A Thanksgiving Birthday

12107063_860853270663524_8215076613673453991_nI am in a giddy mood today (hence the cartoon). Nicky turns 19 today. Wow.

Happy Birthday Darling!

Ever since he was born we celebrated his birthday on Thanksgiving day because it’s so much more fun when we bring out the cake and the gifts while everyone is actually here. Not that we have that much family visiting, but at least his dad will be here, and this year his step-sister and her wife will be here as well. The more the merrier. I wish I could have over my parents, my sisters, aunts, nieces, nephew, cousins and the whole bit, but that will have to wait until we sell everything and move to Italy in a decade or less. Here’s crossing fingers I can actually make that happen. It’s not going to be easy.

I even asked my mom last week if they sell Turkeys there and she said YES! I was so excited. They, of course, do not celebrate Thanksgiving in Italy, but since Greg, hence Connor, are direct descendants from the original pilgrims (I still think it’s crazy that I even found the connection) I have to keep it going. So I will continue our Thanksgiving tradition when we move there. I thought it was funny how my mom and dad stressed that the Turkeys there are smaller, due to the fact that they are not given growth hormones and all that jazz, which I think it’s even better anyway. It’s fine. All  you need to do is show up, leave the cooking to me, I told them. They stressed that they had turkey a few years ago that my cousin brought over from the US and they were not impressed. Well, after cooking turkey for almost 20 years every year, I am confident in my culinary skills. “You will like mine, promise, because you know I’m all about the baste”, lol.

Ok, enough about that. This post is supposed to be about Nicky. Nicky who can barely swallow mashed potatoes, forget the turkey. Yet I am still thankful.

I am thankful that he’s stable.

I am thankful he has internet friends.

I am thankful he smiles and laughs every day.

I am thankful he has such a peaceful and sweet disposition.

I am thankful he does not have any wounds right now that are worrisome.

I am thankful he thinks I am funny when I drink a little wine when I change his bandages. He would never tell me “no more wine, mom”, ha ha.

I am thankful he’s still with us, because tomorrow is not promised. Then again, tomorrow is not promised for any of us, and all I can do is enjoy the present and keep taking photos and videos. I know on a distant tomorrow I will cherish these memories.

Happy Thanksgiving everyone!

Love & Light,



…and the truth of the matter is…

I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛

I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after Nicky, he never had to learn to accept EB, he just “knew” at a young age that Nicky was fragile and he naturally touched him gently even as a toddler. As he grew older he even started being his little servant, not minding at all when Nicky would ask him to get water or get him whatever he needed and never resented him.

Connor is now 12, and for a while now he’s developed a love-hate relationship with his brother. So much so that if you ask Nicky if there is something or someone that makes him mad, the only answer, besides the EB itself is “Connor”. Nicky has such an amazingly sweet disposition that for him to say such a thing sometimes is shocking to me, then again, I see them hug it out like no two siblings I ever saw, hence this relationship between brothers can be summed up as “complicated”. Then again, show me two siblings that didn’t fight or hate each other as children and we would call that “unusual”, so there’s that as well.

Oh yes, it’s complicated.

I had a long talk in the car with Connor on our way to his school the other day and when I told him that I was excited because an Italian journalist was going to interview me for their magazine about Nicky, he was sad that he felt excluded once again. My heart sank. “Oh no”, I told him, I will make sure, as I always do, to include you as well. I then asked him what was the hardest part of having a brother with RDEB and his answer was that he could not “physically” play with him. He then expanded his answer with an eloquence that blew me away. He said: “When he’s in pain I feel sad”, “When he cries I’m annoyed”, “When he’s mad I get angry”, “When I see his wounds I feel cold inside”. He further told me he’s amazed he’s still alive. I don’t know if I felt proud at that moment, knowing that he KNOWS what’s in store for him if a cure is not found, or… sad that he knows his brother’s life could end at any time.

I sit here with a lump in my throat thinking about this conversation.



Nicky’s wounds over the years have exponentially gotten worse. His left arm (above) has seen the brunt of it. Not that his knees or feet are much better, but if I was going to point out an area that has been the most troublesome, that would be his left arm, bar none. This arm has given us a cancer scare more than once, has given us wounds like we’ve never seen anywhere else and while these photos were taken a couple of weeks ago, I can sadly say, this looks awesome compared to what it looks like now.

I am posting these photos today not to be an exhibitionist or to evoke pity, I want to be able to tell the truth. This is the reality for my son. He’s in so much pain I have to give him morphine just to get through the day. His life is so restrictive we have to completely rethink the meaning of life. He’s completely dependent on me. He has a g-tube for feeding, as he cannot eat anything that isn’t the consistency of yogurt. A single rice kernel will get stuck in his throat, despite the many dilatations he’s had. He can’t do anything but sit on the computer and play videogames or watch TV. That is all.

He has Recessive Dystrophic Epidermolysis Bullosa, and if anyone thinks this is a walk in the park, we are making a mountain out of a molehill or exaggerating when we say this is the worse condition you never heard of, or want to judge us when we say we “hate it”, then you need to come over and spend a day with us.

I get so angry when I hear people with much milder forms of EB than my son has, people that have no fears of dying from their condition (unlike my son, who could die at anytime) that can eat (unlike my son) walk (unlike my son), drive, get married, have children, have a job (all unlike my son, who can’t even put weight on his feet without considerable damage), call the person that came up with the quote “The worst disease you never heard of” “stupid” because, as they say, “us actually born with EB think it’s a shitty slogan”, or call names the person which, in name of awareness, was selling the shirts I HATE EB “negative and uncalled for”. As if any of us could actually love this condition which is brutalizing and killing our children. To those mild cases, all I can say is… have some compassion. Why, oh why, do the people that actually have EB can look at these photos above and think it’s an exaggeration or this is NOT the worst disease you never heard of? As I said in my book (Butterfly Child) sometimes I think it’s a lost cause to get people to understand how horrible EB can be, if even people WITH EB don’t get it.

And, guess what? Nicky was born WITH EB, and he wanted my “I hate EB” shirt when I got it, and he says that to me daily nonetheless, he thinks it’s horrible, and the worst as well.

…and that is the truth of the matter…. from our prospective, and, most importantly, from Nicky’s prospective.

Thank you for allowing me to vent.

Love and Light,



Nicky’s Life Part 20


June 2009

Nicky with one of the Ducks one of the moms makes for all the campers. Nicky has many ducks at this point, since he’s been going to Camp Wonder since 2003.

To read more about the story behind the Ducks, please go read Amy’s story HERE!

He graduated from camper to counselor 2 years ago and we love the CSDF ( Children’s Skin Disease Foundation/Camp Wonder) for all they do not only for Nicky but every child that attends this amazing camp.

Sending much love to Amy, the Duck maker! We love you!

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

Love & Light,



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Who We Are


My Nonna Rina (in the light colored suit) with her sisters Giovanna, Caterina & Angela in 1969.

My little sister was a big surprise in our family. One could say she is and always will be our greatest blessing, one that, however, my parents were not planning on. This meant that from the time she was born our vacations had to be… ahem. Cheaper. So, every year between 1973 and 1981 (and beyond, 1981 was my last summer with them) my family spent our summer vacations in the house built by my grandfather in the village in Italy where my dad was born and his family originated in. While enjoying the scenery and the tranquillity of the place among a few sight-seeing trips, we used to go visit his uncles and aunts, now quite old (some even approaching the century mark). My grandparents had about a dozen siblings combined, most of which lived a very long life, and at the time, while I was bored to tears visiting with old people with no teeth… or fake teeth, I reveled in the fact that my dad truly enjoyed spending time with people who knew his family intimately well and could remind him of all the things he cared about and grew up with. Because he had left the area when he was only six years old, he felt like this was the time to get to know his family and meet his many, many cousins. Seriously, my dad has cousins out to wazoo. My sisters and I used to go play outside, the farms were fun for kids, and even if most of the relatives we visited didn’t have farm animals, just to be able to climb trees or just breathe in the clean mountain air was something I will never forget.

The surprise in all of this is how important going to visit my great-aunts and uncles would become for me and my sisters, most especially my grandma’s sisters. The time we spent with them and the impressions they left on us would turn out to be monumental because it gave us a strong sense of who we are and where we come from. It made us feel part of something, perpetual and solid, roots to the past that spring and move forward to something bigger than the world we live in. I credit those visits if I have learned to appreciate and understand myself more and more as I grow older.

It’s been forty years, and yet I remember vividly the faces and accents of my grandma’s sisters, just as I remember the flower gardens my grandma meticulously kept. Every saturday on our weekly visit, she would bring me to the barn where she kept the baby rabbits and she let me feed the chickens and get the freshly laid eggs. This does not mean I don’t have fond memories of my mom’s parents or even my grandpa, but my Nonna Rina… I always felt a special connection. And, boy, could she cook!

This lesson on family unity and tradition instilled in me in my younger days is most likely the main source for my strong attachment to family in general. I am planning to take my boys to Italy next year (he’s hoping I can save as much money as possible because it won’t be cheap!) to visit my parents as they are getting up in age themselves. My dad will be 85 years old next month and my mom will be 79 in January. I especially want Nicky to spend time with my mom and dad not only because they have a special bond, but because I want time to cherish their lives as much as possible and enjoy every minute I have with them. I know only too well things can change on a dime and life is not promised. My husband has already lost his parents. Most of my friends that had children around the same time and with the same diagnosis as Nicky have already lost their children. Chances are in the next few years I will regret not taking this chance when I had the opportunity to.

Cherish your loved ones, as they are not here forever.

Love & Light,



Nicky’s Life Part 19


August 2008 – Nicky at the beach. It was not exactly a fun day for him. After a while we had to make sure he was under a big umbrella with a wet towel around his neck. At one point he inched closer and closer to the water, so that every now and again the tide would soak him through. He loved that, but the bandage change afterwards, complete with sand in his wounds, was not a particularly nice one. He never wanted to go again.

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

Love & Light,



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Are We Not In This Together?

butterflychild8Doing genealogy as a hobby has taught me the fact that not many generations ago, people didn’t move, and if they did move, it wasn’t very far away-maybe a day’s walking distance.
Generation after generation, my dad’s family lived in the same little village in Italy for centuries. CENTURIES! My mom’s mom family can be traced in the same general area in the Piedmont region as far back as I can trace it, roughly a couple of hundred years, and my mom’s dad’s family was from Turin. They had big families and they all lived next to each other, so if anyone needed help with anything, family was there to help you. Babysitting, food, manual labor help etc, it was all available for the asking. They were all in this “together”. I even found the dwellings of my mom’s paternal ancestors, it was basically a row of houses for many families altogether, and the entire dwelling was named after their last name.

And look at today. People move. Boy, do they move! I have family that lives pretty much everywhere. I have cousins in Australia, France, in Southern Italy, in Chicago, in the same little village my dad was born in, in Georgia (US), Arizona, Washington DC, other cousins live in the Aosta Valley and Tuscany and many near my parents in Italy. Of course, I am the vagabond in California. Which is not a good thing when you have a child with a severe disability. It hinders you. It makes you needy for the help from family that is unavailable. It makes you the pray of those that think public assistance is for the weak, the lazy. Unfortunately, once Nicky was born, I was unable to move to be near my family, so I went without help from those who would have dropped everything to help me. Depressing? Let me count the ways.

The world has changed. People move around a lot. Even my husband’s family is nowhere near. Being a country of immigrants, the US is par for the course, and I am certain there are plenty of people in my shoes in this country of people on the move, needing the help from family that is nowhere near, but I will be damn if anyone will make me feel like lesser of a human being for having been on food stamps at my lowest low, or for requesting Social Security Disability for Nicky (applied in May, we’re still waiting), just so I can pay my co-pays for the g-tube supplies, a whopping $300 a month. That’s besides all the other co-pays I am always shelling over, plus all the products not covered by insurance.

I am still uncertain why there is so much denigration over helping people in need. I don’t get it. Anyone that takes a tax deduction is actually getting money. Anyone that takes a subsidy is getting money. There are corporations that pay no taxes at all. Many hide their money in Switzerland or the Bahamas so they don’t have to pay taxes. Not paying taxes meaning they are getting money.  A LOT more money that anyone ever on welfare or food stamps! Money they then blow on huge mansions and boats or God knows what the 1% blows their billions on. I feel so sorry for them. Right. Why is getting food or welfare just so you don’t end up begging for food at the train station considered bad? Paying for a program like food stamps is peanuts compared to what tax evasions by huge corporations cost us. Why can’t we look at the real problem instead of the peanuts? Why is getting a tax deduction or subsidy “cool”, but food stamps horrible? Do you know what causes death? Not the absence of a tax deduction, but the absence of food. Do we really think this low of our fellow countrymen that “let them starve” has become our motto? Isn’t America better than that?

I suppose we’re “not” all in this together afterall. Not anymore. Unless it’s family, they can starve. It is very sad. For all our technological advancement, as a species I feel we’re becoming more and more distant, gray, greedy. We’re only in it for ourselves. I am immensely grateful to my son, which has shown me that there are many people out there who practice what they preach, who have helped tremendously. If it wasn’t for that, I don’t know where I’d be today. I know I’ve felt immensely alone for many years, and only recently, in the past few years, I realize there are indeed good people out there.

All I know is that the world is full of suffering people, everywhere, some even take it out on me. It’s ok. I know where the delete and ban button is, thankfully.

So, if you have nothing nice to say, don’t say anything at all.

Saying a silent prayer for anyone needing some love and light tonight…



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You Know You’re an EB Parent When…

  • When you can make a Doctor say “Huh?”
  • You have enough paperwork to wallpaper your house.
  • Yhttp---www.pixteller.com-pdata-t-l-157616ou own more scissors that is either reasonable or anticipated.
  • When you know more than the real doctors do about your child.
  • When you think it’s a good day if you don’t see any blood.
  • Your invitations to any get-togethers have disappeared.
  • You know EB families who lost everything because insurance wouldn’t pay for appropriate care and supplies.
  • When your two-year-old knows how to pop blisters.
  • You have an extensive vocabulary on Medical Terminology.
  • You have a bag full of wound care supplies in the car for emergencies.
  • When you pack for a vacation and the first suitcase is filled with supplies and equipment.
  • You find yourself more accepting of the struggles other parents go through.
  • When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).
  • When you’re unemployed or work part-time and it’s not because of the economy.
  • You’re constantly told chiches such as “God only gives special children to special people” and “Everything Happens for a reason”.
  • You have to explain to people that EB is not contagious.
  • When you constantly get asked “How do you do it?”, and you have no clue either.
  • Every new thing your child can actually do brings your to tears.
  • When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door
  • You have a researched short speech for people who ask about your child’s condition.
  • When you have your insurance ID number memorized.
  • When you know that time does not heal all wounds.
  • You discover that “specialists” really don’t know it all and you’re allowed to disagree with them.
  • When the secretary, principal and superintendent of your child’s school know you by name.
  • The love you have for your child overcomes all of those bad moments and days that occur, more often then you would like to admit.
  • You talk to other EB parents on facebook more than your real life friends.
  • Your retirement plan includes your child.
  • You can see beyond outward appearances.
  • When you find little pieces of Mepitel laying around the house everywhere.
  • You can pronounce “Recessive Dystrophic Epidermolysis Bullosa” correctly because you’re badass.
  • You go hour by hour, not day by day or week by week.
  • When you developed some serious muscles lifting the wheelchair in and out of the trunk.
  • You refuse to commit to anything, ever, unless you’re standing in front of the monthly calendar on your refrigerator.
  • When you realize you could get a job writing appeals letters to the insurance.
  • You have more meaningful conversations with your child’s nurse than your old friends.
  • When your capacity for hope is bigger than anyone else’s, that you know of.
  • You become the pain med fairy.
  • You can’t list all your child’s medications on one hand anymore. Or two.
  • When you can hear your child calling you across the house, with dad snoring next to you.
  • Your other children are far more grown up and mature than they should be.
  • When you make sure your purse has some extra gauze, scissors & syringes.
  • Your Facebook feed is jam packed with stories of kids like your own.
  • When your child’s doctors take orders from you.
  • People ask you how your child is doing and your only honest response is “He’s stable”.
  • You know more about Wound Care supplies than any Nurse.
  • When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.
  • When you get told all the time how special you are and while you don’t feel special, you like to hear it.
  • When you have more medical supplies in your house than a third world country.
  • When everyone knows your kid even though you have no idea who they are.
  • When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.
  • You celebrate what everyone else just takes for granted.
  • You realize that material wealth don’t mean a thing about how “blessed” you are in life.
  • When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.
  • When you learn to forgive people that leave ugly comments, judge you harshly or give you or your child nasty looks. You are a rock. You do not get dragged into drama. Nothing breaks you. You are strong!

Do you have more to share? Leave them below :-)
Love and Light,