NEW BLOG

Several months ago... OK, almost a year ago, I revamped my silviaskingdom.com website and substituted the entire content with a BLOG style website. It was a crazy move, but one that was way overdue. While most of the content will most likely never again reappear (content included old pics and old updates on the kids, and also American Idol & B&B recaps, wallpapers, icons and incredimail letters), I wanted to switch the reason for the website to a more personal one. I have a different blog at Caringbridge for Nicky's updates and my blog @ sleepingangel.com is for my graphic design,  so I can concentrate on my books and my EB awareness ventures on my personal one.

http://blog.silviaskingdom.com/

Thank you!
~Silvia

And that's how it is...

     Ever since losing Alex at full term back in the dark ages of 1995, I've been looking for stories of other bereaved parents who might have shared their stories in books. I became particularly interested in celebrities that have had losses, but much to my dismay, none had written autobiographies. I purchased the book of the biography of Jackie Kennedy once because I knew she lost a baby at birth-the same year her husband was assassinated, but I didn't realize this: there is a BIG difference between biographies written by a third person and autobiographies, written by the person him or herself. This biography of Jackie was great at giving 'dates' and what happened and what not, but did not really delve into the feelings, on what happened to her psyche. How in the world did she cope when within six months she lost her child AND her husband? This is the reason why I am obsessed with biographies, I've always been interested in finding out how people coped when life gave them lemons. Gigantic lemons.

     Just recently, as I am writing Alex's story for the book I am writing about Nicky's life, I did more research for celeb's autobiographies to see if I could find some gems previously unreleased. While I did find a few released since 1995 of other moms who speak quite generously and eloquently about it (and I read those books in record time!), still, celebs who have had stillbirths are rare, but there are a few that I WISH would share their experiences. I know, how selfish of me! LOL. Probably the most notable in recent years has been Katie Segal, whose pregnancy had been written in her show Married with Children, and when she lost the baby they had to pretend Peg's pregnancy had just been a "dream". Common Katie, we want to know more. Another famous celeb who lost a child at the 8th month of pregnancy was Keanu Reeves' girlfriend Jennifer, and Jennifer herself died in a car accident two years later. I am dying to hear a father's point of view. I did get a morsel of his feelings in an article I found online:

“Grief changes shape, but it never ends. People have a misconception that you can deal with it and say, ‘It’s gone, and I’m better.’ They’re wrong.

“When the people you love are gone, you’re alone. I miss being a part of their lives and them being part of mine. I wonder what the present would be like if they were here—what we might have done together. I miss all the great things that will never be.

“Damn it! It’s not fair! It’s absurd. All you can do is hope that grief will be transformed and, instead of feeling pain and confusion, you will be together again in memory, that there will be solace and pleasure there, not just loss.”

“Much of my appreciation of life has come through loss,” he said. “Life is precious. It’s worthwhile.”

Common Keanu. Autobiography please.

 Did Oprah write an autobiography? There are so many out there about her, but not sure which one she wrote or which one she speaks about the baby she lost.

     So... in the end I did find a couple of books, autobiographies of "celebs" (although I didn't exactly know who they were prior to my research, but it's okay) that speak about their losses. Here they are:

     Kym Marsh is probably unknown to most people in the US, but she's probably a well known name to the Brits. According to wikipedia, she first came into the public eye in 2001 after appearing as a contestant on ITV's talent show Popstars where she made the final line-up for the band Hear'Say along with four others. Marsh left the group in 2002 and now plays Michelle Connor in the long-running soap opera Coronation Street. On 12 February 2009, Marsh released a statement announcing that her son Archie had been born 18 weeks early on 11 February, and had died moments after birth. Her book recounts her difficult childhood, her raise to stardom and the death of her son.

     Katherine Graham was an American publisher. She led her family's newspaper, The Washington Post, for more than two decades. She has been widely described as one of the most powerful American women of the twentieth century. Katharine had to endure the stillbirth of her first child, and several subsequent miscarriages.

According to a reviewer, she does speak of her losses in her memoir, and I do hope she speaks candidly about it, she does have 642 pages to do it! This book is next on my list to get.

    

     This is the book I am reading right now, "Life Touches Life" by Lorraine Ash. I love it because her story is eerily similar to mine. Gives me the chills just to read it.

     Another book I just finished is the one below from Elizabeth McCracken, 'An Exact Replica of a Figment of My Imagination". Very neat title, the story though is hard to follow at times, but it's okay, it jumps around from the pregnancy she lost at full term (once again, very similar situation as mine) to the pregnancy a year later where she gives birth to a healthy baby.

     I have a few more in my 'wish list' but I will need to read more about them before I get them. I have very little precious time to read and I alternate these grief books with autobiographies just as not to get too depressed, but my next autobiography is

Mackenzie Phillips, so I am not sure how cheerful that book is going to be!

     One more note about grief in general before I end this. For years now, since Alex died, people have told me 'God does not give you more than you can handle'. Please everyone, stop saying that to me or to anyone. It's simply not true. After Alex died I remember going to the newslist alt.support.grief and I read TWO posts at a couple of months distance where mothers whose children had died committed suicide to go be with their babies. God gave them more than they could handle. I stopped reading posts there after that because I simply could not handle it. There is also a story in my family that deserves to be told and I recount the details in my book, but I will mention part of it here just to help people understand what I am trying to say.

     My grandpa had an older sister, Maria Corradin, who married a wealthy farmer and they had 4 boys. In 1919 the whole family was infected by the 'spanish flu' (which killed millions around the world) and in a matter of WEEKS my great-aunt Maria lost her husband and all 4 of her boys. When she came home after the last funeral of her oldest son, she went 'numb'. I researched this and what I surmise is that she either had a psychological shock or suffered an acute post-stress disorder of some sort and while she could do the "basics" of eating, dressing etc, she was unresponsive otherwise. She lived well into her 90s and died in the late 1970s, so she lived 55+ years in a rest home, unable to fetch for herself. God did give her more than she could handle.

     I understand WHY people say that, they want to give people some imaginary strenght, ohhh 'you can handle it, chin up', but while I am certain it's meant to encourage and it's given with the best of intentions, it's almost a dismissive statement. I love THIS BLOGGER for example, who explains what's really in the bible.

I think a better way to express the sentiment that people are trying to get across with this is something more along the lines of, "God won't abandon you in the hard times" or "God is still with you." Really though, even better is just to let someone know you are there for them, offer your help, and listen to them. The people I have appreciated the most in hard times have been the ones who said the least, usually. They were just there for me.

Hugs,

Silvia

Random thoughts...

I should be studying for my Math Test tomorrow, but instead I am sitting here with too many thoughts in my head to concentrate, so maybe if I write them down I can make room for math in my brain? Ha Ha. Nobody reads this blog anyway, so, whatever, it's a good brain excercise.

My little Precious Prius (which I love, yes, Nick, I do, thank you) had a little problem with the battery (long story... moral is, if you have a hybrid, make sure all doors are always tightly closed! One of the doors got left "barely" ajar which completely drained the battery-sigh) and I got a chance to have a nice chat with the tow truck driver, which gave me a ride to the dealership, and to this nice man who gave me a ride back home and then a ride back to the dealership to pick up my car when it was ready today and I realized something. I have nobody to talk to. Seriously. Both the tow-truck guy and the driver for the dealer were so engrossed about my story about Nicky's EB and Greg's strokes and everything else in between, I mean, am I THIS lonely to struck conversations and tell my life story to complete strangers? I remember when I used to work at Babbage's and certain customers would come in very often just to have a chat with me and I often thought they were probably very lonely people. One particular customer took me out to Sushi after work even just to be able to talk to me more about his problems getting his new wife back to the US from China and more about his life story. Have I become one of these people? Hmmm... I think so. I am not alone, but I am lonely, that's for sure. Oh well. That is what I get for having lived in two different countries and in 4 states, I have friends everywhere, but not here, and I do mean friends you can go out with for lunch or for a drink. I was telling mom I have no shortage of friends per se, it's just that NONE of them are HERE. It's okay, I'll muddle through, not complaining at all, just stating matters.

I found that lately when I get mad about something, I go write in my book. It's extremely self-therapeutic. If I get mad is because apparently it strikes a nerve, which brings up a memory in my life, and so it goes. Speaking of which.. I cannot WAIT to talk to my dad about this Osama Bin Laden deal and get his prospective on things. My dad, which I respect and adore more than words can say, was a 15 years old teenager in Italy when World War 2 ended and Hitler committed suicide and Mussolini was executed in 1945. I am quite appalled to be honest when I hear people comparing and equating Al-Quaida's happiness when the twin towers got hit with Americans being happy when they heard Osama was killed. Frankly, I don't see the comparison at all. It's like comparing the Japanese being happy when they bombed Pearl Harbor and everyone being happy when Hitler died. The two 'happiness' can't truly be compared because one is a happiness out of pure evil, while the other is from eradicating evil. I really want to ask my dad if anyone in Italy was 'sad' that Mussolini died... I get a feeling he'll have a good, hearty laugh!! My dad is uber-political, and I find it interesting how, even though I never even knew what 'party' he belonged to (and in Italy in the 70s they had 30 or so parties!!!) when we compared notes in the late 90s I was definitely my father's daughter. Then again, having been born and raised in Europe does bring me a certain prospective on things that cannot be easily explained, just lived.

Okay, I think my head is clearer now. Bring on Factoring Out Equations! Ick.

150+ Free American Idol Incredimail Letters!

I posted a link on my personal website on where to download all the Incredimail Letters I made for American Idol from 2004 to 2010 ...

CLICK HERE 4 DOWNLOAD LINK!

I counted 153 roughly. These letters were on that site but since the revamp I had to take them down, so this is the easiest way for me to make them available once again to everyone. The image I made shows a bit of the preview of my work.

All my other Incredimail letters (quite a few I made from 2004 to 2010) are on my website at the following URL: http://sleepingangel.com/graphics_im.htm

The only ‘Thanks’ I ask is if you follow and LIKE one of my two Facebook pages, the first one EB Info World deals with news, awareness and support for my son’s disorder, Epidermolysis Bullosa. The second one is for my AVON business, if you don’t have an AVON lady yet, please let me be yours! I had to quit my job to take care of my family full time and every penny helps. By liking my AVON page you will be the first to find out about new deals and freebies.

THANK YOU and ENJOY!

Some of my photography...

ebmom1's photostream on Flickr.

Will upload much more soon!

Silvia <3

Man, I feel old!

Okay, sure, my 47th birthday is just around the corner (yes, I've never been one to hide her age, bring it on!), but I sure never expected to see things I own, or that I remember clearly, in a museum.

But, I digress. I wrote about our trip to Stanford in my blog at Caringbridge (you can read it here http://www.caringbridge.org/visit/nickyz ) and how we were all of a sudden left with a whole day to do... nothing because they cancelled Nicky's surgery. If it would have been a great sunny day, I would have taken Nicky to San Francisco or the beach but it was raining cats and dogs so I felt doing something indoors would be more appropriate.  I googled museum on my iPhone and the Computer History Museum popped up, just a few miles from the hotel, and it looked like it had a video-game section, so Nicky was sold. When we got there the clerk told us that they were having some 'glitches' today and the entrance would be free. Glitches? I noticed none of the monitors were working, monitors that usually have some mini-documentaries playing throughout the entire exhibit so I was a little bummed, but the glitches were fixed within the hour, so then we tracked back. What a cool place!!!



This gadget here caught my attention. It was a programmable calculator made in 1965 by a company called... drum roll please... OLIVETTI! Yes, Olivetti is the 'main' company in my hometown of Ivrea in Italy, my dad worked for Olivetti for 50 years! This calculator was the first of its kind because it had the ability to store programs and data on magnetic strip cards. It was the very first calculator that was also a computer of sorts, it sold 40,000 units! I need to ask my dad if he remembers it when I talk to him today.

You will never guess what this silly looking thing is. In 1969 Neiman-Marcus offered this 'kitchen computer' in their Christmas catalog! For $10,600 you got this computer, a cookbook, an apron, and a two-week programming course. It had a built-in cutting board and it came with a Honeywell 316 minicomputer. The interface consisted in binary switches and lights. None were sold, LMAO!

In the early to mid '90s I was a manager for a computer software and videogame store called Babbage's (only a few stores survived the merges) and I remember having all of these software packages on my shelves and explaining to people what 'Windows' was. Isn't that crazy?

The history of PAC-MAN. Nicky basically "parked" in this section of the museum, they had areas that explained the histories of some of the games and they had in display every videogame system ever made! They even had games you could actually PLAY, so Nicky loved it. While he soaked all of this up I roamed around the museum looking at what he considered 'boring' stuff such as the computers made for NASA, Mainframes, old calculators, old punchcard machines and tons of other amazing stuff. I was completely fascinated to look at these old looking things and calculators as big as a room. I actually spent quite a bit of time in the 'Internet' area. They had a slideshow of website's main pages as they appeared in the 90s. Sad part is, I remember all of them! Sigh.

In the gift-shop I spotted Computer Engineer Barbie. LMAO!

Later at Target I spotted "Kitty Care Vet" Barbie and "Pizza Chef" Barbie. Didn't realize they were making all there Barbies nowadays! I have boys so I am completely out of the Barbie loop I guess!

On our way back home, passing through Gilroy, I stopped at a little Farmer's Market to get some fruit and I asked Nicky if he wanted to try Garlilc Ice Cream. Uhhh... no. Even I passed. I will try anything but even I had to pass on this one!!

The last stop was at Casa De Fruta, we love this place. I took this pic here, don't they look delish?

Photography and Photoshopping is really helping me right now so I am doing more and more to help me get out of my funk. I know that if it wasn't photography it could easily be food, or alcohol or drugs, so I try everything I can to stray from the obvious ways people react to severe depression by doing something I love, even if that means the laundry gets backed up or whatever it is does not get done. Nicky's EB is taking it's toll on him and me more and more as it has been for the past 14 years, Greg's recovery is slow and frustrating as heck, his mood is really awful at times and even Connor has problems at school, he told me the other day reading to him is 'torture', which would explain why he's failing reading and his teacher and principal are considering retaining him and make him repeat second grade. It may be my fault, I don't read to him enough, I wish I had someone, anyone, that could help me with him, I feel as though I am so busy with everything else he's left behind. Even though I am having a hard time keeping up with my school work (mainly for my math class), dropping any of my classes, as my husband suggested, is completely out of the question. It's the only thing nowadays I look forward to. I look at other people's lives and they seem so simple, their gripes are so minute compared to the burden I have to carry every single day, a burden I did not cause. I have questions for God, tons. I don't really ask 'why me', as there are plenty of people dealing with children with health issues, I just wonder why he had to throw Greg's enourmous health issues in my lap as well. Don't I have enough on my plate? I spend so much time changing bandages and taking care of Nicky's needs that many times I am left with very little time to take care of Greg's and Connor's. I want to be the best mom I can for him, I try so hard to do everything for him, but there is only one of me! THERE IS ONLY *ONE* OF ME! I can't do it all! Why God? WHY???

Tears are streaming down my face and it's a good thing. I've been trying to cry for the past several days without success. Thanks for listening and thank you for letting me vent.

{{HUGS}}

Count the Waves Freebies...

Hey everyone, I finally have something NEW! Took me a while, but I've truly forgotten how much doing this kind of stuff really relaxes me. I will try to have new stuff more often.

What you see above is a preview of a WALLPAPER I made. You can download it HERE.

For the SCRAPBOOKERS out there, I have saved the quote as a free WORDART. You can download it HERE.

Finally, I also made this into an Incredimail Letter... You can download that HERE.

Please enjoy! No need to say 'thank you', but it would mean a LOT to me if you LIKED my AVON page on Facebook!!!

God Bless!

Only 8% Irish?

As everyone that knows me knows, aside my passion for vintage photography and photography in general, genealogy is absolutely fascinating to me. My genealogy is fairly straight forward, I've been able to trace all branches to my family tree to the 1800s, and some even as far back as the late 1700s, and I am still in Italy. There is no " I am 1/4 this and 1/8 that" for me, I am 100% purebred Italian. There are some mysteries though... like the famous heirloom ring that my cousin has, supposedly my aunt was given this ring who belonged to my great-grandmother, my father's father's mother, and which has been inherited from the 'female' branches, which would mean at one time it belonged to a gal, my great-great-great-grandmother whose name was Lucia Callegari, born in the late 1700s. I did find a Lucia Callegari born at the same time in some castle in Austria but I don't know if it's the same person. That part of Italy at that point in time was part of the Austrian empire, so... hmmm? I would need to head back to Italy to research further and find out more. Another mystery that might take me out of Italy is from my mom's side. This beautiful woman in this picture was my maternal grandmother's mom, her name was Carolina Ariano. Supposedly, either her family or her husband's family was from Montenegro, which is an absolutely breathtaking area on the Adriatic sea, north of Greece, which used to be part of the former Yugoslavia. Of course I have nothing to substantiate this claim by my uncle, who is only retelling stories, but that side of the family is very dark hair/skinned, so it would fit, who knows?

Keeping this in mind, the genealogy of my children is something I am also quite interested in. Nicky's dad genealogy is also simple though, his mom is Italian (born in Italy and all) and his dad's family moved to the US in 1938 from Checkoslovakia, in a village that is now in Slovakia. So... Nicky is 25% Slovakian and 75% Italian. Done. Connor though... holy mamma.... I call Greg my mutt because... well, that's what he is, a mutt. The former wife of one of his cousins did his dad's genealogy and it's quite extensive. I was able to expand on it and find tons of records from censuses, but the results are as muddy as ever. Poland, Germany, Ireland, Spain, and many branches we can't even trace back to Europe, although with last names such as Crabbe, Simmons, Bowen, Medler & Stanley, my guess is that they belong somewhere in the UK or Ireland... no? Greg's mom's genealogy is a little simpler, but only from her mom's side. His mom's parents came to the US from Poland in the early 1900s, so his mom is 50% Polish. His grandpa's side though is probably as American as apple pie, who knows where they all come from originally, I can't trace anything back to any other country. I am 'assuming' Anderson is a Swedish last name, but all the other last names involved seem once again either from the UK or Ireland. We have Aldrich, Whitmore (Jacob Whitmore was a Doctor in the mid 1800s in the New York area!), Culver, Clark... one lonely little branch, which would be Greg's great-great-great-grandmother was born in a little city in Ireland called Waterford. Her name was Eliza O'Rourke and her dad was Michael, born there sometime around 1775.

So, what does this all mean? I broke it down in percentages. Greg is 37.5% Polish, 12.5% German, 8% Irish, 1.6% Spanish and... a whopping 40.6% is 'unaccounted' for! Okay, the most unreal thing to me is that he's only 8% Irish. I don't buy it! Greg is covered in freckles, especially on his shoulders and chest, and that is an Irish or perhaps Scottish trait if I ever saw one, even Connor has little freckles on his nose, so there must be more "Northern Europe" going on which in my view takes up probably a BIG chunk of that 40.6%.

My little Connor, hence, is 50% Italian, 18.75% Polish, 6.25% German, 4% Irish, .8% Spanish, with 20.3% unknown, most likely "all" Northern European.

I wonder what my Grandmother would think...

This is one of the last photos of my grandmother Stella, who succumbed to lung cancer in 1977, lung cancer which had spread there from Breast Cancer, despite the double mastectomy she had to endure. Nonna Stella (as I call her-Nonna is Italian for Grandmother) was my mom's mom, and if she had been alive today she would have just barely turned 102, as her birthday was on January 24th, 1909.

My mom was very, very close to her, she was the one that always took care of her along with, at times, her sister, my aunt Marisa, which I adored as she was my Godmother and always loved me unconditionally. I miss her too, she passed away unexpectedly last summer. Sigh.  

Nonna Stella was probably one of the sweetest people I've ever met, very family oriented, very loving and caring. A good cook too! The one thing I never understood though is how an amazing lady like her could have a son (my uncle) that is probably the least family oriented person I've ever met. Growing up we occasionally met his children (my cousins afterall) but there was never that lovey-dovey that I thought "should" exist with family, and that surely exists with all my other cousins and even second cousins and assorted family members and many of my in-laws! To me, family means 'something', but sadly to some it doesn't. I recently found my 'so called' cousins on Facebook, tried to befriend them, perhaps, in my naivetee, try to connect on some level, even though we haven't seen each other in 30+ years, and while one added me, the other one denied. Okkidokki. The one that added me did answer to me on occasion when I would ask him a question, he never attempted to have any sort of conversation with me, I was the one initiating as usual, and then out of the blue he unfriended me. I wonder what my Grandmother would think about that.

Admittedly, I am probably at fault here. I give people too much credit, I expect too much. Even with my ex and current husband's families I feel I am the one trying to make the connections at times and I have often had the door slammed in my face. I have found some of their family members quite lovely, and some, as in my family, are like 'who are you? Go away.' So much for 'family'.

Why am I like this? Why can't I be like everyone else and not give a shit? I wish I could have a talk with my Nonna about this and see what her thoughts are. My dad thinks everyone should be like me, more caring, trying to reach out more, how everyone has something to learn from me, but maybe he's just saying it. I don't know. All I know is that's how I am and who I am, but one thing is for sure, once you unfriend me or refuse the connection, cousin, the ball is in your court. If you never contact me back, my conscience is clean. I tried. I hope Nonna Stella knows that.

Well, hello!!

I just finished digi-scrapping 1978 so I figured I'd post a lonely page waiting to have time to upload them to Shutterfly for my book and to Fotki for safekeeping. God forbid I lose my work!

This page I made, no quickpage! I am so proud of myself, LOL. These photos were taken in Italy, at a beach resort in Senigallia, still my favorite Italian vacation spot by far. I look at these photos and to be honest it's hard to believe this was... gulp, 33 years ago. Good grief.

Next week I'm starting my Photoshop & Digital Photography class at the College for my degree, so as an effort to put "my all" in them, I will use my own photos and then manipulate them in Photoshop by modifying them and add quotes in them and then make them into either scrapbook kits, or Incredimail letters/tags etc. wallpapers or whatever I come up with and then post them here. I really need to use my skills if I want to get better and better and better at it, and since my degree, future business and livelyhood will need to rely on my passion, so be it. It's a nice distraction from my daily life.

I know that most people are surprised when I tell them my degree is NOT in Nursing! Oh no, thanks. I am a nurse every single day to my son and I don't enjoy it one tiny little bit. It's a departure for my husband, since his sister, daughter & ex-wife are all nurses. I am more the creative type, I love beautiful things and I want to share beautiful things. Just me! I wish I had more time to devote to this kind of stuff because it truly makes me happy, but there are days where EB just overwhelms me. One would think that after 14 years it would just get easier, but it's just draining and relentless. Nicky's at the age where parents of normal 14 year olds have a little independent person on their hands and Nicky is everything but independent and will probably never be. EB takes a toll on everything and everyone. I can't remember when was the last time I went out on a 'date' with my husband... 2008? Honestly, I think since we got married 8.5 years ago we've gone out to dinner 5 times. There is no family here from either side and also from Nicky's dad's side and all my friends are everywhere but here, so we're in it alone. I guess people might think EB goes away or gets better, well folks, it doesn't. It gets worse. I think at this point I got Nicky pretty much 'stable', but it's a fight every single day, with every new wound, every new surgery, medicines here, therapy there, it's never-ending.  After 14 years I've learned to manage my time, but if I have to pick between cleaning and have some time for 'me' on the computer, I chose the latter, because I know it's less costly than anti-depressants. This does not mean my house looks like a pig-stie, let's just say I pick my battles. Kitchen and Bathrooms are always clean and the laundry is always done, the rest, it comes and goes. We could use some major help, but we don't have it and that's that. I've learned to live without it.

Well, I am off cooking for the Superbowl! Go Steelers!!!

It's been a while...

It's been a while since I posted, and while my opinion about the enourmous shortfalls of the American Health Insurance industry continues to plague my life in ways unimaginable to most people, I try as I might to stay positive, to keep my mind busy, to try to busy myself with things that can improve my life. All my life my glass was always half full no matter what, and it still is, despite the way life keep trying to bring me down.

I was elated yesterday when I found out the advancements of Stanford in their genetically modified skin grafts to help RDEB patients like my son, I was able to see the lecture given by Dr. Lane at the Debra Conference this past June just yesterday and I was thrilled when he mentioned this 'patient in Europe' and how his graft is still enduring after nearly 10 years. I know this patient! I talked to him during Xmas 2001 right after he had the graft done, he's a sweet Italian guy that lives in Turin with Junctional EB. Well, they will start the trials of these grafts in the Spring in adults with RDEB first and if they work well, they will work even better in younger patients, which will be next in line. I found it kind of funny how the past couple of months I've said over and over again to anyone who will listen how if only we could get Nicky's knees, feet and upper arms 'forever' healed his life would improve ten fold and this might become a very real possibility within the next couple of years! This is just the 'hope' we needed to keep going, to keep moving, since the transplant at this point is basically an impossibility. I don't fault nor judge anyone that wants to do it, but it's simply not for us.

Let me say this again... I am NOT a critic of the BMTs. I absolutely love Dr. Wagner and Dr. Tolar, I think they are the most inspiring and caring Doctors I've met in a long time and I do hope their procedure improves with time so it's safer for the patients, and you will never hear me say anyone is crazy for trying it, especially those who have a 'sibling match'. My heart bleeds for kids with EB, and especially those with the fatal Junctional form and those with RDEB like my son, it's a horrific, horrible disease. If it feels right for you, do it. At this point, it's not the right thing for Nicky, and Nicky is old enough to understand how it's better right now for him to wait for the skin grafts. It's his choice. And that's that.

I can't or, rather, won't say that to EB groups because I have a hard time with 'support groups' or 'fan groups' of any kind. The hate that goes around is horrible. I could sit here and tell tales of all the people who are mad because only the worse forms get the attention or those who feel horrible because they are worse than anyone and the drama and bad mouthing that goes on is now beyond my level of acceptance. I've spoken and described in detail on a private blog about the way I was used and abused by a group of people in the EB community which is the reason why I stay away from their 'drama'. I have enough drama in my life without being in the receiving end of theirs. I thought though that 'fan groups' wound be fun. I was incorrect. I recently joined a fan group of a particular show and the only posts were those from people who think nothing of using profanities and hateful speech and derogatory remarks about this character or that actor, it's absolutely horrid, and when I called them on their hate, they called it 'their opinion' or their 'freedom of speech'. No thanks. Hatemongering and fearmongering is not my bag. Period.

I promise to start using this blog more for my creativity in the future. In February I will start taking two classes toward my degree that will enable me to share some of my creativity, which include digital photography and advanced photoshop. I know I have a lot of 'fans' of my Incredimail work (bless their hearts!) so I will start making some of those again in the Spring as well.

In the meantime, if you would like to help me out, since I had to quit my job at Target so I can be at home more to take care of my husband post-strokes, Nicky and his online/home-school and my little guy who is only in 2nd grade, please join my AVON Facebook page which includes deals and an inspirational quote of the day! Here's the link to join now!
http://www.facebook.com/AVONbySilviaC

Thank You and God Bless!!

Nicky's journal...

I just updated Nicky's journal... very personal stuff. Treat with kindness.
http://www.caringbridge.org/visit/nickyz/journal

Yes, it's THAT bad. Period.

On our way home from our umpteenth FAILED appointment to see the Phisical Terapist (oh man... it's a long story and simply a complete joke... will explain further down in this blog) my husband said to me:"Until I had my strokes I had NO idea how bad the 'Health Insurance' system of this country is". Isn't that how most people are? Until they feel it on their OWN skin, somehow, everything seems just peachy, anybody that complains are just 'whiners'. Right?

I had no idea either on how bad the Health Insurance system of the US was either, my first taste was after Alex was stillborn at full term. At the time we had a PPO (where the insurance pays 80% of the total bill), we came home from the funeral and in the mail there was a bill for $2,500. Yes, you read that correctly. We had just BURIED our son and now we had to pay $2,500 for a dead baby, which was 20% of the cost incurred in the hospital and for the prenatal care. Lovely, no? Talk about kicking and slapping somebody when they are down. Being down is an understatement by the way, I was downright destroyed.

But... that was only a morsel compared what we would experience after Nicky was born. I remember vividly , meeting with the dermatologist and him teaching me how to change Nicky's bandages. Where would I get the bandages, I asked? Oh, he said, the insurance has already approved 4 visits with the Nurse and she'll bring the bandages to you. She did, and that was great, but after that? We were on our own. We scoured medical stores and got some bandages donated, the Nurse had brought us tons of extras, but they were extremely expensive and it was clear from the beginning that we would have to wash, re-roll and re-use because the insurance flatly REFUSED to pay for them. Our income had already been slashed in half since I had to quit my job to take care of our son, it looked already as if we were going to lose the house and we had to sell one of our cars, how on earth could we afford $1,000 worth of bandages EVERY MONTH?  "They are an over the counter item" was the insurance's excuse. Right. It's ONE thing to buy bandages for a burn that is temporary and it's going to heal, it's a completely DIFFERENT matter when there are chronic, ongoing wounds. The insurance and everyone that worked there could not care less. Appeals were denied over and over again.

Although the bandages situation was our biggest problem, that was not the only one. When Nicky was 4 months old we had an appointment with the dermatologist that diagnosed him and we had a million questions for him, and he had very few answers. Who could blame him? RDEB is a one-in-a-million condition, it's not like a dermatologist sees that many patients with it, even though he was "the" expert in the state of Arizona (and I called EVERY pediatric dermatologist in Arizona, so I know that to be true). He told us we had to go to Stanford to get our answers. Stanford has an 'EB' clinic once a month where they see patients, so we got a referral for them. Surprise surprise... it was DENIED by the Insurance!! What?? When I called, the snooty lady asked me why I had to take him to Stanford, if there wasn't "another" Doctor in the state that I could take him to!! Right!!! Did I mention RDEB is a one-in-a-million condition and we had gotten the referral to Stanford from the ONLY pediatric dermatologist that knew anything about EB? It took 5 months worth of calls and pleas, but finally we were able to take Nicky to Stanford. At this point Nicky was 9 months old and the answers we got came a bit too late. Some of this information would have been CRUCIAL for us to have when he was born. For example, who knew about the hands contracting? I had read someting about 'webbing' but the contracting was news to me. Lo and behold, Nicky's index finger was already a hook and could not be straightened. He was 9 months old!! Now, remember, this was 1997, there was hardly anything about EB on the internet and the only other person I knew that had a child with EB was someone who had a child that was younger than Nicky so it was like the deaf leading the blind. There were no support groups anywhere to be found and nobody I could ask any questions to that would have an answer for me. To say I was living in a nightmare it's the understatement of the year. I remember vividly one day putting Nicky's foot under the sink with running water to get the bandages unstuck and amist his screaming a friend leaving a message on my answering machine asking me how I was doing with the new baby and if I was enjoying being a new mom. Oh yeah. Don't get me wrong, I ADORE Nicky, Nicky is THE sweetest child in the Universe and I will say that until the day I die, but it was hard taking care of him without any help from anyone at all and this remains the hardest things I ever did in my life. Three more incidents come to mind, one involved a blister on his tongue that was so gigantic it prevented him from breathing. How would you like to take your baby and put him on top of you while he's screaming and direct a needle in the back of his mouth to POP this monster so your child can breathe? How about another time where out of the blue he started vomiting blood? The worse experience, one that I still can't shake after all these years is when I accidentally stepped on his hand, proceeding in COMPLETELY ripping off the skin of his entire hand. Within minutes my bathroom was filled with several fireman would were just SHOCKED at that view and had to think about it and discuss among themselves before they figured out what to do. I am still in tears when I think of that day.

Before you even wonder-yes, I asked the insurance if they would send a nurse at least once a month to help me out because I was drowning and it was DENIED. I ended up in a psychiatrist office, all I did was cry for an hour and all she did is hand me a prescription for pills. Lovely. I took the pills for a month and I decided they were not for me. Nick had me try other things and I just came to the realization that none of that stuff was for me, that to get better I simply had to get emotionally better on my own. Easier said than done. That's why I ended un in Italy for nearly a year, getting help from my parents, and my dad, 'til this day, tells me how he'd never seen me so low.

BUT, that's another story, for another blog. Over the years I continuously tried to get the Insurance to pay for bandages, and I got constantly refused. Even when I moved to California and I was able to get CCS to cover bandages, they still needed a letter from the Insurance once a year stating the denial, and it would take them sometimes up to 3 months to get me that letter, which meant I went without bandages for those 3 months. Then there was the time the Pediatrician was adimant of Nicky having PT & OT once a week each. People don't understand this, but every single appointment has a $30 co-pay. This means $60 a week or $240 a month and I wish I could have afforded it, but I didn't. I ended up in the bankruptcy office. Yes, I had a bankruptcy over MEDICAL bills. Sounds familiar? Why do you think I am so mad? I have an entire family in Italy, some of which have had some SERIOUS health issues, such as my mom, who was in the hospital, near death for 3 months, not only they saved her life, but the source of her problems, her kidney, was saved without the need of  going on dyalisis, and her co-pay? $0. Here there is a $150 co-pay for EVERY DAY you're in the hospital. In Italy the National Health Care system takes care of you. The same Health System that paid for my sister's IVF, who pays part of the women's salaries so they can stay home with their babies the first year of life, the same Health Care System who has taken care of every family member of mine without bringing them into bankruptcy. I feel really nauseated when people, who NEVER lived in a country with a National Health Care system, have a strong negative opinion about it. It's like they have an opinion about a book they NEVER read! Their opinion means NOTHING to me. But, alas, of course I am not even mentioning all the times Nicky needed a throat dilatation or a hand surgery and the referral took months and months to get, one time it took 2 years! It was a long story of lots of people not giving a hoot, but, again, another story for another blog. Or a book, yeah. At some point the whole story will be told.

So, what happened to Greg today? It all started months ago. A year ago actually, when Greg had his first stroke. After he was sent home from Rehab he was referred to a PT in the area. We were supposed to go once a week. We went to the first appointment and we saw the guy for 10 minutes, he handed us a flyer of excercises to do and sent us on our way. Driving home we were wondering why we weren't asked for the co-pay and figured since it hadn't been a 'session', maybe that was the reason why. We went again the following week and... same thing happened. 10 minutes, flyer, no co-pay. On our third appointment, while we were waiting in the lobby the lady asked us for... are you ready? $90 for the 3 "sessions". What sessions? 10 minutes... you call that a session? What kind of SCAM is this? We took our 'flyers' home and we started doing everything from home. After the second stroke there was no Rehab, even though he was worse off than after the first one. For some reason they thought he was getting PT or maybe the insurance didn't approve it, I really don't know, I was just happy to have him home so I didn't ask too many questions. It wasn't until an appointment with the FAB Neaurologist in Loma Linda that we realized we truly got the short end of the stick. She was mad at everything and everyone. 10 minutes? What? She wanted Greg in Rehab in Loma Linda, a new brace, all kinds of stuff. After 4 months we FINALLY got some in-home rehab (it had been DENIED twice, until the Dr at Loma Linda called them directly), but the in-home place was only approved for 4 visits with the OT and 4 with the PT, the co-pay was something we could handle, $15 so we would have been happy if this was something ongoing, but it was not. Did I mention that after it was approved, we were still told it was DENIED and the appointments were cancelled? Twice? A nightmare. That's what it is, period. A nightmare.

Moving on at a snail pace, in August the PT/OT appointments ended, Greg got his new leg brace and we were waiting for the approval for the outpatient PT. When the approval finally came in, and it was once again for that SCAM place, we were understandably upset. We told them that's the last place we wanted to go! I called for an appeal, twice, nobody called me back (shoooocker!!), finally I got a hold of the Insurance who gave me a list of places where I could just call and make an appointment for. Which, I did. Their first opening was this morning. When we went in we were told they don't take Aetna HMO and they would need the referral from the Doctor. Ugh! It was Aetna who gave their phone # to call for goodness sakes! I came home and there was a letter from Aetna stating they are working on the appeal and I just got off the phone with someone else at Aetna who told me they are 'working on it'. In the meantime, we wait.

What angers me is that I have a school friend in Italy whose boss had a stroke last year. SAME kind of stroke Greg had. Nearly identical. Without much problem, she's been getting FREE PT (Thanks to the National Health Care system) every week and now she's almost back to normal. After a year she has to pay out of her own pocket, but it's only $40-50 (not sure about the xchange rate at this moment) per session (here it's at least twice that, I checked!) and she only goes once a month now since she's nearly recovered. I am crying in ANGER thinking how much better Greg would be right now if the stupid "Health Insurance" system in this country worked without PROFIT. What is wrong with America? For shame!!!!!! Why can't we take care of our own? Mad, Angry, Disappointed, nothing can really describe me right now. Makes me want to take him to Italy right now if I could

And... that's the way things are in my world. As I said before, until you experience things on your own skin... never 'assume' things are so peachy. Ever. Never judge a book you never read.

Peace,
Silvia

NEED good news please... anyone?

I am having one of those days. One of those days where I *NEED* good news. I need cheering up. Anyone? Something? Anything?

There are several things in regards to Greg's mobility that scare me. If we can't get Greg mobile and independent SOON, Nicky might suffer severe consequences. Why you might ask? Here we go. Ready?

1. Greg might lose his job=lose his insurance. Isn't that beautiful? Without insurance, there is no transplant for Nicky. Even if Nick starts covering Nicky with his own insurance (which I know he will, not even a small question), the new insurance might not cover the transplant or other things, such as the surgeries and bandages Nicky needs. I need not remind that Greg needs insurance himself. Have I mentioned the nightmares the Insurance companies have put me through the past 13 years since Nicky was born? No? Just wait until I finish my book. Your jaw will drop. With Greg losing his job we'll lose not only the isurance, but the house and everything else that goes with it. Forget, once again, me trying to go to College, I will need to get a full time job somewhere while being a 24/7 caregiver for both Nicky and Greg. Fantastic! Nervous breakdown? Here I come.

2. Even if Greg does not lose his job, if he needs me here to care for him, this means I cannot take Nicky to have his transplant. I am uncertain if Nick can just take him-afterall, I am Nicky's primary caregiver, and it's unlikely that Nick can take 5 months off work. Without the transplant, it's not a question IF Nicky will pass away form EB, but WHEN.

To be honest, I am sick and tired of CRAP happening to my life I have NO CONTROL over. Alex's death? I certainly didn't cause that. Nicky's EB? I didn't cause that either. Greg's strokes? Not only I didn't cause it, I really do not blame Greg for that either. Greg was a runner, he was a healthy man all his life, always eating well. Maybe not as well as he should have, his BP and cholesterol was slightly high, but he wasn't overweight by any stretch of the imagination and he was active. I see all these obese people getting drunk or high on a regular basis, eating hamburgers and french fries all the time, much older than us, yet, nothing happens to them, and they all have healthy kids and I want to know WHERE IS THE JUSTICE IN THAT? Why am I the ONLY person in the family with a dead child? Why am I the ONLY person in the family with a disabled child? Why am I the ONLY person in the family with a disabled husband? Why does every CRAPPY thing have to happen to ME?

God better have a good reason and a good answer for me when I reach the perly gates, that's all I have to say.

THank you for letting me vent! I feel better now. Waiting patiently for my mood to improve. Maybe talking to my mom and dad will help-I will go call now.

{{HUGS}}

The worse thing you could do...

Wanna know what is the worse thing you can do to me? Make me like I am right now, stuck, unable to travel or go anywhere. My dad has a big birthday this winter and I can't go see him. I can't go by myself because my family needs me, and I can't afford to take all three with me, let alone being able to push two wheelchairs with two hands. It ain't happening. Greg has retired his chair, but he can't really walk long distances, any air travel with my family is completely out of the question, not only to Italy but, well, to anywhere. No vacations for us, no one day trip to the beach, to an amusement park or to a national park. Connor keeps bugging me about taking him to Legoland. Yeah. I wish. Connor is stuck at the house like everyone else. I am not asking much, am I? ONE DAY. Nop. Nothing. Is this temporary? It's unknown. Greg could become independent within 6 months... or 6 years. If we'll go through with the transplant for Nicky once Greg is a bit more independent (whenever that will be), it will mean we'll be grounded for a full year after that due to the weakness and precariousness of Nicky's immune system at that point. And then, there will be the unknown of how he'll be doing after that.

Is this a big deal? It is to me. We have no family nearby. All my friends are everywhere BUT here. This means we're stuck and alone. Is it any wonder we are truly considering moving to Italy when Greg retires? Is this a shock? To be able to spend Christmas or Easter surrounded by family? How many years have YOU been away from your family? For us, is just too long. Decades... Amazingly enough, I was ridiculed for this too. Whatever. I thought my life was MINE to live. Am I wrong? Greg is the one that suggested it and wants to go! LOL. Give me a break.

So, why did I move from Italy to begin with? I get that question often times. One of my cousins was asking me that a few years ago... "were you running from something?" Nothing could be further from the truth. But, to know the truth, one has to know me REAL well. The truth is that I am, by nature an *adventurer*. By the time I was 18 I had compiled a scrapbook full of travel photos. My favorite collections were stamps and postcards from all over the world. This is one of the reasons why I didn't want children in my twenties, I wanted to LIVE. Of course, hindsight is 20/20, I probably would have gone about the whole thing quite a bit different knowing what I know NOW, but at the time I could only go by what I knew back THEN. I found every opportunity that presented itself and I grabbed it. I was not running FROM something, I was running TO. By the time I was 20 I had gone from California to Florida and back. Amusement Parks, National Parks, loved it all.

I am older now... just turned 46. I still want to travel, still want to see places. I can honestly say, there is nothing in the US I am really dying to see... maybe New York. My 'bucket list' includes Egypt, Paris, London, and Italy, yes, glorious Italy, I want to see it all. I want to take photos everywhere. I've always been keen on photography, by the time I was 10 years old I had compiled photo albums in chronological order for every member of my family. Yes, I was 10! I now have magnificent scrapbooks that are filled and I want to fill-and nobody to show them to. But, not now. I have to contend with the now. The now of taking care of my family, who will always come first. I know sometimes I've been criticized of making things about "me". The truth is, when Nicky was born with EB, it's almost as if a bomb exploded in my life that turned everything upside down. EB enters every aspect of my life. I always have to make sure the bandages are changed, the Doctor's appointments made, the transfusions taken care of, supplies ordered, and Nicky is HAPPY!!!! Everything falls on my shoulders, but somehow I am not supposed to complain, ever! I try to be positive and on most days I am, but on days like today, confronted with the reality that I can't possibly go to my dad's big birthday dash, yeah, it's depressing. I don't know WHEN I'll be able to go to Italy and see my family, at this point it's *definitely*no sooner than 2012, it will all depend on so many things which are all up in the air right now.

Give me this day of feeling sorry for myself. It does not last long. I will be better tomorrow... promise...

Mini-Greg & Nicky Update 7/8/2010

I promised an update on my boys and I will do one now since it's been a while since I've done one, although I don't have too much new info to share.

Let's see... let's start with Greg. Unfortunately I can't really say I see a lot of improvement. He tells me that he keeps up with excercising at work, especially his arm, and he's finally able to open and close his hand quite a bit more that he used to, but far and wide, since, say, May, I can't say what else I can see that has improved even slightly. It's depressing him and it's depressing me. Before his second stroke this past February he had made some major strides that are yet to come back, such as his ability to walk without his brace. He still needs his brace, day in and day out and won't go without it. He uses his cane often to lean on and one good thing is that he does not want to go back to the wheelchair no matter what. He does drive to work now daily, at first he had a ride almost daily, but he's gone solo now for about a month or so. That has made a big difference in his confidence. His numbers are fantastic, blood pressure, cholesterol, everything is in the normal range.

Nicky had a rough week or two after his throat dilatation in late June, but I can see we're turning the corner a bit. Before his dilatation he used to throw up daily due to his inability to swallow and his allergies... he's allergic to "something", we can't really test him for due to his skin, but we know it's environmental. Anytime we travel anywhere, wether it's Northern California, Arizona or even Italy, his nose is clear, but here it's a different story. We finally figured out a cocktail of medicine to give him at night (a nice one! All we need to throw in is alcohol, LOL) and his itching/nose is under control. His itching, by the way, is his WORSE enemy. Especially at night when he does not realize he's doing it, that's why the meds are so important at night. 90% of his wounds are caused by his itching, so to us is *vital* to overwrap to create that very important padding to prevent him from hurting himself. It works for us. It's funny-there are some doctors that are NOT happy with the overwrapping, they tell me his skin needs to 'breathe', but, okay, the skin is now breathing BUT it's full of wounds? NO THANKS! Nicky has LARGE chunks of his legs/arms, which are his roughest spots, wound-free for ages, thanks to the overwrapping. Interestingly enough one nurse at Stanford last month praised me for it. WOW, there's a first for everything. Oh no, wait... the EB expert guy in Italy once told me he wished all the parents wrapped like I did. Yes, 2 people believe in me. YES!! LOL ;-)

Moving Forward... for Greg, more of the same, we have more appointments for Loma Linda, but the super-duper Physical Therapy he NEEDS got denied by the insurance because they said it was NOT 'Medically Necessary'. RIGHT!!!! So now we'll have a talk with the local Physical Therapy because for them to give us a piece of paper and talk to us for 10 minutes of what we need to do is completely UNACCEPTABLE. He needs a full hour of someone working on him for goodness sakes!!!
For Nicky...   by the end of this month they will fit him for leg braces that are soft and fit over his bandages for him to sleep on to attempt to straighten his legs a bit or prevent further damage. His knees have had large wounds since he was 1 year old and have NEVER been wound-free, so he walks with a little bend at the knee joint.
We are still waiting to hear from Minnesota about Nicky being a candidate for the Bone Marrow Transplant. They have all the medical records that I could get my hands on so now everything is out of my hands. I am hopeful I should hear something before the end of next week. If Dr. Wagner decides Nicky can be a candidate we'll make arrangements for Nicky and I to fly out to Minneapolis for the evaluation, which will include tests, xrays and a full disclosure of what it will all entail. Provided all the tests come back OK I am hoping to be able to take Nicky to have the BMT sometime in the spring-early summer (we'll be gone about 4 months), provided Greg is more independent. I really worry about that! Somehow we'll muddle throught it.

I'll have another update, possibly at Caringbridge sometime in late July/early August for Nicky. The online school is planning an IEP to address any possible concerns, but I am already contemplating possibly quitting my job to fully concentrate on my school and be there for Nicky for his school when he needs me. So many things are up in the air right now, can't really plan too much ahead.

If you got to this point, thank you for reading and thank you for caring!!
{{HUGS}}

Silvia and Family :-)
P.S. BTW, Connor is doing great, he's my joy and perennial cuddler, he helps me and both Nicky and Greg all the time. He's 6 going on 32. Will start 2nd grade next month!

WordArt Freebie

Here's my WordArt Freebie for this week...

CLICK HERE to Download...

Here's how I used it!

That's my son Connor when he was 4 days old...
CLICK HERE to see a full preview of this page. I made it using a kit I got from SteelCity Scraps.

{{HUGS}}

WordArt Freebie

Wow, it's amazing. I actually have time to do this again! I've missed it enourmously. I will try to do one per week before school starts again in the fall...

Here's my WordArt Freebie for this week...

CLICK HERE to Download...

Here's how I used it!

That's my son Connor when he was 7 months old... ADORABLE or what? Of course I am a bit biased. He's just finishing up 1st grade and I still can't believe it!

CLICK HERE to see a full preview of this page. I made it using a kit I got from Wimpychompers Creations.

{{HUGS}}