What I Want Everyone To Know

I was recently asked the following question by a reporter: “What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?” So I wanted to share my answer here: I think the foremost thing I would like people to know about EB in general is that this condition exists and it’s horrible. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine a worse condition, ever. The pain the patients go through, especially in the worse forms, is unimaginable. Awareness is key. Without awareness we have nothing. Without awareness we can’t hope to raise funds to find a cure. Then IRead More

Unpredictable

When I was a 15 years old, in late 1979, I started a diary that changed my life. I was a very shy teenager, I had friends, but I was neither popular, nor confident, so I used this medium to vent in good ways and bad ways and it helped me understand myself. Let’s face it, being a teenager is hard. I see it daily with my 12 year old and he’s not even a teenager yet. My diary changed my life for many reasons; being able to release all my feelings without fear of judgement is huge in my view and much safer than the current overexposure of teenagers using Facebook to vent all their feelings. which couldRead More

Blog Quotes Part 2

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky in the end is my ultimate teacher. It’s because of his lack of bitterness, lack of hate, lack of negative thoughts, that I am becoming a better person. I would love a weekend away with my husband to feel like a wife and a woman, but an EB trained nurse to provide child care is nonexistent. I made peace with that. Being compared to others does something to our self-esteem that is extremely damaging.. I don’t particularly enjoy seeing him in more pain, but he has decided longRead More

Nicky’s Life Part 33

October 31, 1998 – Nicky was almost 2 years old on his 2nd Halloween. I decided to take him Trick-or-Treating at the mall and when we passed the Toy Store they had a new toy available, the Teletubbies dolls. Nicky LOVED the Teletubbies! He was in awe looking at the display. Lala & Po (and I can’t even believe I remember their names) were his favorites. At that time I watched every show he watched so I knew the ins and outs of the Teletubbies very well, lol. Just looking at this picture warms my heart because I remember clearly how happy he was to see the dolls! We got him both Lala & Po that day, andRead More

Hope Against Hope

I was speaking to a dear relative of mine a few weeks ago, and after I told her about Nicky’s antibodies issues that very well might prevent any cure that comes his way because his body will automatically reject it by “fighting” the new collagen that’s introduced, she asked me quite curiously how I can still have hope. My answer was swift. “I just can’t give up”, I told her. Nonetheless, it’s hard to have hope when there seems to be no light at the end of the tunnel, knowing that even if a light might be in our peripheral vision, it could very well be an illusion. Miracles happen every day. Why not one for Nicky? If IRead More

Daisy

You know there is a major dent being made into EB Awareness when movies are now being produced to bring forth awareness! This is HUGE in my book! GIGANTIC!!! The first movie, released in 2014, was called “Butterfly Girl” and was a documentary-style movie about the real life story of Abbie Evans. More info HERE and the movie can be downloaded via iTunes, Amazon, & YouTube. There was, of course, My Flesh & Blood back in 2001, a documentary about the life of Susan Tom, which I am humbled to call a friend, and her many adopted children, 2 of which had RDEB like my son. There are two other movies in production that I am aware of. The first one is calledRead More

Alex’s Video

I made this video for my online “baby loss” support group 20 years ago. We all made videos to “swap around” with other grieving moms to help each other out. I put the highlights of my pregnancy with Alex, the delivery and the funeral and I put it to music. I am still not sure how I did that without a computer, but, alas. I’ve always been resourceful. That tape has been sitting around for 20 years and I never watched it again. Now that I am in the process of digitizing all sorts of VHS tapes for posterity I came across it and yesterday I was strong enough to do it. I still had to look awayRead More

Where’s Your Tan?

Having grown up in Italy, where just about everyone I know goes to the beach to get a tan for a week or more during the summer, my pale skin was always something I had to defend. Even when I spent a week at the beach with my parents in 2012, I returned to a barrage of comments regarding the continued pallor of my complexion. I wore plenty of suntan lotion and spent most of the time under the umbrella, reading my favorite book, listening to music and inhaling the beautiful mediterranean sea air. No need to fry myself. I was never a fan of tanning. It’s boring. And it does not help that I’ve had a coupleRead More

Blog Quotes Part 1

This is the first of what will eventually be many posts over the next several months or longer of quotes pulled right out of this blog of mine. Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. While you stare at my child, is it too much to ask you to smile? A little smirk? A Wave? Small talk? “Hey kido, having a good day?”, anything will do. I promise you, he won’t bite. I have learned that life is far from fair and we would be better off flinging that thought as far from us as possible. EBRead More

Until It Happens To You

I have to admit I only heard the song by Lady Gaga “Until It Happens to You” when I saw her perform it at the “Oscars” this year. It was amazing. It was amazing especially since I wrote a blog awhile back about this particular… shall I say… “flaw” in our human existence. We seem to be ill equipped to understand something until it happens to us. Unless it personally affects us in some way, we can’t seem to put ourselves in those shoes. Because I’ve chosen to put myself and my struggles “out there” and up front with both losing a baby at full term and raising a child with a severe form of RDEB, I’ve becomeRead More

Nicky’s Life Part 32

October 2003 – Nicky was almost 7 years old when Connor was born. He used to love to just look at him. At times I would put Connor in his bouncer next to Nicky so he could talk and play with him. They were so cute! It’s hard to believe how different their relationship is now, but I do miss those cute old days… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 60 Comments

Personal Decisions

For many years now I often had people that care about Nicky telling me about or asking me why he hasn’t had a Bone Marrow Transplant. While I wrote in the book extensively about Nicky’s decision (because, make no mistake, he is in charge of his body and I’ve told him that since he was old enough to understand), I wanted to delve a little more into it. Nicky has given me a free pass to talk about EB as it pertains to his life long ago, so please do not think I am doing this behind his back. I wouldn’t do that. Never. As soon as I heard that Minnesota started doing the transplants back in… oh… 2007Read More

My Meaning of Success

Success means many different things to many different people. Some people associate success with money, tons of money. Some people associate success with having things, lots of things. Some people associate success with having a glorious career, or even fame. I used to think that way too. I worked hard but was trampled on by the greed of others in many occasions, most especially the one that led to my failed attempt in franchising a Domino’s Pizza store. I wrote the lengthy story for my book in an attempt to show my ambition but I had to take it out because the book was just too long, so I saved the story for my next book. Since Nicky’s birth,Read More

Friends

I was talking to my cousin the other day and I asked him if he was as happy as I was to have grown up in a world without computers. He concurred. And while we were actually discussing life in general, the one thing that came to mind after our talk is how the internet has changed friendships and the relationships we have with people in general On one hand, it’s fabulous. I was able to find old friends from High School and any school I attended prior to that and we were able to re-kindle amazing friendships. I will forever be grateful for that. I am also happy to keep in touch with many family members and friends scatteredRead More

Nicky’s Life Part 31

July 2000 – Nicky was 3.5 years old in this adorable photo of him hugging Barney in our home in California City. By then I had already started wrapping his whole body as much as I could for protection. I hadn’t yet started wrapping with padding to prevent his itching, maybe because his itching was not that bad at this point. Most of his wounds were still from mishaps, skin getting traumatized from everyday life. It was only later, closer to his 8th Birthday that his itching would cause most of his wounds and I started wrapping with padding to prevent his itching to cause further damage. Itchy medicine worked “okay”, but since it made him drowsy IRead More

21 Years…

Twenty-one years ago the unthinkable happened to me. I was 9 months pregnant and on the day that I was due, I just couldn’t feel the baby move at all. The following morning, at the Doctor’s office, I was given the devastating news that there was no heartbeat. The baby had died inside of me. “Fetal Demise”, they called it, although I challenge any mom 9 months pregnant to think of her baby as a “fetus”. We named our baby Alexander and buried him about a week later amongst grief that is hard for me to even comprehend, let alone explain. Alex became part of our everyday life. I have photos throughout our house of him or of meRead More

Nicky’s Life Part 30

June 2009 – Nicky at Camp Wonder! He was about to get on the “Dryers” bus with several other boys from his cabin, many with EB like him, which took him to the Oakland A’s baseball game. This picture makes me smile. Totally “Nicky”!!! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 60 Comments

It’s Exhausting…

Sometimes explaining EB and/or my life it’s exhausting. People that truly ought to know better, surprise me with their selfishness, with their eagerness to let me know “they have it bad too”, even though, when the chips are down, they wouldn’t trade their life nor their child with mine in a million years. It’s called empathy. It’s called listening, TRULY listening without feeling the need to compare or feel the need to put your 2c in. It’s sad when people that go through the trouble of asking me about my life don’t really want to listen, they only ask to make conversation and try to relate, even though that can’t possibly be done, unless you have a kid with RDEBRead More

The Plight of Orphan Conditions

Just recently a huge gift was bestowed upon me. The gift of no co-pays for Nicky’s supplies. This is no $20 co-pay, this should have been in the hundreds, even thousands (supplies come with a 30% co-pay), making taking care of Nicky almost impossible to afford. This was all in all a “new” issue I was dealing with. Since the ACA passed, insurance companies have been looking for ways to make more money, since their priorities lies with the stockholders and not the sick, so as of a couple of years ago supplies went from 100% covered to only 70%. Because, as we know, the sick are wealthy. Yes, that is sarcasm. While the supplier waved the co-paysRead More

Nicky’s Life Part 29

June 2005 – This is a very special photo for me because it has all my three boys together, in the only way they can be together. I have this one framed in the house. Because Alex is buried in Arizona (at the Queen of Heaven Cemetery in Mesa), I don’t have many chances to go visit his grave, so anytime I pass by Phoenix for any reason (which is not very often), I feel the pull to go bring some flowers to my angel. I’ve had wonderful friends and some family members every now and again bring flowers and send me a new photo, of which I am immensely grateful. Both Nicky & Connor are well awareRead More

My Amusing Italian Girl Problem

I am always looking for ways to take my mind off things, so coming across the many “Italian Girl Problems” memes is always a hoot for me. These are not exactly problems, are they? Just some fun stuff to put a smile on my face. While I can’t relate to all of them, of course, I can relate to many… such as nonna feeding us all the time, how we speak with our hands, or how we live for carbs etc, yep, yep, yep, all me. There are also some misconceptions though among these funny problems. The one misconception that has followed me since I came here in 1982 is that nobody ever guesses where I am from. EveryoneRead More

A Lesson in Compassion

Somehow, someway, life’s challenges and hardships help us evolve as human beings in a variety of ways. Having had hardships myself, and in turn, having met many moms who are disabled, or had to bury their children, or had children with profound disabilities, gave me an opportunity to learn compassion and empathy in ways people not exposed to this kind of life can understand. I may be able to explain how it feels to them, but I cannot make them understand it. Some people, however, seem to have an innate sense of compassion that always surprises me. Not having gone through any true tragedy or hardship, they have that empathy gene that people much older could only wish for.Read More

How I Deal

So many things happened these past few weeks that made me wonder about a myriad of issues. I start every morning with a good dose of “positive”, “funny”, “loving” or “inspirational” images I post on my sleepingangel Facebook page. Why do I do that? Because it helps me start the day in a good way, remembering to keep the negativity away. There is always that “friend” that must post negative stuff, so I give them the benefit of the doubt a few times until I get fed up and unfollow them. I have no time for that crap. You have every right to post whatever you want on your wall, but I have every right to unfollow youRead More

Updates on Nicky

Hello everyone! I just updated Nicky’s CaringBridge Blog with some info on upcoming trials for those interested with links etc. You do have to create an account to access it, but please know it’s free. I do try to keep sensitive information regarding Nicky’s health on that blog only because there are many troublemakers out there and I can block people access to it that have caused me grief in the past. Because of my tireless efforts in raising EB awareness to find a cure for the past 16 years or so, it has made me a target. Thankfully I can block people that say the craziest and rudest things so that’s the reason why I normally moderateRead More