A couple of years ago, in the name of being “supportive” in regards to Nicky (or so he claimed), someone told me “At least he’s not dead”. Apparently this individual had lost two cousins to some condition he did not identify and that was the reason for his statement. When I was outraged and said “gee, thanks!”, he did not apologize, either. He didn’t think he anything to apologize for, imagine that. It was certainly not the first time someone was not supportive at all, claiming to be, and it will most certainly not be the last. Empathy and Compassion are not something many people excel at. Sadly. Please everyone, allow me to share a few thoughts: Know that anything that starts with “At least” is not supportive at all, to anyone. Least of which making me or anyone feel lucky… or guilty (depending on how we look at it)Read More →

It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a lifetime of memories with someone that I loved before we ever met. Some of the hardest losses we experience as human beings are those involving children. They go against nature. Children aren’t supposed to die. In my world, however, they do. Oftentimes children with EB die before they’ve lived, like my Alex did. Yes, he had EB, but we did not know it at the time. In my world, filled with families dealing with Epidermolysis Bullosa, children are gone before they’re healed. It’s tragic and gut wrenching, every single time. I cannot say I ever got used to it, andRead 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 →

“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 →

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 the minority. Money does not drive us. Family does. We are always together, while the only time a whole family comes together in the US is for big holidays such as Thanksgiving. So,Read More →

Of all the crazy TV shows I watch, one of the silliest must be “The Real Housewives of Beverly Hills”. I think it’s silly mostly because we see what people with an insane amount of money do, like taking a swan to the veterinary, buy a $190,000 ring, travel halfway across the country just to look at a tiny horse with a too-too, or get your bum waxed on national TV. While as human beings, I do believe these women are “mildly” interesting (truly, take the money away and what do you have left?), the reason why I tune in is to watch Yolanda.  I love Yolanda. I love, love, love Yolanda. The moment she was introduced to the show a few years ago, I felt some sort of kinship with her. Aside the fact that we were both born in 1964 I am not really sure what it is, but she isRead More →

I wrote about this subject before, but today I came across this website that made me laugh out loud… mainly because their message spoke to me. Take a peek at these sympathy cards by Emily McDowell, here’s one on the right —> It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman. And I am the kind of mom who is flipping DESPERATE and will try just about anything, yet some of the emails with suggestions I’ve gotten over the years border on the absolute ridiculous, bordering on insanity. Want an example? “Burn his skin, it will regrow without EB” someone told me once. I have many more examples, but I will spare you. Trust me, this stuff just can’t be repeated. Some advice, on the other hand, is so bottomRead More →