I’ve been lucky. I come from a very loving family. My husband is amazing and a great dad. Even my ex is a truly caring dad. My kids are the most amazing, loving, compassionate people. I am so proud of the young men they have become. I like to think I have great taste in friends, as some have turned out to be impeccable human beings, but the past few years, it seems as if hate is everywhere. I don’t remember this kind of vitriol before then, perhaps the advent of social media is enhancing it, but more and more, people are angry, hateful, selfish, hypocritical, self righteous and judgemental. I am a blocker. I may not unfriend people whose posts are negative, insulting or toxic, but I do unfollow, mute, or whatever social media’s answer is to “not see” the hate. Every now and again someone deeply disappoints me.Read More →

Yesterday morning I had a Doctor appointment and as I was sitting in the waiting area I struck up a conversation with an older gentleman looking lonely. I normally don’t struck up conversations with strangers very easily, but he looked friendly with his fluffy white mustache, and I love senior citizens as a whole, so we started talking about the desert being in bloom and gardening. When I started telling him about my 86 year old dad and his garden in Italy and about my grandparents’ mini-farm they had in the 60s and 70s he got really silent and then blurted out, without warning, how he would “never” go to Europe because of the “muslim” situation. To be honest, I was a little baffled at this comment. I’ve been in Europe as recently as this past summer and I felt actually safer there than I am here all things considered. IRead More →

I am a very spiritual person. I grew up catholic and I have attended service at many different churches from many different denominations, mostly to satisfy my curiosity, so I am very well aware of how incredibly sensitive this issue of religion is. Your beliefs are important and they should never be belittled nor should you ever be questioned about them.  It’s because of this that I am just very surprised when people start “bragging” how they prayed, and their illness either vastly improved or even disappeared. Please don’t misunderstand me. I do not think it’s bad to be thankful, nor I think it’s impossible for any prayer to get unanswered. As a matter of fact, gratefulness is incredibly important and I do believe in miracles. What I have an issue is when people in general point fingers at others, and especially at parents of children with special needs orRead More →

It seems to me that every time I turn on the news lately there is someone telling me I should fear something. I ought to fear this, be angry at that and hate the other. I also noticed that the people that buy into this way of thinking are extremely depressed, suffer from anxiety or are somewhat… how shall I say this? A bit egotistical. Everyone is out to “get them”. Just this morning I read the news of a 16 year old boy with RDEB like Nicky that passed away. Let me tell you something. It would take a LOT for me to take the advice of a newscast full of notions of fear, anger and hatred, when the scariest thing that could ever happen to me is staring in my face day in and day out. I refuse this notion. If there is anything that my children haveRead More →

Sometime ago I decided not to be angry anymore. I didn’t want to be angry at EB and what it was doing to my son. I was done blowing my lid over things I had no control over. I was tired of being depressed all the time. I was tired of being overwhelmed. I was done with all of it. I wanted to smile. I wanted to be happy. But how could I? I was on a journey. I was also tired about being offended at stupid crap that did not change my day to day life, and also done with defending my point of view about things. My beliefs are my beliefs, I don’t need to get into an argument with someone nor belittle anyone else for not having the same beliefs. This also meant I didn’t need to shout my beliefs through the rooftops to make sure they wereRead More →

I know for many, the thought of an “afterlife” or the idea that our soul survives is not something they believe in or even contemplate, but for me, it has become an absolute certainty. I’ve lost count of all the little things that have happened over the years that leave no doubt on the subject. Balls of lights in my bedroom, Alex’s photo falling on his birthday, a strange presence laying next to me in bed, feeling as if I was being hugged one night I was feeling particularly bad… and on and on… I’ve had my share of encounters to know this is not my imagination, and a psychic I went to confirmed a few things without knowing anything about me. I mean, this woman knew the layout of my living room and told me things there was no way she could have known. I guess I feel soRead More →

I just started listening to an audio-book today by Rhonda Byrne called ‘The Power’ and it’s truly helping me start the New Year in a more loving note. Truly, the more I live the more I realize the power of Love is life changing, but I never realized how much. Thinking positive, believing in the impossible has changed my life in ways I cannot even start to explain. It all started in the most unlikely of ways, in late 2001. At the time, I was upset, negative, argumentative, depressed, not in the best of places. You would not have liked me at all, and many people didn’t and were not afraid to tell me so. I was divorced, living alone with my son Nicky which had one of the most severe forms of EB, with my family half a world away, without any help and with only myself to rely on.Read More →

Just the other day I ran across an article on Redbook magazine asking “Would your friends be there for you in a Health Crisis” that made me stop cold. As I read it, I was nodding. Oh yes, I’ve been there. You see, as I explained, or at least tried to explain in my book ‘Losing Alex‘, I was completely unprepared for the heartfelt amount of support-and the enormous lack of it after the unimaginable happened and I had to bury my first born. Then, when my son Nicky was born with a horrid disorder and the Doctors gave him a year to live, it seems as if everyone disappeared. Everyone. Well, maybe not everyone, but it sure felt like it. My immediate family (my parents and my sisters and their families) have always, always been there for me, but they live on the other side of the globe, so inviting them forRead More →