Accepting Yourself

011912-project-runway-all-stars-gordana-gehlhausen-designjpg-984c32b361604504There is a TV show that I am obsessed about… Project Runway. I sit there with my glass of wine and watch in awe.
I like it not because I am in any way, shape or form a “Fashionista” (although I do like nice clothes), but because the designers amaze me of what they can do with a piece of fabric. You see… I can’t do that. I tried… and I just… can’t. This bugged me for a long time because I come from a family of seamstresses. My mom used to make our clothes when we were little, my aunt in Italy was a seamstress by trade and used to give us plushes and fancy pillows she made herself and my other aunt even made Barbie clothes for Mattel.

Driven to just wanting to learn, I even took a sewing class in High School and I got an F. Seriously. I just can’t do it. How can I write HTML code with my eyes closed yet hemming a border is so darn hard? Well, at least I can fix buttons, and that’s where it ends. Once I got that fatidic F in sewing I had to realize one thing. I just had to accept the fact that sewing just wasn’t my thing. I may like and enjoy cross-stitching and crochet, but it was now OK if, HORROR!!!, I had to “buy” clothes. LOL. I suppose I should be thankful that clothes are cheap nowadays and I wasn’t born at a time where making your own clothes was the only way to have clothes. Oh well.

In many ways, accepting your limitations goes deeper than that because in life, there are a lot of things that we have to accept about ourselves. We are unique human beings and we all have things we are naturally better at doing than others. Otherwise, how do you explain children being able to do amazing things, such as cooking or playing the piano? Yes, nobody is good at doing anything without an insane amount of dedication and trial and error, but there has to be a passion and natural savoir-faire to go with it.

Being completely unable to make clothes didn’t mean I wasn’t artistic or couldn’t do anything else, it just meant that I couldn’t make clothes. Period. There many other things I was good at. I could draw. I was good with languages. I loved to write. I could play the organ.  I loved to bake. So what if I couldn’t make clothes? There was a long list of things I could do well.

There are many other things I had to accept over the years, one is that my stomach, after 3 full term pregnancies and 2 c-sections, is just an eyesore disaster. It’s OK because I was never comfortable in a bikini anyway and I had no problem wearing “Spanx”. I choose to focus on my good attributes instead. Genetics, truly, have been kind to me. I got my mom’s nice nose, my dad’s beautiful blue eyes… a nice rack 😉 Things that I could fix, I fixed. I didn’t like the brown hair, so, voila’, blonde thanks to L’Oreal. Braces fixed my teeth. So what if my stomach is ugly? I have much to be thankful for.

There are, of course, some things that are easier to accept than others. Accepting events in your life, for example, it’s been my biggest roadblock. Accepting Alex’s death took forever. I used to cry and scream “Why, why, why” in the car on my way to work every day. Little by little I came to accept it. It was a slow process and it’s different for everyone. That does not mean I am not upset sometimes, it means I worked it in the fabric of my life. It’s part of who I am.

Of course, having a child with EB was yet another challenge in itself to accept. I find myself wondering if I ever really accepted it on some particularly rough days, but I know I have for the most part. I even find myself missing our nightly bandage changes when he stays at his dad because it’s become such a routine part of our day. I honestly feel lost. It’s so bizarre because it’s not like I particularly enjoy it, we just go through the motions. We do what must be done. Do I wish Nicky was cured or felt better and did not need pain meds every few hours? Of course. Acceptance does not mean I don’t want him better, it just means I don’t beat myself up every day. Anti-depressants do wonders though.

And I can’t finish this blog without mentioning that not only we have to accept ourselves, events in your life and things that are basically out of our control, but we must also accept others the way they are. We can’t change people. We will live in such a better world for ourselves if we stop looking at the negatives on ourselves and others and focus on the positives instead.

I strive for that daily.

Love & Light,



Suspend Belief

After I lost Alex at full term 20 years ago, the one thing I could not do is watch anything “dramatic” on TV or the movies. “ER” was popular back then and I avoided it like the plague. 20 years later, Medical Dramas are still hard for me to watch. I was crying so much at the time that I realized that I needed to laugh, I needed to do things that would make me smile and forget, even for a moment, all that I was going through. So, TV shows like “Friends” & “Frasier” became my salvation.

A few weeks ago I had a great conversation with a new friend and once he found out that not only I had Nicky to care for, I also lost a baby at birth and our family also struggled through my husband’s health issues… he looked at me startled.
“How are you still smiling?” he asked me.
I admit I didn’t know how to answer.
“Because I don’t want to cry” is what I told him, but the truth is that I learned over the years to always look for a silver lining and put things into perspective. A lot about life revolves around not what happens to us, but how we deal with it. I decided I was going to deal with it by trying to keep positive. Not an easy thing. I failed a lot in this endeavour over the years, but I always strived to achieve it. Even on the days that I got angry and mad and screamed and shouted about how hurt I was, I always decided to forgive myself, learn from my mistakes, apologize if I could, and move on. I am not perfect. Nobody is. I was on a journey, and I still am.

The best way for me to be positive, is to suspend my belief. When you suspend your belief system, you allow yourself to escape, whether it’s into fantasy or daydream or even into problem solving, you have to suspend that moment unattached to anything within your life. I found that that’s when I smiled the biggest. I dream. I dream of the day when I will see Nicky running or cooking me dinner since that’s his dream. Fantasy? Perhaps. But it helps me smile.

You know that saying… “Life is a journey, not a destination”? It’s true. We’re all on a journey. We learn every day.

Love & Light,



Nicky’s Life Part 14


September 2003 – Nicky wasn’t quite 7 years old when his little brother Connor was born. Nicky would spend a lot of time just staring at him in awe! He was so happy when he was born that at the hospital he told me he was so happy he now had “a little brother to love”. These two are best pals till this day and I know they will be pals forever.

More of Nicky’s story in the book… Thank you so much for your support!!

Love & Light,



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The Present Is All There Is

“Losing a baby at birth, followed by a (7)

Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”.

He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would go to culinary school if he’s ever “cured” or if his life will be made simpler by him being able to walk and use his hands normally, which right now is impossible.
I reassured him we would “figure it out”, but as a mom, I’m dealing with a bag of emotions that are hard to describe.

Someone recently was talking to me about the future for Nicky in the aspect of medical care after he’s 21 and… I don’t even know how to respond, so I don’t. The future… yes. I can’t go there. Sorry. Aside the fact that I’ve already gotten my ducks in a row as far as that goes by asking the appropriate questions to the appropriate people, my heart wants to believe and hope Nicky will live to see his 21st birthday, his 30th birthday, his 40th birthday, but my head knows only too well how children and adults with RDEB die all the time. And if I didn’t know that, someone will post it on my wall. “Oh, look! Someone with a child with EB like your son has died!”

Gee, thanks.

No, they did not say that, they just want to “let me know”, as if it’s not something I want to know anyway. Why you may ask? Because, as if I am not already living in a funk, trying to distract myself from this monster I call EB all the time, when I hear of yet another death, watch me become this morose ugly person you don’t want to be around. Yes, Nicky at the time is beating the odds, but time is something he does not have. Time is a luxury. Nicky does not have a mild version of this dratted disease (disorder, condition, call it whatever you like), he is living in everyone’s worst nightmare. He can’t eat, he can’t walk, the moment he moves weird he gets a blister, he has nasty wounds that haven’t healed in more than a decade… I could go on. Time is not on his side. Most of the babies with RDEB that were born when he was have already passed. Adults with RDEB-HS are precious and few. I am not sure I know any at the moment that are over 21. What’s a mom to say to her son who wants to know what he’s going to do with his life?

So, yes, we focus on the present. One day at a time, many days one moment at a time. This is all I can do. The present is all there is. I found out over the years that I cannot function as a human being and as a mom knowing he could die at anytime. I focus on today. I make sure we laugh, we enjoy, we hug and kiss. I make sure he does what he likes to do, that he enjoys today. I make sure he has his pain meds. I make sure things are as easy for him as possible.

What else can I do?

Love & Light,




Losing Alex now an Audiobook!!

LosingAlex_audiobookMy heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn’t be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.

It’s available on Audible at this link.

It’s also available on Amazon at this link.

It is an Audible/Amazon exclusive, so it’s not available anywhere else.

Thank you SO MUCH for your support and I do hope my story helps another bereaved mom out there…

Remember, October is SIDS, Pregnancy and Infant Loss Awareness Month.

Love and Light,




Nicky’s Life Part 13


June 2003 – 6 year old Nicky went to Children’s Skin Disease Foundation/Camp Wonder for the first time and it completely changed his life. Even though Nicky is too old to be a camper now, they made him an honorary counselor, so he can still go. We are enormously thankful, more than we can ever say or even repay. It’s a time for Nicky to spend time with other EB kids and to be with people that truly care and understand EB fully. In this picture… while all the other kids rode the horses, Nicky was too afraid to do that, so he just rode on the little carriage behind it. He loved it!

More of Nicky’s story in the book… Thank you so much for your support!!

Love & Light,



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Refugees, Expats, Immigrants & Vagabonds

I know I speak a lot about EB and having a child with this horrible disorder, but there is more to me than that, of course. As most people know, I was born and raised in Italy, a country I deeply love, and as my life unfolded in a most interesting and mysterious way, I became an Immigrant. After living in New Mexico, Texas and Arizona, I moved to California nearly 15 years ago. It’s a beautiful place, but it’s not my real home. I miss Italy. My immigration story is long, one I explained in my book “Butterfly Child”. A story too long and intricate to explain here. At the core of that story is the fact that I am a traveler, a vagabond, an adventurer. On my bucket list is all places I want to see with my own eyes. Nothing else. I’ve always been this way and I will always be this way. I want to go to Ground Zero and visit the museum and the Statue of Liberty. I want to see Boston. I want to see the Niagara Falls. I want to see every corner of my beautiful Italy. I want to go to Paris. I want to go to Scotland. I want to go to Diana’s grave and place flowers there. I want to see the Pyramids. I want to take a cruise from Amsterdam to Norway. I want to take a walk around St. Petersburg. I want to see the Great Wall of China, I want to take a cruise to Hawaii… if I could be a vagabond, I would be one.

map-pin-300x225I find it interesting how uttering the word “immigrant” nowadays is almost like a cuss-word. I hear Donald Trump mumbling about a “wall” and I shiver. Good God. Is he trying to encase the whole country in medieval walls? It’s all just laughable. And hypocritical… isn’t the US founded by immigrants? Hello?

From its earliest days, America has been a nation of immigrants, starting with its original inhabitants, who crossed the land bridge connecting Asia and North America tens of thousands of years ago. As a matter of fact, if we keep going back in time, we can safely say that anyone that lives anywhere BUT Africa is the descendant of an immigrant.

Humans are quite nomadic. We move around in search for better jobs, adventure, deals, love or even for diversity. But being an expat is not really easy: new house, new language, new laws, new city, new people etc. Relocating is exciting and stressful. It takes a certain person to take this on, and they have to have a good reason and a good amount of chutzpah to do it, leaving your family and everything and everyone you know behind. Contrary to popular belief, immigrants usually are the ones that open up businesses, and have that go-getter mentality that many do not. I know, because I met sooo many! My research confirms my findings that migration is typically economically beneficial.

I totally understand why there has to be a need for immigration laws, so please don’t get me wrong. I totally get it. Especially in countries that already border on overpopulation. Taking in refugees means that you have to accept changes to a nation’s identity or culture, which, while this may not be big problem in the US, since there is such diversity here, it can be quite disconcerting for certain countries. While the changes are often economically and culturally enriching, it’s scary. No doubt about it. A country like Italy, for example, with gorgeous catholic churches all over, some built during the Roman Empire, is of course going to be upset if someone is going to build a Mosque in Rome to accommodate immigrants. I can see that.

As I saw the events happening in Syria though, I had to do a double take on my sentiments about immigrants. You see, when I was a child in Italy, there was this huge problem in Morocco and many fled to Italy for political asylum. I will never forget seeing the beaches or any resort locale being inundated with people from Morocco bugging us to buy their items. We were always weary because it looked like stolen stuff and we were upset that our vacation was ruined by people constantly approaching us, asking us to buy what they were selling. It could have been watches, jewelry, bags, sunglasses, anything, really. One day at the lake we sat at a table to eat ice-cream and I counted 9 times where someone approached us to buy stuff. It was insane.

The good news is that all those immigrants from Morocco have finally integrated (took long enough) and now have regular jobs, and while there are still immigrants selling stuff at the beach or the lake, they don’t approach you specifically anymore, at least not as much; they are happy to lay their items on a blanket on the beach and wait for people that are genuinely interested to come to them. Heck, I even bought a couple of cute bags from this guy that spoke perfect Italian and was so helpful.

The immigration issue though, it’s now getting completely out of control. Greece and Italy are completely overwhelmed with the amount of refugees coming in from many countries, not only Syria. In the news they only talk about those Syrian immigrants coming through Turkey and being stopped in Hungary & Croatia, but make no mistake, this is a big Southern European problem. Under the Dublin regulation framework, the first country a migrant sets foot in has an obligation to decide whether they’re a legitimate refugee and should be granted asylum. The law doesn’t tell countries what to do, it just tells them what they cannot do, which is they cannot send the refugee back to where his or her life will be in danger.

In the meantime, that government is supposed to feed them, house them, clothe them, provide medical care, drinking water and give them an opportunity to work. Considering the fact that unemployment in Italy is between 13-20% as it is, you see the problem. 10% of refugees were tested positive for Scabies and 25% have Hepatitis C. The Italian population, as one may surmise, it’s scared. Scared about everything. Morally they want to help, but there are consequences to be had. To make matters worse, countries like France and Austria are deporting any refugee they catch right back to Italy citing the Dublin Regulation. This is not a few thousand refugees we’re talking about, the numbers, according to Fabrice Legger, the head of the EU’s border agency, has put the figure at between 500,000 to a million. As Italy is not as economically stable, as, say, Germany, now it has to feed, house and provide medical care for a MILLION people! I don’t see how this is going to have a good ending. I just don’t. It scares me, and I am half a world away.

It is one thing when people move around the world independently (not specifically moving to the United States, but moving from one country to another), but it’s another one completely when MILLIONS flee from a specific country in one direction as it’s happening now. To be clear, there have always been refugees. People have often been forced out of their own countries because of war, but this issue with Syria is just too much. I understand why they are fleeing. Bashar al-Assad’s regime has targeted civilians ruthlessly, including with chemical weapons and bombs. ISIS and other groups have subjected Syrians to murder, torture, sexual slavery and more atrocities. Their civil war has killed 250,000 people, displacing half of the population (11+ millions) and caused 4 million to flee. What I don’t understand is why there is no talk on TV or anywhere about what to do to keep refugees from showing up in the first place. What is being done by anyone to help fix this problem?

The solution, in my humble view, is to address the underlying cause of this crisis. While all I hear all over that our moral duty is to save lives and take in refugees, I believe that our moral duty is to help them reclaim their country. I listened to a refugee being interviewed and he stated quite clearly how he didn’t want to leave, but he didn’t want to die. That if there was no war, that he would go back in a heartbeat. There are examples in history of revolutions to reclaim a country. It happened in the United States… twice, if you count both the Revolutionary War and the Civil War. It happened in France when things got dire to overthrow the Monarchy of Louis XVI. It happened during WW2 to overthrow Hitler. There need to be some guts involved. Sacrifice.

I am just a mom, I am not even sure I have all the details right of what’s going on. All I know is that there is power, strength in numbers. I can’t help but wonder if the 4 million Syrians that are fleeing were to collectively do their own version of the “Storming of the Bastille” if they could accomplish something. Don’t we always tell our youth: “Don’t Quit”, “Don’t Run”, “Fight, fight fight?”. The US has sacrificed greatly for their freedoms. Why should we sacrifice for someone else’s?

Just wondering out loud… I don’t like wars, but I also understand that sometimes there is no other choice.

Love and Light,