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 →

Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment with the Pediatrician, she stated to me that the referral had to come from ‘her’ for the Insurance to even ‘look’ at it. Well, I wish someone… anyone really, would have told meRead More →

One of the most frustrating parts of having a child with EB is that I often felt as if I was abandoned. Not only abandoned because I had nobody to help me with his extreme needs, but abandoned by society in general. So much is available for families that have children with more common conditions, but I always felt EB felt through the cracks due to the rarity of the disorder. This excerpt from my upcoming book ‘Butterfly Child‘, due out in late 2014, speaks to this sentiment…      One of the other EB moms I knew called me one day to ask me a question I never once thought of: “Did your Insurance, Social Services or any other organization or entity come to the hospital when I had Nicky offering me services or anything to help me take care of Nicky?” The answer was, of course, “No”. She hadn’t eitherRead 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 →

In late October 2010, a little over a year ago, I put my heart on a sleeve and vented. My opinions are not those of a politician I chose to believe, or handed down by a parent, since my parents never talked about American Politics and I had no idea how my dad felt about politics until recently; my parents live in Italy BTW. My opinion does not come from a TV channel, newsprogram or a newspaper I chose to believe. My views and opinions come from my PERSONAL experiences. It’s truly as simple as that. My life. Period. I remember vividly when Clinton became president. I couldn’t yet vote, but I wasn’t happy. I had been a big fan of Reagan/Bush (wasn’t everyone?), so the fact that Bush senior didn’t get a second term was inexplicable. I thought he did a great job with Desert Storm and other thingsRead More →