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 →

I was watching “The View” this morning and it got me real upset. Megan McCain, who has no children, let alone sick children, can spew out her superior “Pro-Life” views (It’s “Murder”” she screams, over and over again), but what begs the question is WHY her party consistently and persistently doesn’t care about children when they get out of the womb, you know, those that are already here and suffering. I’ve made no secret of the fact that I’ve had TWO bankruptcies to try to take care of my child, who was born with Epidermolysis Bullosa, and I ALWAYS had insurance. Him being born with EB is not a choice I made, it’s what life handed me. When Nicky was a baby he cried for hours in pain, even if I medicated him, while standing over him trying to change his wound bandages. The first time he slept through theRead More →

Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me of the opposite, I choose to just live my day without comparing. Do not let anyone tell you that is foolish to have hope. It’s what keeps me going. Hope is that little bitty light at the end of the tunnel that keeps you moving forward.  I will keep fighting for decent health-care, for women’s rights, for decency, for LOVE and reject hate at every cost. My secret weapon is Faith, Hope & Love. Nicky hates EB. Hates it. At times he’s absolutely livid with anger over his condition. It’s not often, mind, but it does happen. Nicky didn’t comeRead More →

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 is why I am so very thankful for the people that are kind to us, we really need it. No, special need parents didn’t ask for this. Neither did we. Like most inRead 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 →

On my last post I talked about Insurance Companies and the hell they put me through the past 17+ years. I also explained why they bother me so much-the endless bills they do not pay or refuse to pay when they should, my two bankruptcies, and the simple fact that they are making our life harder than it already is. Having a medically fragile child is not for the meek, you have to be prepared to do and fight things on a normal basis that make you more a nurse than a caring, loving mother. We have to do things no mother should have to do. All I should do is hug my child, soothe, explain and love, but on top of that, I have to change gauze on wounds so nasty they would make any medical student gasp. I remember, as a matter of fact, one particular medical studentRead More →

I have to admit it. Through my trials of the past nearly 18 years, not much seems to bother me anymore. I am amazed at the thick skin (pun intended) I’ve developed over the years. I chuckle daily at the things people complain about on Facebook or other social networks, and I know I learned a lot and have come a long way from the teenage girl whose ego was easily bruised. I strive to be the gal who does not care about what people think, what people do, how people behave, but when it comes to my children, some things I just can’t shrug off so easily. But maybe, when it comes to my children, it should bother me, or should it? “Yes, it bothers me” #1. I suppose the biggest pet peeve I have is how every now and again some folk talk about how God or “Nature” punishesRead More →

“Everywhere around the world, they are coming to America”… that’s the words of a song  by Neil Diamond which always pulled at my heartstrings. America always enticed me, and while I never planned to live here per se, the idea of adventure, success and fun was always synonymous to it. I grew up in Europe, Italy to be exact. I never realized how different growing up there was until I now compare my son’s childhood in the US with my nieces and nephew back in Italy. There is no comparison. Apples and Oranges.  I can’t even say that one is better than the other, it all depends on what is important to you. Having lived in both places, I have an unique prospective, I can actually compare and contrast without being biased. For example… I love the team spirit of American High Schools, the willingness to make school ‘fun’ no matter theRead More →

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002. I love to write, it’s almost  part of me to be able to express myself this way, I truly enjoy it, however at times trying to describe some events and the knee jerking reality smacking you in the face is not exactlyRead More →