Alex’s Anniversary

It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a lifetime of memories with someone that I loved before we ever met. Some of the hardest losses we experience as human beings are those involving children. They go against nature. Children aren’t supposed to die. In my world, however, they do. Oftentimes children with EB die before they’ve lived, like my Alex did. Yes, he had EB, but we did not know it at the time. In myRead More

Nicky’s Life Part 61

August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint to keep the thumb “out” at night and even after 3.5 years using that with the wrapping he lost very minimal web space. Of course his hands are far from normal looking, but he can use them, which it’s huge in my book. He truly cherishes his hands, so we’ll keep doing what we’re doing! More of Nicky’s story in the book… Thank you so much for yourRead More

The Truth of This Italian Immigrant

I am often asked how I moved to the US, what happened that made me leave my country, if I fled, escaped or what. The truth is not so clear cut, not exactly that simple. I didn’t wake up one day and decided: “I am moving!”. It was a succession of events. Let it be known, however, that if I had had to face the laws that are in place today, I would most likely not had been able to become a citizen. Whether I would be one of those infamous “illegals” or if I had gone back to Italy, it’s something I don’t know, even after having married a citizen… or two. Just recently in fact, aRead More

25 Facts about Me

In this world full of alternative facts, here’s some real facts about me. I will do one about Nicky too sometime!!! 🙂 1. I lived in 2 countries and in 4 different states – Italy & USA -New Mexico, Texas, Arizona and California. I grew up in Italy, and my heart is still there. 2. Except for a one-year and a half period where I was a ‘divorced mom’, Nicky never had a babysitter again. Connor NEVER had a baby sitter. If they are not with mom, they are with dad or at school. I take great pride in that, and even when I went to school and work, I did it during the hours that they wereRead More

Blog Quotes

Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does.  Strength has everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it. As a special need mom, I’ve had experiences where I had to fight like an insane person to protect my child. I had to advocate for my son with the school districts, rude teachers, bus drivers and clueless strangers, let alone nurses and Doctors that did not know anything about EB at allRead More

Yes, EB Children can be Hugged. Just Be Gentle.

A lot of times, when seeing articles posted about children with EB, we see these sorts of titles: Girl can’t hug parents because rare skin condition causes her to blister when touched Video: Mom Can’t Hug Baby  Little Boy Blisters When He’s Touched Due to Rare Disorder Adorable five-year-old girl can’t hug her mum because of rare fragile skin disorder Heartbreaking: Parents Can’t Hold Baby For Fear Her Skin Will Come Off ‘Blister baby’ whose skin is so sensitive she cannot be cuddled I’ve often had issues with these kind of titles, because they imply that we cannot touch or hug our children at all, but… I get it. You need a “grabbing” headline to get people’s attention,Read More

Thank You for Listening

Every now and again I get an email or a message from people I know and even from strangers telling me they’ve followed Nicky for X years and follow this blog and offer me  kind and compassionate words and I do not know why, but I am always surprised. Shocked even. It’s really nice to know people do listen. People do care. While I started this blog as self-therapy, most of the time I don’t think anyone will read it. I know it sounds strange, but that’s how it is. Then again, this probably has to do with the fact that I’ve kept a diary since I was 12, so this is just an extension of what I’veRead More

Nicky’s Life Part 60

Halloween 1999 – Nicky was almost 3 years old when I took him to the mall to trick-or treat. I always looked for soft costumes and this one of “Po” of the Teletubbies totally fit the bill! At the time we lived in Arizona. How cute is my little one? More of Nicky’s story in the book… Thank you so much for your support!! http://butterflychildamothersjourney.com Love & Light,   Post Views: 351

Moving Forward…

  As I was changing Nicky’s bandages last night I noticed how much better his wound mass is compared to just a few years ago. The cream (from the Stanford trial) and other things I’ve been adding to the various previous creams I used for the past few years have truly made a difference.  Our motto has been and always is “no wounds” and that’s why I over-pad areas prone to itching to make sure his skin can heal or does not get injured in the first place. Wounds for Nicky can be a big detriment to his health. Areas that get over-wounded have a tendency of eventually not wanting to heal at all, but if I canRead More

Blog Quotes

Even with all this evidence on how much my wrapping is working, they are STILL telling me I wrap Nicky too much. I swear, it will never end. Isn’t prevention key? My job is to keep my head above water for Nicky’s sake, which can be an unsurmountable task at times.  God can and will give you more than you can handle, it’s up to us to decide what can wait and what cannot. Last night I came THIS CLOSE at crying myself to sleep. I simply don’t understand why the people I love the most must be in pain and struggle the hardest. I will never get it, and God better have an answer for me whenRead More

Why I No Longer Get “Offended”

There was a time in my life where everything offended me. The worse of those times I recounted in my book, Butterfly Child. It was during Nicky’s second Christmas in 1997 and I was at my lowest low, the lowest point in my life. The following is an excerpt from Chapter 5: This was without a doubt the worst time of my life and all the heartache was taking its toll deep in my core. This time I was not suicidal at all, just really morose. Within the past 3 years I had a child that was stillborn at full term, a miscarriage, Nicky was born with this awful condition called EB, my marriage was on the skidsRead More

It’s not Political Stuff, it’s Human Being Stuff

Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe, for most people, being able to deduct medical expenses is not an issue whatsoever, but I am glad that pressure from the disability community got them to open their eyes. The fight is not over, as there are other things at stake. By reducing revenue by at least $1.5 trillion and increasing the deficit, the “Tax Cuts and Jobs Act” increases the pressure to cut Social Security &Read More

Nicky’s Life Part 59

August 1998 – When we spent several months in Italy in 1998 so that my parents could help me take care of Nicky, I had the opportunity to have my little guy spend quality time with my Nonna Rina, which is Nicky’s great-grandma (BisNonna). We would go visit her often and she would always ask for kisses. It was so sweet. I miss her dearly, but I know she had a long life, passing away only a couple of months short of her 102nd birthday. The following is from my book “Butterfly Child”: “When we came back from our trip we had a fabulous party for my grandma’s 95th birthday. It was a day I will never forget.Read More

Standing Up For My Son

As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school telling me how he successfully dealt with whatever situation he was confronted with. Nicky however, is a different story. Raising a child with a rare disease is profoundly confusing and complicated. With something like Epidermolysis Bullosa, we are forcedRead More

Have A Cup Of Positivitea

I pride myself in being even-keeled. Very little truly upsets me anymore. Looking at the bright side? That’s me. I let a LOT of things go. Ask my husband! He is often more upset about stuff than I am, even when the problem is mine. I tell him to chillax. My issue though is that sometimes I refuse to let things or people upset me for so long that when the proverbial drop makes the glass overflow, I tend to act abruptly over a seemingly little thing. Then again, sometimes, they are not little things at all. In the past I have had friends that treated me with such disrespect and I let it slide for so longRead More

Blog Quotes

For many years to come we survived on donated bandages or, worse, washed and re-used bandages. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes.  The death of my child changed me in ways I cannot ever explain nor express the monumental importance of. When you hear a bereaved mom mention the name of their child in heaven, just listen. I will continue to fight, just as all parents on this journey do. We will fight on all levels, with all the love we can muster, because our children deserve our best. Sometimes I wonder if my tiredness is not strictly physical but mental as well. Can anyone feel tiredRead More

The Hard Work of Being Hopeful

Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism, bigotry, prejudice, misogyny, homophobia and discrimination. And while I encountered this cruelty in my life before my children were born-and stillborn, I just didn’t know how real it was until I became a special-needs mom. I am a little weary taking Nicky anywhere with me-a simple trip to Target can be filled with long stares, ugly looks and whispers. It’s unconscionable, but that’s how it is. This isRead More

Nicky’s Life Part 58

January 2008 – Nicky showing his flexibility! This is one of the few things he can do with his body. He may not be able to walk or move much, so it’s always fun for me to see this fun/crazy side of him. In this picture Nicky was 12 and he hasn’t really changed much at all, he truly looks the same!!! That smile and the ability to not think about his condition and concentrate on doing what he can do is something I truly admire about him. He does not dwell or despair on the ugliness of his EB. He loves his routine and does what he can do instead. I don’t know if there will everRead More

Help Nicky raise EB Awareness!

Nicky was born on November 25th, 1996 and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). EB is a rare genetic skin disorder, his body does not produce a vital protein that glues the layers of his skin together, hence the slightest friction causes painful blisters and wounds. His body has to be covered with special wound products and bandages to allow his wounds to heal and protect his skin from further damage. There is no treatment or cure at this time. You can help Nicky and all the children like him by helping us raise awareness! Like and share this image today. Follow these links for more information: Debra of America EB Medical Research Foundation EB ResearchRead More

Gene Therapy for Epidermolysis Bullosa

This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in Germany that was treated with skin grafts from Dr. De Luca in Italy is making the rounds around the world. (Here’s the link for the CNN article). The original research article that was published on Wednesday (the link is here) explains how it was all done. It’s complicated stuff, but here’s a quote from the CNN article that explains how it works: To obtain the skin’s stem cells, the doctors took a small biopsy — only accounting for 1½ square inches — from an unaffected part of the boy’s skin. The stem cells were processed by De Luca in Italy. A healthy versionRead More

Blog Quotes

Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. I don’t intend to host a pity party by sharing my pain and struggles — by sharing, I think I help open minds to what Epidermolysis Bullosa looks like.  The problem with the scarred areas is that they are very fragile. There is a big difference in how much pressure I can put on areas of his skin that have never been wounded and chronic ones.  Those that have either Recessive Dystrophic EB or JunctionalRead More

We need MORE EB Awareness!!!

Several years ago I happened upon a reply to a post about a child with severe RDEB in a special need parenting forum and one of the commenters stated that they should just “kill him”. That comment got a lot of likes and it got me very, VERY, VERY upset. I was irate. I could not sleep for days. That same week another EB mom had to defend herself from similar commentaries. On her blog she stated that her child could breathe and eat on his own, it’s not like he was on life support. What was she supposed to do? Starve him to death? Not change his bandages and hope for an infection to take him or…Read More

Nicky’s Life Part 57

March 2014 – When Nicky was 4 years old I decided that perhaps playing video games would be beneficial to him and something he could do without getting hurt. I bought a used Super Nintendo and we started playing Mario Kart every day. He loved it. I wanted him to win, so I would sit in 2nd place and throw turtles at anyone that passed me. Before long Nicky got so good he not only didn’t need my help, but when I tried to win, I hardly ever could!! Nicky’s love affair with Mario and the gang continues till today. 3.5 years ago with the help of a variety of wonderful souls I was able to redo hisRead More