“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 →

I was reading an excerpt of the book by Taraji P. Henson (Around the Way Girl: A Memoir) about her life as a single mom and it hit me hard. Harder than I imagined. I read and re-read the few sentences and I felt as if I wrote them myself. Needless to say it’s next on my “to read” list. Taraji was married to what she calls her “forever man”, her first love, but over the years he eventually became physically abusive.  It took guts, but she decided to leave him-which was a sound decision as it saved her and her son’s lives. Unfortunately this decision opened her up to many judgements by people who love to judge others in situations they know nothing about. All of a sudden she was a “baby mama”. People started assuming that if there was no diamond on her ring finger, she must haveRead More →

Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt that I know what I am doing. I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.    I never learned to look down on the poor, the disabled, the disadvantaged, the elderly, and I never will. I don’t judge people I don’t know because I don’t know their story. I don’t know their sacrifices, I don’t know their struggles. I know nothing. I don’t judge, period. The truth is that I learned over the years to always look for a silver lining and put things into perspective.Read 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 →

The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the attempt of healing the area, the opposite happened. It’s now worse than it’s ever been. The whole area is a BIG open wound. Ugh. It’s always a shock to me that I can even do this. Before Nicky was born I was an absolute wimp, who could not watch my own blood being drawn. Amazing what we learn to do out of love for our children. WIth his lower back now a bloody wound, my heart sank. Because of that, I resolved to make sure to use my concoction on it as well-I haven’t because this is an area very difficult to bandage and using the cream makes the bandage slip around quite a bit and Nicky hates that. It’s one thing to use the cream on areas where we can bandageRead More →

August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays it’s painful for him to stand, he’s just too heavy. He’s an adult now. Notice I am holding his arms and not his poor little hands. I cringe when I see the awful state of his hands. This is one of the horrible things that RDEB (Recessive Dystrophic EB) is responsible for, the scarring and mittening of the hands. We would end up doing his first hand surgery a year later and we started wrapping it ever since. I wish I could/would have done it right away, but I did not know hands could web. Nobody told me and theRead More →

From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher.” I wrote this sentence in my book to illustrate how, as time went on and Nicky got older, some things got easier, while others got tougher. At 20, Nicky can tell me what hurts, where it hurts, how to make it better, when to change his bandages and is practically in charge of his well being, to which I oblige, but his inability to walk anymore or even move at times and my inability ofRead More →

As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final. There is no hope to be had, it’s over. Having lost a baby at birth, I can honestly say, from first-hand experience, that the grief is absolutely and completely heart-wrenching. It is horrible. I lived in a sea of tears for months after Alex was stillborn and ’til this day the topic is just too much for me. The truth is, I love my Nicky just the way he is, I just want the EB to disappear. If there was one thing I would like to make sure everyone knows is that every special need parent is indeed an EXPERTRead More →