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

It’s OK to Ask Me or Nicky

I was reading the comments left underneath the video of Nicky and I noticed a lot of people are asking the same questions over and over again. But… just not to me, to the “wind”, so to speak. So, I want everyone to know it’s ok to ask me or Nicky questions. In fact, we encourage it. You can either ask it in the comments below this post or you can come on over to his FACEBOOK PAGE and either post your question or send a message to the page. Here’s a description of Epidermolysis Bullosa taken from my book Butterfly Child: “Nicky’s condition is called “Epidermolysis Bullosa”, he has the Recessive Dystrophic form. This is a long fancyRead More

Nicky featured on TV show “Body Bizarre”

It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does. I was contacted by Barcroft TV Productions last fall after Kate, a producer, came across my book “Butterfly Child” where I wrote about Nicky’s life with Epidermolysis Bullosa. She wanted to know if Nicky might be interested in telling his story for this show. Nicky is always VERY open for awareness, he wants a cure, and he’s not, and never has been modest about taking photos of his wounds etcetera. I know many patientsRead More

Blog Quotes

Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever. Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and Nicky once he was old enough to understand – had the final say inRead More

Mental Struggles

Every three months I have an appointment with my psychiatrist and I strangely look forward to it. He is not a therapist per se, we do talk about my mental struggles, but I do not spend an hour blabbing about my problems. I say “strangely” because before my appointment I am forced to do an inner assessment of why I am feeling low lately so I can accurately explain myself to him. I am not used to explore my inner feelings, I have to force myself to. I am not used to try to figure out why something bothers me, but one thing is for sure, it does help to put things into perspective and get an outsider’sRead More

Nicky Life Part 56

August 1997 – Nicky and I on our way to our anniversary dinner. ~ Excerpt from the Book “Butterfly Child” “The Physical Therapist became sort of a confidant; after all, I saw her twice a week and I felt she was one of the few people that might have answers to a question I was constantly asking myself: ‘Is this normal?’ It’s just the nature of having a child with a disability and not having another child to compare him to. Sometime it was normal, but most often it wasn’t. I was determined to give my son a quality of life that was as high as I could make it, and I knew that was dependent upon theRead More

I care too much, and it’s OK

“I care too much, and it’s OK. I will not let anyone tell me I am wrong to love, to have empathy or compassion. Period.” That is what I posted on Facebook this morning with this image on the right from this great Minister John Pavlovitz which I’ve come to greatly respect. What prompted this post? Basically the hatred that I see from my so-called “friends” and people that I once admired. People that have nothing better to do with their day but spewing uncompassionate statements about the poor, the needy, the handicapped, the immigrants, you name it. The bullying and condescension over the less fortunate is at an all time high. It’s disheartening. My standard operating procedure isRead More

We Judge & It’s Wrong. It’s Just Wrong.

I was reading an excerpt of the book by Taraji P. Henson (Around the Way Girl: A Memoir) about her life as a single mom and it hit me hard. Harder than I imagined. I read and re-read the few sentences and I felt as if I wrote them myself. Needless to say it’s next on my “to read” list. Taraji was married to what she calls her “forever man”, her first love, but over the years he eventually became physically abusive.  It took guts, but she decided to leave him-which was a sound decision as it saved her and her son’s lives. Unfortunately this decision opened her up to many judgements by people who love to judgeRead More

Blog Quotes

Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt that I know what I am doing. I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.    I never learned to look down on the poor, the disabled, the disadvantaged, the elderly, and I never will. I don’t judge people I don’t know because I don’t know their story. I don’t know their sacrifices, IRead More

Caring Matters

The other day I came across a post about “9 things Italians living in the US will miss“, and while I concurred with everything posted, the one that spoke to me most was the one about family living close by. Oh, how I miss that! But it goes further than that. It’s the whole culture, the whole mindset that came to mind while I was reading this post. The mindset of caring for one another in a broader sense. In the U.S. most kids move away from home, following job opportunities across the country, moving far away from home, often right at the age of 18. It’s not like Italians are not like that, but they are theRead More

Nicky’s in Charge

The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the attempt of healing the area, the opposite happened. It’s now worse than it’s ever been. The whole area is a BIG open wound. Ugh. It’s always a shock to me that I can even do this. Before Nicky was born I was an absolute wimp, who could not watch my own blood being drawn. Amazing what we learn to do out of love for our children. WIth his lower back now a bloody wound, my heart sank. Because of that, I resolved to make sure to use my concoction on it as well-I haven’t because this is an area veryRead More

Nicky’s Life Part 55

August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays it’s painful for him to stand, he’s just too heavy. He’s an adult now. Notice I am holding his arms and not his poor little hands. I cringe when I see the awful state of his hands. This is one of the horrible things that RDEB (Recessive Dystrophic EB) is responsible for, the scarring and mittening of the hands. We would end up doing his first hand surgeryRead More

Things Don’t Get Easier

From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher.” I wrote this sentence in my book to illustrate how, as time went on and Nicky got older, some things got easier, while others got tougher. At 20, Nicky can tell me what hurts, where it hurts, how to make it better,Read More

Blog Quotes

As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final. There is no hope to be had, it’s over. Having lost a baby at birth, I can honestly say, from first-hand experience, that the grief is absolutely and completely heart-wrenching. It is horrible. I lived in a sea of tears for months after Alex was stillborn and ’til this day the topic is just too much for me. The truth is, I love my Nicky just the wayRead More

Ancestral Discoveries

Everyone in my family knows how obsessed I am about genealogy. Completely obsessed! So it should come as no surprise that one of my favorite TV shows is “Who do you think you are“, who just wrapped up another season on TLC. Up until this past season, my favorite episode hands down has been the one where Rita Wilson not only finds out she had a brother that died as a baby, but also reunited with her uncle she didn’t even know existed! The reunion with the 96 year old was one that left me teary eyed and it was the only episode I watched multiple times. Who can forget what he said to her when he hugged her?Read More