A man of words and not of deeds is like a garden full of weeds

Greg hired a gardening service about a year ago to come once a week to mow the lawn etc. They just started coming again since the winter break and I was shocked to find out that I still have 3 little strawberries plants kicking. They are flowering right now, I might have some strawberries soon!!

Weeds are the enemy of beautiful gardens because they compete with your plants for water and nutrients. Likewise, the weeds in your life must go because they compete for your energy and block the positive thoughts and action toward your goals and your happiness. As you may imagine, at this point in my life, I need all the positive energy I can muster:

1. I need to keep Nicky as healthy as possible-which includes daily bandage changes, nightly "cocktail" of medicines, g-tube feedings, trips to the hospital for infusions, dentist, hydrotherapy, xrays, throat dilatations etc.

2. I need to make sure my husband gets all the help he can from the medical community and help him with daily excercises and daily things he cannot yet do by himself. I have to always have a positive word or thought for him. He deserves it.

3. I want to do good in College and hopefully get my degree before 2012... and still keep up with my work schedule and keep up with all the household chores which pretty much all fall on my shoulder, laundry, cleaning etc.

I am not complaining here BTW, I am just stating what I need my energy and positive thoughts for.

So... what are some of these weeds?

1. Some weeds are yours forever. They are better known as family. Some family members are exactly what you need, you are there for them and they are there for you, they are joy to have in your life. Unfortunately others are poison, only bringing negativity to your life. They are ungrateful, uncaring and selfish.

You know the ones I mean. They are the ones who either cannot be happy no matter what or/and always bring negativity, doubt, depression and sorrow in every moment of every day.

2. Some weeds you choose. They are better known as friends or spouses. We are drawn to share our dreams and goals with them, but we have to be careful. While some friends are wonderful and truly have your best interest at heart, some may become jealous or resentful. Do not let them project their fears on to you, your progress toward your goals and happiness will be slowed if not stopped.

How do we remove these weeds from our life?

Minimizing contact is the first step to reduce exposure to the toxic efforts of people out to diminish your worth and devalue your goals. Depending on the amount of negativity and life-sucking capability of these individuals, one must severe ties as soon as you become aware of the damage they are causing.

Preventing future weeds from entering your life garden is the next step. While minimizing contact with toxic family members may be the only step, while making new friends, now that you can recognize the signs, you can act quickly to keep them from getting too close.

Always be on guard against inviting your own internal weeds in the form of negative thinking and self-destructive habits. Keep practicing more positive thoughts, follow your passion and pursue your goals, but always be prepared for possible weeds lurking.

I surprised myself...

I am taking a History of Photography class for my degree and part of the final grade is doing a presentation regarding a photographer that inspired us. Those of you that know me well know how much I love panoramas and scenic views.. when I take pictures other than my kids, it's of nature, landscape, that sort of thing. I have taken, over the years, some many truly amazing shots (if I do say so myself!), I think I may take my professor's suggestion and make a book for myself blurb.com of all these photos, and I think I might just do it.

At any rate, at first I was leaning toward Ansel Adams (of course!), but the work of Man Ray, Lewis Hine and Dorothea Lange was so great that it prompted me in doing a search of just "famous" photographs to get inspired. I wanted the photo to draw me in, not the famous name. I finally came across two photos that I can't stop staring at. One is from a photographer from Transylvania called Brassai. He was famous for portraying the night life of Paris in the 1930s. The photo that just mesmorizes me is called Bijou-Madame Bijou is a photograph of an old woman who once led a rich life but now lives on charity. She read palms and told stories to receive food and money from gullible men.

I don't know if it's the jewels or the somewhat familiar face, but I can't get this photo out of my head!

The second photo is a beauty. A truly amazing photo of the late Marilyn Monroe. I've always had an affinity for this tragic actress This particular photo of Marilyn Monroe interested me because it seemed a bit unusual in the way she is lying on a bed on top of a blanket portraying a Geisha. I can almost “see” the colors in this black and white photograph shine through because of the rich detail, which gives this photo an aura of mystery and intrigue. The rose in Marilyn’s hand and her sweet hint of a smile gives us a sense of her tormented life she tried so hard to cover up.

Sir Cecil Walter Hardy Beaton took this photo, he  was an English fashion and portrait photographer and an Academy Award-winning stage and costume designer for films and the theatre.


Cecil Beaton’s work caught my eye for the romanticism, elegance, fantasy, charm and the absolute beauty of each and every photograph he took of famous people such as Twiggy, Mick Jagger, Katharine Hepburn, Greta Garbo, Winston Churchill and Pablo Picasso. Reading his biography it’s easy to see why his work took this angle; he was enthralled by High Society, Glamour & the Theater world. Beaton is best known for his fashion photographs and society portraits, and often photographed the Queen of England.

So, in the next few weeks I decided I will be making my presentation about Cecil Beaton's work. That is surprising to me just because a fashion photographer was never something I thought I was interested in, I guess I am a bit more open minded about my likes and dislikes than I thought!

Aren't these photos beautiful?

And that's the way it is... part deux

I've been "online" for almost 18 years now and on some days I am still wondering if this social experiment has been worth all the ooplah. While on one hand it has been rewarding to be able to actually have contact with all my wonderful family and friends all over the world (literally) and especially in Italy, unfortunately I've been exposed to and being target to things far less than pleasant.

After my son Alex died, for instance, I was one of the very first people to have a webpage in memory of a baby lost. The Wall Street Journal took notice (yes, the Wall Street Journal CALLED ME! Imagine that!) and did a two page spread in their paper about little old me and my little website. I couldn't believe it. I got wonderful letters from all over the world from other grieving mothers because of that. I made lasting relationships with a lot of wonderful people. But the reason why I had to remove all but one of his photos from the website is because the exposure wasn't all good. Years later, suddenly I was getting letters that a grieving mother should never in a million years read. Letters so gross, vulgar, that made me change my link over and over again so they could not find me. Apparently a group of sick individuals thought it was fun to target grieving moms. One particular individual stood out because he kept using one photo of Alex, pairing it up with Aliens, Skeletons and horror movies paraphenelia. Months later I get a call from Scotland Yard... yes, THE Scotland Yard. They had a suspect in custody for murdering a Nurse and when they seized his computer they found all these vile emails about Alex he wrote me and asked me if I would cooperate to make sure he went behind bars forever. You betcha! I provided a statement, copies of the photos, emails etcetera and months later he was sentenced to life in prison with no parole. All this proving how good AND bad exposure can be.

As many of you know, I am the President of a non-profit organization (EBAN) that helps EB families. While lately life has been a bit too hectic for my partner and I to do more fundraising (hence actively helping more people), I've always felt as if helping others was the right thing to do. That's why I put thousands of hours in the ebinfoworld.com website, which I established long ago, which has all kinds of information, links and more for new parents or anyone wanting to learn more about EB. Once again, the exposure was good in many ways, but also not so good in others. The good was mostly being able to have ongoing conversations with other EB parents who taught me a LOT about caring for Nicky, and the highlight was having my sweet friend Susan, who appeared on the Rosie O'Donnell show, post my link on her show! I was thrilled beyond words. I will not mention the 'bad' part in this instance. But, let's just say, I now feel quite a bit for Celebrities on the cover of magazines with nasty headlines which aren't even true. I've lost count of the nasty crap (yeah...some things were true-I never claimed to be perfect, but the lies or the exaggerations have been staggering) I've been subject to and because of it I've developed quite a thick skin. I no longer lose sleep over it. I laugh it off. Shake my head. Whatever.

It would be one thing if people that truly know me would have something bad or untrue to say about me, but that's never the case. Ever. The nastiness only comes from those that know very little about me. I do not claim to be perfect, and I never will, but if you are going to write me an email full of insults know that it does not bother me in the least.  It can't. Your insults come from either your ignorance or your character, in other words, they reflect YOU as a human being. I may reply back that you're pathetic, but that's about the worse you'll get from me, at least in recent years.

Remember this: "How you treat me is your karma, how I react is mine". -- Unknown

And that's the way it is...

You win some, and you lose some. In life, you can't make everyone love you or even care for you, no matter how hard you try. At some point, we must realize when the war is lost and stop fighting battles are never going to be won.

September 10, 2001 was a hard day for me. My mom was recovered at a hospital in Italy and she was not doing good. In the next few days we almost lost her. She started bleeding heavily in the middle of the night and she became unconscious. By the grace of God, a Nurse checked on her and found her in a pool of blood. The amazing Italian Doctors worked feavereshly to save her, they even got drugs from the US to get her better, she would stay in the hospital 2 months before going home. I was emotional to say the least about the whole thing. Of course I couldn't talk to her, she was unconcious and then couldn't speak at all for sometime and my dad and my sisters would fill me in all the details. I was so grateful. At the time, just after 9/11, TV stations had non-stop coverage of the tragedy in New York. People were crying and I was a basket case. I had just lost my job, but somehow, someway, I scraped together enough money to go to Italy to see her and let her know I loved her. That's what a daughter does. I was thankful she was alive, that's all it mattered. There was no selfish motive whatsoever.

Love, gratefulness. Some things in life should be easy, common sense. The rules are easy enough: if you appreciate someone, tell them. If someone does something for you, be grateful. If your life would be worse without them, let them know. If the life of a loved one is enhanced by someone else, be appreciative of that. Why is it so hard to say "thank you" nowadays? I am not talking about close family members, my husband, my kids, my sisters, my parents... in trying times they have been fantastic. When my son is so appreciative of a new toy that keeps kissing me and thanking me for a week-wow, it just makes me love him more, if that's even possible. When my husband tries so hard to do things he can hardly do just to lighten the load for me-that's love. When my sisters comments on a blog I wrote, telling me that she misses me so much her heart aches, that's all I need to know to understand her love for me. And, of course, my parents, my dear parents, who, at every phone call they tell me how amazed they are for all I do without any help, and how my dad stays up at night thinking about me and worrying about Nicky, I have to count my blessings. Is it any wonder Greg and I have decided to move to Italy when he retires? That's where my heart is, and he knows it. He told me, on our trip to Italy, how much love he felt eminating from my family. He wants that. Since losing his mom, he felt as he's somehow lost it. He has a lot of people that care for him, but since his stroke, he's found exactly to what degree each one cares. Let's just say that some have been vastly more caring than others.

In the past few years I've sent wedding gifts and baby gifts-I did not expect a thank you note and I didn't get one. The amount of Xmas cards I receive has dwindled to, maybe, 10. I send emails with information or photos that someone requested that never get answered. I spend hours writing blogs so family members would know what's going on, but some are too busy thinking they "know" what's going on and be mad about stuff that didn't happen, and if they only had *bothered* to read, they would know better.

That's just the way it is. I choose to be grateful to the people in my life who are there for me. They Rock! The others, if you care enough, the ball is now in YOUR court.

Feelin' BLAH...

I am in a foul mood today, so please bear with me. I am so upset right now about a whole batch of things it's hard for me to look evenly at what's going on and make sense of it all.

I want to know why the powers that be-God or whoever is up there-does not like me or my family one tiny little bit. Everything has to be a struggle. EVERYTHING!!! WTF??

Last week I found out that Nicky's pediatrician apparently does not give a crap. Finally there is a CURE for my son's horrid condition, and she does not want to be made 'responsible' for the Bone Marrow Transplant. The Referral will have to come from somewhere else. While I am fairly certain that Nicky's hematologist will come through for us, it will not be over as simply as that. Here in California there are some nuisance called "Medical Groups". Any referral that deals with "out-of-network" procedure has to be 'peer reviewed' and might need a 2nd referral. This all BEFORE it even reaches the Insurance for THEIR approval! Of course I have to constantly call, email, leave messages for anyone to GET THEM to do anything. I am STILL waiting for hydrotherapy to come through for us, I've been waiting since January and I can't even get anyone to call me back. Lovely. AAARRGHHHH!!!

Then there's the mess my husband is in. We had paperwork for disability and workman's comp to fill out and we went in last week to get that taken care of. Now we find out that one is done, but the other one? They won't do it and they are giving me all this munbo jumbo how the insurance won't approve the doctor filling out paperwork? WHAT? All they had to do is fax some paperwork over and now the girl that promised me this is apparently on vacation until next week. Does anyone, anywhere, actually give a crap? Seriously?

It does not end there. All we need is a little part for Greg's brace which is wearing out and we are given the 'don't call us, we'll call you' routine, and, yes, they NEVER call. Why should I be surprised?

This give me just more material for my book. I have 13 years of stories of the inadequacies of the US Health Care System, the non-caring staffs, Nicky's various pediatricians' opinions on me overwrapping this kid that when I lightly wrap gets completely covered in wounds from scratching, or other doctors (and other parents) being mad at me for getting Nicky a power-chair (I am sick and tired of them telling me it's like "signing their death-sentence"-what am I supposed to do, PUSH him every flipping where?), the ridiculous system (and waste of time & money) that makes you go to a referred Doctor that knows NOTHING about EB just to get a referral to one that does, the system that gave my husband a prescription to a medication that CAUSED a second stroke-and nobody wants to take responsibility for it, the Insurance who-when Nicky was a baby and I was nearing a nervous breakdown, would refuse to send a nurse to help me out, I have so many stories, after stories after stories, and this just adds to the pile. My husband just told me today how I've been fighting for 13 years, why would a cure NOT be a fight? I just wish someone up there would give me a flipping break, is all.

Okay, thank you for letting me vent. Back to my corner. I've got a Birthday Party to organize.
{{HUGS}}

Silvia

Happy Easter! Greg/Family Update 4/3/10

Happy Easter everyone!

I will start by giving a quick update on Greg's latest Doctor's appointments. He had a CAT scan last week and as per his Neurologist all the blood from the hemorrage is now completely re-absorbed. It's good news all around. He will start taking baby aspirin next week and that will be that as far as 'blood thinners'. When we saw his General Doctor he stated he wanted him on Vitamin D and he's also upping his Blood Pressure Meds a bit, we're trying to keep his blood pressure in check and it has been a tiny bit high, so that should fix it. His cholesterol numbers are still good and his tryglecerides are now in the normal range! Hurray!

In a few weeks we're finally having this appointment with the 'stroke experts' in Loma Linda which has been in the works since January. I used to work in Loma Linda 22 years ago (am I THAT old? Seriously!!) so this will be the first time I'll be in that neck of the woods since then. Should be interesting.

Greg is making very slow improvements. He still can't really walk without his brace and his arm is still a little numb. He tells me his face is a bit numb still as well. He excercises every other day (or every third) day very mildly and we'll keep it that way for a while. No need to stress anything with his blood pressure issues etc. His memory is improving. When he got home from the hospital he was scaring me a bit-there were two incidents where I clearly handed him something, he looked it over and he commented on it, and then the next day he was asking me about it as if he completely forgot about what happened the day before. He hasn't done anything like that since, so it's a good sigh. Phew!
He'll "probably" go back to work in late April, it's still all up in the air right now-we'll see.

Connor is always the same sweet little boy as ever. He loves playing mamma's Facebook games (his latest is Zoo Paradise, he wakes up in the morning and immediately wants to play, LOL), is doing good in school and his latest favorite toy he even sleeps with is his Zhu-Zhu pets. The Easter Bunny is putting a couple of more in his Easter Basket... shhhhh!!!

For those not following my Caringbridge Journal for Nicky, I started that Blog officially the other day as we get started on our Journey to possibly get a Bone Marrow Transplant for Nicky at the University of Minnesota, to go there and read all about my current situation with the referral (the red tape is absolutely ridiculous!) the link is:
http://www.caringbridge.org/visit/nickyz
click above the journal to get notifications as I update. Right now the updates won't be very often, but as we get closer they will for sure get heavier. We're planning to start the BMT sometime in 2011, depending on Greg's recovery.

Our Easter will be as usual-just us four. Easter Bunny visiting, a ham, some mashed potatoes, and tons of CHOCOLATE! Connor can't wait, LOL.

Happy Easter!

Love,

Silvia and Family

CaringBridge Link

I started a CaringBridge website for Nicky-I will start blogging about every struggle we'll go through on his journey to this transplant, and we start with just getting a REFERRAL!

Nicky's Hope Journey