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 Junctional Herlitz EB bear the unimaginable cross of knowing that not only they have to constantly suffer, but eventually the condition will take their life, many times sooner rather than later. I’ve readRead More →

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… go get a gun? Ugh. How insensitive could these people be? Plenty. As I’ve learned over the years. It’s so easy to discard a life, a human being, when it’s not yourRead More →

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 his bedroom that was in dire need of revamping and it was all decorated with Mario stuff. He loves it. More of Nicky’s story in the book… Thank you so much for yourRead More →

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 fancy name for a condition of the skin where a certain protein called “collagen”, which acts as a glue between the epidermis and the dermis, is missing or the body simply does notRead More →

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 patients are, well, he’s not. Needless to say he agreed. For this TV show, not only they wanted to show EB per se, but they were interested in showing how this condition wasRead More →

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 in everything.  If I can leave you with any message today, just know that Empathy Matters. It really does.  It’s called empathy. It’s called listening, TRULY listening without feeling the need to compareRead More →

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’s POV about it. Today, for example, I realized I felt low because in a way, my life is on a “repeat” button. Day after day, week after week, year after year, IRead More →

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 the care, education and advocacy he received as a result of my efforts. Of course, that would be true for any child, disabled or not, but in my case, I felt I wasRead More →

“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 is to unfollow, I rarely unfriend, but sometimes I am so heavily disappointed in people and so disgusted by their behaviour and how they think that I not only unfriend but block. IRead More →