was actually done taking photos already (here is one BTW), put my camera away and off we went. Good Lord!!

When we got to the Hotel later that evening I called my husband to let him know we were safe and I told him about the incident. He reminded me of the movie Food Inc and how this was probably one of those ‘feed lots’ we were shown in the movie, and how these people were probably paranoid and possibly embarrassed at what they do so perhaps in their mind it was perfectly okay to harass a mom with an obvious sick child in her car immediately coming to conclusions at the reason why I was taking pictures.

I will say, I am not a huge animal activist and the reason I was taking photos that day was because of the sheer amount of cattle on this land (anywhere between 100,000 to 250,000 depending on the source) and for no other reason, but if the movie Food Inc taught me anything is how unsafe this kind of meat is. Greg and I haven’t eaten any beef that isn’t organic/grass fed since we saw it a few years ago and I cannot even remember the last time I had a hamburger from a fast food establishment. Here’s a clip from Food Inc that explains it well:

Interestingly enough, this past trip I actually stopped to take photos of other cattle, free to roam, so I know these were ‘happy cows’, ha ha.

I found other blogs of people that were harassed by Harris Ranch security, or simply had something to say about this place and here’s the link to their stories:
A Tail of Harris Ranch,  Harris Ranch Feedlot, Meet your Food, Meet your Meat, Feedlot vs. Free Range (my favorite one).

OK, so, apparently the Ranch had been under attack the week prior of me stopping from Animal activists, and that’s fine and I understand the heightened security and paranoia, but that is no excuse to harrass everyone that stops for crying out loud, taking down licence plate numbers etc. Did I REALLY look like a terrorist?

I have just one more thing to say, and I would have said this to the officer had he given me a chance to speak. If your ‘Ranch’ is this paranoid and this sensitive about publicity to the extent of harassing the general public about it, how about moving such ranch AWAY from one of the busiest Interstates in this country, where thousands of people drive by every single day? I would have never known this place existed if it would not be adjacent to the freeway, and I most certainly would not have gone looking for it.

Food for thought.

 

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Post-surgery pics

Posted on January 23, 2012 by Silvia

Once again I am forced to post these pics on my blog instead of, say, Facebook or caringbridge due to Facebook’s constantly deleting my wound pics and caringbridge not really giving me much space or a way to clearly display these.

The detailed blog about the cast removal is here: http://www.caringbridge.org/visit/nickyz/journal

Below is the hand carefully re-wrapped by the PT ladies after the cast was removed. He has a splint under to keep the wrist straight and the hand open.

 

Below is the hand unwrapped. The thumb may not look like it’s way out, but it’s quite a bit more out than it was, Nicky is absolutely thrilled. The index finger is not where we were hoping, but it’s better than it was and we’ll do physical therapy to pull it back more while the skin on it is still “soft” from surgery. Will explain more on Caringbridge on what that means…

 

This picture shows the pinky, which is AMAZING. We haven’t seen that little thing in YEARS. Now, it’s the only finger that it’s still quite raw and quite painful, but overall we were very happy that the rest of the hand was mostly healed.

Hugs,

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Nicky’s wound/hand pics

Posted on January 8, 2012 by Silvia

So, silly me… I wanted to have a ton of pre-surgery pics of Nicky’s hand, but I messed up. Nicky wanted his ‘left’ hand done so I took several photos of that hand, but then two weeks ago he changed his mind and decided to do the right one and I never did take good, proper pics of it.

The right hand was in slighter worse shape than the left one. While the left hand still has a mostly straight index finger, the right hand did not. Beside that, both hands were in similar shape, as the thumb was webbed toward the palm of the hand and the pinky completely webbed in the hand, so much one could not see it with the naked eye.

I wrote a BLOG on Caringbridge http://www.caringbridge.org/visit/nickyz/journal about the whys and the hows of the surgery itself with a bit of history. Since I am limited on the photos I can post there and Facebook told me that anymore wound pics and they would delete my account, I have no other choice but post them here, with Nicky’s consent, of course.

I took these photos during Hydrotherapy on December 28th, 2011. This is the hand that had the surgery. The middle and ring finger are still pretty straight, but the pinky is completely webbed in.

This is the left arm, he has some raised wounds that concerned the Doctor at CHLA. While he was fairly certain it is a form of granulation tissue, he wanted to biopsy these anyway, and since he knew he was having hand surgery done soon, he asked the folks at Stanford if they could biopsy these while Nicky was “under” for surgery.

This is pretty much the only other pic I have of his right hand. The thumb did not stretch beyond this position and while the fingers were out, they were ‘curvy’. Pinky is gone.

In two weeks we’ll go take the cast off and I will take the photos of the ‘after’. The first photos will not be pretty, since this is a syntactically release, his hand is pretty much “skinless” at this moment inside the cast and it will not heal by the time they remove the cast. In the past it took around 6+ weeks for the hand to heal back up, but he was MUCH younger then, so at this point, we’re not sure how long it will take to heal completely.

{{HUGS}}

Silvia

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Rotten Tomatoes

Posted on January 4, 2012 by Silvia

It’s true with anything, anywhere in the world. You give something for free for people in need and some will take absolute and complete advantage of it, making someone else suffer in turn because they are taking something away from those who desperately need it. But what do we do, take this advantage away, make stricter rules or close our eyes? Surely the rotten tomatoes of our world needs to pay consequences, but do they? Never in my experience.

I always found it perplexing how something designed to specifically help children like my son, who suffer horribly every day of their lives, all of a sudden becomes ‘not available’. It’s everywhere in sight. From that healthy person taking the last handicapped parking spot I badly need to get my son out of the car, to the lady at the amusement park telling us that my son has to wait in the one-hour line like everybody else, even though it’s not exactly wheelchair friendly and it’s 100 degrees outside.

Nicky has had to have throat dilatations and hand surgeries since he was 2 years old. We had to do dilatations as often has 3 times a year after his first one in 2000, and the first few years we were able to stay at the Ronald McDonald’s House at Stanford, which was a total God-sent for a couple of nights each visit at most, since the hotels in the area are anything but cheap. When even the Motel 6 charges $100 a night, you know you are in a majorly pricey area. It’s hard enough having to travel 6 hours one way for my son to have a procedure we didn’t want to do but had to, and then to toss in gas prices and hotel costs, it’s like adding insult to injury.

2001 - Nicky at the Ronald McDonald's House at Stanford

In 2004 or 2005 (the nurse wasn’t clear when she relayed this info to me) Stanford became a major transplant hospital and in late 2004 was the last time we were able to stay there. We would be turned down and refused stay ever since. It came a point last year that I didn’t even bother calling. What for, just to be turned down again? No, thanks.
Nicky has a hand surgery this coming Friday we both dread like nothing else and we were told that the Ronald McDonald’s House was now giving EB children priority. I called a few weeks ago and was told to call back this past weekend,  but when I did, to see if they had room, the lady almost laughed, “Oh no, no no, we have no room. We have to turn away 45 families every single night, sorry!” Then yesterday I got a message from someone further reiterating they had no room ‘but things “might” change, and how “they never know”! I’ve gotten this song and dance for seven years. We even got it from the House in Minneapolis. I am sorry, I have to make a reservation somewhere, I need to know if I need to bring sheets and blankets or not, this last minute BS is not working for me. Nicky has equipment, wheelchairs, bandages. Anything dealing with Nicky and traveling is a HUGE undertaking, I need advance notice to be prepared. Would have loved to not have to dip in my College fund for this trip, but I felt I had no choice. I made a reservation and is not refundable. I was a little ticked today when I got another message to call the house and when I called back and got their voice mail I just told them I have no idea what we needed to talk about, I was told twice there is no room for us and there never is, and that I would never bother them again.
But things aren’t all bleak. As a matter of fact, they turned around, giving me a reason to be humble. A wonderful organization called ‘The Butterfly Fund’ stepped in and offered to pay for our Hotel stay for our return trip in two weeks. At that point Nicky will have to undergo a procedure to remove the cast and pins in his fingers and re bandaging, and as per the Doctor, she suggested arriving the day before the procedure and leaving the day after. Nicky’s dad, as generous as always, gave me extra money on the child support check to pay for the hotel & gas. So, I really have nothing to complain about.
Still, dealing with the House refusals was eating up at me for some reason, I needed to know more. For those unsure how this all works, one can’t just stay there for no reason. Your child has to have surgery or a procedure at the hospital which has to be confirmed, and it’s hard to believe that at any given time they might have all their 47 rooms filled with transplant patients. Now, I understand that transplant patients are there for MONTHS at a time, and I know there are other long-term families (long term could be 30 days to 6 months) who must stay for a variety of reasons, from cancer treatments to preemies etc, but beside them, who else stays there? Who gets priority? If my severe EB child can’t get to stay there for a couple of nights for 7 flipping years, WHO IS?

I tried to research the internet about ‘stories’ but I found only two that were a little iffy in my book. This first story was about a boy on Dialysis who had to stay at the House for 8 months because his mom didn’t have a car to drive him. Okay, I understand at first, as an emergency situation, but couldn’t the insurance or some other entity step in to help this family and provide transport? The house in those 8 months had to refuse stay to 240 families in need. Surely there is a better way. The second story was about this Mexican family who lived at the Ronald McDonald’s House for 5 years. Five years seems a tiny bit excessive to me, isn’t it? How about getting a cheap apartment nearby if you think you might have to stick around for half a decade and find some organization to help you with costs? The House had to turn away 1,825 families in need to accommodate 1 family. Seems hardly fair.

I suppose I wouldn’t mind so much my child being refused if I knew stories like these two above didn’t exist, but the truth is, there will always be people who will take advantage and not think of whose place they might take. I will probably never again call the Ronald McDonald’s House now that I know they have to turn away 45 families every day. Until the day comes they expand and renovate the property and double the rooms, our chances are pretty much zero that we’ll ever be able to stay there again, even considering our “priority” status. Further considering Nicky will be 18 in 3 years, he won’t qualify at that point anymore anyway. Oh well. At least we’re not taking anyone else’s spot. Something to be proud of.

UPDATE: As of this morning, Wednesday Jan 4th, the House called me to tell me they magically came up with a room for me. What? Maybe I am weird, but I was actually mad about it because I feel like I am taken for a fool. Unfortunately it came in too late. After the lady on Saturday told me there was no room at all, and the other guy left a message Monday telling me they had no room but ‘you never know’ (as I said, heard it a million times, and after 7 years of ‘you never know’, you don’t believe it anymore), I made a reservation Monday night which is non-refundable. I told the guy that called that I cannot wait until the ‘last minute’ with a child like mine. He told me he understood and was extremely apologetic. Perhaps another child that can walk and does not need equipment or whose entire family can come to help they can wait until the day before or the day ‘of’ to know one way or the other, but as usual I have to do this solo which is a TON of work and I cannot have this added stress put upon me. It didn’t used to be this way, they used to be able to tell you the week before, not the day before. I told him to go ahead and give the room to another family. Nobody can tell me I am taking someone else’s room, that’s for sure.

Happy New Year everyone! Please keep Nicky in your prayers for Friday’s surgery.

God Bless,

.

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My Non-Celebrity Ghost Story

Posted on December 27, 2011 by Silvia

Last year I started watching a TV show called ‘Celebrity Ghost Stories’. I know what you’re thinking, especially the skeptics, but even if only 1% of these stories are true, it’s still a compelling argument for the paranormal. The most touching story I saw belonged to an Italian-American actor called Enrico Colantoni (see it below). I teared up watching it.

This show, which became a favorite of my Connor as well, gives credibility to a perplexing chain of events I briefly talked about in my other blog a couple of years ago (http://ebmom.blogspot.com/2010/01/cant-help-but-wonder.html). Sometimes the answer to the question regarding these events ‘Am I crazy?’ is a resounding YES. Others I wonder why people seem perplexed when I retell the story. It’s not like I am inventing things. I could not ‘make up’ this stuff if I tried. So… here’s the story!

After I moved to a one bedroom apartment with Nicky (then only 2 years old) following my divorce in early 1999, apparently my guardian angel or a spirit of some sort decided they needed to protect me. One night as I was trying to go to sleep in my queen bed I felt as if someone had just lied next to me. I was petrified. I was alone in the apartment and Nicky was asleep. Who the heck just lied next to me? Ever so slowly I somehow mustered the courage to turn around to see who just got into my bed only to find… nothing. Nobody. I could still ‘feel’ someone there though, there was no doubt in my mind. The covers/pillow were not messed up or showed any weight on them, yet I could feel its presence. I don’t know how I fell asleep that night, but somehow I did, and this became a nightly occurence. About a minute or so after I turned off the TV and the lights… there it was. It would never happen if someone was in bed with me, like my husband or my son, but if I was by myself, it would not be a matter of ‘if’, but a matter of when. It became such a ‘normal’ thing that I could not fall asleep until this spirit lied next to me, it made me feel safe. I know, weird, but that’s just how it became. My husband also told me a story of how he felt an angel’s embrace when he was sleeping alone as well before we got married.

Up until this point it all felt very loving all around. I even asked a great friend of mine, who is a little psychic, if she felt anything about my nightly friend, and she did tell me that it was a lady in a flowery dress and lots of rings, who was coming to protect me. Protect me from what I don’t know, but I felt solace in that. I asked my mom and dad if we had any (dead) relative that wore flowery dresses or lots of rings and they could not recall, but I always felt my grandma (Nonna) Stella, my mom’s mom, who died of lung cancer (spread from breast cancer) in 1977 somehow part of my life from the great beyond. I had two different psychic people who never talked to nor know each other telling me they see my Alex (who was stillborn at full term) hanging out with my Nonna Stella as I always felt he would. Alex was the first descendant of my grandma that died so surely she was there to pick him up and take him to the other side. I even contacted the lady they did the show ‘Ghost Whisperer’ about and she told me that babies are always picked up and brought to the other side by a relative, so it all made sense. It could have only been my grandma Stella, as my other grandma was still alive. When Connor was a baby, I would often walk in the living room and notice the swing swinging by itself and then stop as I came in. According to my psychic friend, Alex and my Nonna played with that often.

Sometime in 2009 I was waiting for the spirit to lie in my bed when I heard noises on the corner of the bedroom, next to the door to the hallway. They were fairly loud, so loud in fact they startled me and I immediately thought Connor had come into the room. When the noises stopped and my eyes adjusted to the darkness of the room, it was clear there was nobody there. Finally a little light emerged from the area and it came closer to me, circling the bed and ending at the edge of the bed by my feet. It stopped for a couple of seconds and then it went down and disappeared. I was so spooked I told ‘it’ enough. I’ve watched enough paranormal shows to know you can talk to them and they listen and many times they obey, so I told ‘it’ that I appreciate the protection, but that from now on I didn’t want to see them, I didn’t want to feel them, I didn’t want to hear them, they can still ‘hang around’ if they want and keep protecting, without making their presence known. If they really want to let me know they are there, they could find other ways, such as making me ‘smell’ something or flicker the lights for a moment. I never felt its presence ever again, but I must admit I miss it. I know, maybe I am crazy afterall.

The only other time I felt the presence after that was the night before I wrote that blog, the presence was lying next to me as it used to do and when my husband came home from work I felt it get up and sit at the edge of the bed. After a couple of minutes it got up and left and that was that.

I haven’t seen lights ever since, smelled anything out of the ordinary, experienced flickering lights or felt its or ‘their’ presence ever since, and I like it that way. My plea to please don’t make their presence known worked. That does not mean that every now and then I don’t wish I knew they were around to protect us, especially Nicky, alas, whether I see them or not, Nicky FOR SURE has a guardian angel. I feel it in my bones.

Happy New Year everyone!!

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You have the info… using it is YOUR choice.

Posted on December 7, 2011 by Silvia

When Nicky was born, 15 years ago, the Internet was not like what it is today. I know, it’s crazy to think about it, right? I used to browse ’usenet newsgroups’ and to belong to an email group of any sort you had to send an email to a listserve to join or leave a group. There were very few websites (comparitively speaking) and not many had the internet to begin with anyway. So… it will be of little surprise when I tell you I could not find a single soul with EB or that had a child with EB. Nobody. The Doctor ‘could not tell me’ of other patients because of patient/doctor confidentiality. I was going out of my mind.
I tried to gather as much info about EB as I could, but I could find very little. I knew about the scarring. I knew about the wounds needing moisture to heal properly, I knew about the hands webbing, but not mittening. Heck, I could not even get bandages anywhere, so I resorted at padding Nicky with clothes, clothes and more clothes of any kind so he could not scratch his fragile skin so easily. Wrapping the hands? I had no idea it was needed. I didn’t know about the hands curling and ending up in a stump either. I made sure the fingers didn’t web together when they healed and I thought I was doing a good job, that’s all I knew. 

It wasn’t until a little over a year later that I actually got to meet other parents… and even one sweet RDEB woman, Kelly, that I got a wake up call. Kelly had no hands to speak of. I don’t know how she drove or how she opened anything, and I still could not tell you how she opened the folder she brought to show us some papers, but she did it. I was in awe. One other amazing lady stood in our presence, Sheri Coil. I had had a conversation with Sheri over email for the past couple of months and she promised she would show me how she wrapped the hands of the 3 RDEB children in her care. When I saw the adorable siblings, it was clear they were not a mild case, but they had pretty good hands, so I was encouraged. Lorraine was there that day too, so I got a good lesson in wrapping.

My main concern at the time is that I had no way to get the bandages I needed to wrap the fingers. Insurance flatly refused to cover ANY bandages. I had just come out of bankruptcy court, the most humiliating day of my life, because I had to pay for bandages (not a cheap item by any stretch of the imagination) out of my own pocket, and not just bandages, Nicky had Physical Therapists & Occupational Therapists every week, and many other doctors, such as ENT, Dermatologists and Pediatricians who wanted to see him ALL THE TIME. At $30 a pop, my credit cards pretty soon were at the point of no return.  Bottom Line… I had no money to buy bandages to wrap the hands.

For the next year or so, I managed. I used to cover and massage Nicky’s hands with different oils, creams, anything to keep the dryiness from webbing his hands, and I would stretch each finger for 10 seconds each day. It helped, but not quite enough. By the time he was two his right hand was so stiff he would not use it *at all*, and he’s right handed! It was clear we had to do something. Somehow we got a surgeon involved who did the surgery (and Nicky was his ‘first’ EB kid…ugh) and when we got home we, well, I, started wrapping that hand religiously just the way Sheri and Lorraine showed me. It took a while to get the hang of it, I would say several months even, but after that trial period we figured out what Nicky truly needed and we moved forward. That was the only surgery the right hand ever had, and that was in late 1998!!! 13 years ago. The wrapping did an amazing job in slowing down the webbing and contracting. We found Wal-Mart or Target carried 1in bandages and we bought a few and then washed and re-used over and over and over again. I wrote in the book (not out yet) all the crazy things we did to get bandages those days. I still cringe sometimes.

The left hand was in pretty bad shape by the time we started wrapping so we decided to do a surgery on that hand as well the following year. This surgery though… didn’t go as well as I would have liked or hoped. Because I was working full time and the lady that took care of Nicky while I worked took care of several other disabled children, I didn’t want to burden her with all the EB stuff to top it off. To make a long story short, within 6 months, this hand was gone. The fingers were encroaching the palm and they webbed that way. I was heartbroken.

For the longest time I let it go, I just could not bring myself to try again. Then Nicky started kindergarten and figured out he was different, that his hands were different. I know he was only 5 but he wanted his hand fixed, he was adimant. I vowed to do it right this time. We got Stanford involved and Dr. Ladd did an amazing job, and when she saw me wrap the hand post-surgery she felt confident I could keep it up. This was 10 years ago and while Nicky at this point in time wants his hands ‘tweaked’ a little bit, they are BOTH still in BETTER shape than they were before their last surgeries.

If you have to think about it in any way, think of it this way: wrapping the hands is somewhat like wearing braces. The wrapping literally is a form of physical therapy, because, by using slight pressure the fingers are kept apart and straight. The gauze also serves by giving the patient’s fragile skin a little more strength in pulling and pushing. There is NO loss of textile function

Because of the amazing success of the wrapping I posted instructions that came directly from Sheri and Lorraine on the ebinfoworld.com website (http://blog.ebinfoworld.com/?cat=39) so other parents could try to save their children’s hands as well, and I found it disheartening how every now and again I get someone blabbing how wrapping ‘does not work’,  or how it hinders development etc. I don’t understand why people can be so against something that has been proven to work. Nobody is forcing anyone to do anything, but why the negativity? Why the lies? If it hadn’t worked for you, have you thought that perhaps you were not doing it correctly? Did you ask for help?

Look, I don’t care. Wrap, don’t wrap, it’s no skin off my back, but you have something I did not have: information and bandages. I had neither. I was clueless and bandageless. What you do with the information presented is up to you, it makes no difference to me, but for goodness sakes, don’t invent reasons why you don’t do it, it discredits and insults people who worked hard to present that information to you and tried to do something to help these children. That is worth some respect, isn’t it? Don’t want to do it? Just don’t do it and end it there. Thank You.

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The funny thing about Priorities…

Posted on November 30, 2011 by Silvia

This past spring I did something I’ve been wanting to do for a LONG time. I bought the software and the plugs needed so I could transfer all my old VHS tapes and Hi-8 Tapes from my camcorder to my PC so I could make DVDs out of it.
I had bought my camera back in 1992, but I had borrowed my BIL’s camera (a cameraman by trade, who even worked for several TV stations) well before then, so I had several videos from the late 80s and early 90s.
I didn’t realize this decision would make such impact on Nicky. To be able to see mom and dad before he was born and see videos of himself as a baby and toddler truly gave him a glimpse of things he was unaware of. I have a LONG way to go when it comes to transferring all the videos, but Nicky really enjoys what he has seen so far.
Truth be told, for me, it’s like watching them for the first time as well. I believe I only saw these movies maybe once or twice at most (if ever!), over 10 years ago, and for the most part, I don’t even remember taping these things. It’s like having a window into the past. What’s most amazing for me is seeing Nicky as a little boy… oh, how many things have happened since then, at times it’s hard to watch knowing what laid ahead.
If I had known then what I know now, would I have done anything differently?

Wether I like it or not, Nicky is 15 now. Part of me is elated he’s doing okay, I feel confident he’ll make it to see some sort of treatment, we’re SO CLOSE… but part of me is scared of the future. I’ve always been a little scared of the future as far as Nicky is concerned, but watching these vidoes makes me more so. I don’t know why. Nicky has some wounds nowadays that are just bizarre looking. They raise up and come down, looks nasty one day and fine the next. Walking seems to be the hardest thing. His feet are raw and awful and no matter how much I wrap them, he still gets blisters. It’s awful. Have I mentioned lately how much I hate EB? Hate does not even seem like a strong enough words. It’s hell, pure and simple.

Thankfully there’s Connor. He is such a happy-go-lucky child that I can’t help but smile when he’s around. Sometimes I fear he’s growing up too quickly, he has to help his dad doing things he cannot do, he has to help his brother do things he cannot do, yet he’s the cuddliest, funniest kid. I know Connor is improving Nicky’s life as he is ours, no matter how frustrated he gets at him sometimes. I am very happy to be able to be home when he gets home from school, to me it’s so important. Quantity, quality, whatever. I am here when my kids need me, that’s what’s important, that’s my priority #1.

It’s a funny thing about prioriorities… many moons ago, when I was 21, I had someone in my life which I rarely saw and never talked to, but whose feelings about me were well known. She would bad mouth me to anyone she talked to and even invented things to make me look bad. Sad thing, some people believed her. At one point, at one encounter I will never forget, she flatly told me everyone hated me, including my dad (right… hmmm hmmm, I dare anyone to ask my dad how he feels about me and hear his answer, or better yet, had been there when I arrived in Italy this past summer and how long he hugged me and would not let go. He sure hates me… whatever) and she was extremely judgemental about everything in my life. I don’t know what business it was of hers, but that’s how it was. She was nitpicking my life and felt I was beneath her. That’s how she always made me feel, as if I was unworthy to even be in her presence. I tried my best to avoid this person all my life, but as with any relative, somehow her name resurfaces over and over again.
On that fateful day in 1985 she told me, in her superior tone, how different people have different priorities, and according to her, my priorities were skewed. Fast forward… ohh… 26 years. Yes, different people, different priorities indeed. While I am taking care of my family and being home for my children, her children are being raised by nannies, she has cooks, maids and more. She is not home much as she has a demanding and important career, her husband even less. I am not judging her, she has judged me plenty, I just wonder sometimes why someone who yaps about priorities and judges others constantly (oh yes, I am not her only target by far) might take a little time to take a look at herself in the mirror. It’s okay, I wish her the best money can buy, we all know she flaunts it. What matters to me is something far more valuable. Family.
There is an old saying that states “You’ll never see a U-Haul behind a Hearse”. I have no idea who might have first said it, but it conveys something that speaks to my heart. Of course, the gospel statement of “what does it profit a man if he gains the whole world and loses his soul?” says it so much better. Why would people waste their time judging others? Bad mouth others? Invent stories about others? Is it for personal gain? “What’s in it for you” is something Dr. Phil talks about constantly. What’s the payoff? There is always a payoff, no matter how hard it is to see.

I guess it’s true that different people have different priorities, the main goal is not to judge people by ours. We not know their life, their struggles, their wars. From a distance something may look a certain way when deeep inside they are completely opposite. Remember that people always put their best foot forward, so we only see what they allow us to see. A friend or relative may look perfectly content and happy when all along they’re hiding a sad family struggle. The obese children our friends have may have a health condition we’re unaware of. The sad or jumpy teenager may hide from us her abuse struggles. We don’t know. We can’t know. In doubt, always assume there is a reason why people act a certain way.  I am still learning this. Surely my relative has some unknown issues, problems, struggles she’s been carrying around for years and years I clearly know nothing about. But, for goodness sakes, don’t invent things about people to make yourself look good! If you have to invent things about others to make yourself look better, perhaps the time will be better spent looking at yourself in the mirror and figure out what needs to change. The answer is not in others, it is in yourself. As Wayne Dyer said so eloquently “When you judge another, you do not define them, you define yourself”.

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Something to be Thankful For

Posted on November 23, 2011 by Silvia

With Thanksgiving just a few hours away I’ve been pondering the words of a few relatives lately, relatives that I have a hard time speaking with because joy, thankfulness and looking for the silver lining no matter how dire the situation seems to not be part of their psyche. I would be ok to listen to their complaining if it was seldom, warranted and they took my feelings into consideration, but they never do. Their wining is constant, about small stuff, they offer no support nor recognize my family’s health issues and what’s worse, if I dare say that whatever they are dealing with or dealt with is minute compared to my situation, well, I don’t dare say that. Mainly because it’s not worthed. But… think about it. Would you complain to a child with EB about your scar? Would you complain to a homeless man about your broken living room table? Would you complain about a cold to a man on his death bed?

Truth is, there is always something to be thankful for. ALWAYS. George Bailey was always such an adventerous spirit, but when none of his dreams came true and was stuck in Bedford Falls, gloom and doom took over. It took a dire financial situation to bring him to the brink of contemplating suicide. He was so blinded by his daily grind he had stopped looking at and appreciating what he did have. He might not have had the chance to travel the world or have the career he aspired to, but he had a loving wife, 4 wonderful healthy children and more friends and family members that loved him than anyone could ever hope for. When Clarence showed him what the world would have been like without him finally the light switch turned on which allowed him to see, and when his brother Harry flew through a storm to be with him and announced to him he was the ’richest’ man in town, he could not have said more prophetic words. Truthfully, George had so much to be thankful for.

It’s no surprise to me that ‘It’s a wonderful life’ is my favorite movie of all time. I’ve needed the message it conveys many times in my life. I’ve seen other great movies with similar messages, such as ‘Family Man’ with Nicholas Cage, or ‘Mr. Destiny’ with Jim Belushi, but I guess Mr. Stewart holds a special place in my heart. Keeping messages like these running through my psyche, I try to go through each day searching the silver lining on everything. Going with the flow. What can I learn from this? What good can come out, and if none, just accept and move forward. This is of course easier said than done on many occasions and I do find myself in the gloom and the doom at times, but somehow I always get myself out of the funk eventually.

For this Thanksgiving I am thankful that I am healthy and I am able to care for my family. I am thankful that despite setbacks, Nicky is doing ok for the most part. I am thankful that my husband is making strides, however slow they might be. I am thankful my 8 year old is so funny, helpful, cuddly. I am thankful my parents are healthy and so are my sisters and all my nieces and nephews. I am grateful for all my wonderful friends who help me daily searching for that silver lining. I could go on and on.

My new resolution for the new year is finding one thing to be grateful for and write it on my calendar. What are you grateful for?

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