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 →

Everyone in my family knows how obsessed I am about genealogy. Completely obsessed! So it should come as no surprise that one of my favorite TV shows is “Who do you think you are“, who just wrapped up another season on TLC. Up until this past season, my favorite episode hands down has been the one where Rita Wilson not only finds out she had a brother that died as a baby, but also reunited with her uncle she didn’t even know existed! The reunion with the 96 year old was one that left me teary eyed and it was the only episode I watched multiple times. Who can forget what he said to her when he hugged her? “I had to live this long to finally meet you!” This season though, the handsome John Stamos (I could watch this man do anything! ) was in for a surprise as well.Read More →

“This message is so simple, yet it gets forgotten. The people living with the condition are the experts.” I was reading an interview with Michael J. Fox on a magazine and when I read that line I had to underline it a million times. Not only because it’s true, but because it reminds me that asking my son how he feels or what his pain level is on a daily basis is so crucial. Nicky is a pretty brave individual, and he never truly volunteers this information unless it becomes so over the top painful that he has no choice but tell me so I can give him some pain meds. He’s spoiled me in many ways, but he reminded me to ask before doing anything to him or ask permission a couple of weeks ago and I felt horrible about it. I apologized and told him I will tryRead More →

July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Dawes Glacier. Following is an excerpt from the Book “Butterfly Child”. In early 2012 a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysis Bullosa and arrange and pay for holidays, short breaks and special days out for sufferers and their families/carers. I was happy to help this woman spread the word about her foundation and then several months later she asked me if Nicky had in mind a place to go for a vacation. “Oh, I don’t know” I told her. Nicky was having his hand surgery at the time and things were hectic with my school, so I kind of let it go, but when she asked me again several months later I went and asked Nicky if there was aRead 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 →