If I had to pick the most challenging year of my life, besides the year I spent crying after Alex died, it would have to be Nicky’s first year. Hands down. I know. It’s apples and oranges. The year I spent crying over Alex’s death is completely different than the year I spent adoring and caring for my little guy. It was wonderful to finally be a mom, but the challenges I faced were so compelling, at times I wonder how I faced them all without my family’s help. As a matter of fact, I had no help for the most part. My mom, bless her heart, and thank my lucky stars, was there when Nicky was born and stayed until Nicky was about 6 weeks old (my family lives in Italy), later my MIL came to help for about a week because I was going out of my mind.Read More →

As some of you may or may not know, my son Nicholas was born with a rare and incredibly painful skin disorder called Epidermolysis Bullosa, the Recessive Dystrophic form. He will be 16 years old in a couple of weeks. A photographer, a dear friend that I met at the College I am attending, wants to make a difference and help the cause, we need a cure and we need it NOW! She started photographing Nicky’s life and him living with EB in an effort to make a difference. This is a project that may take months to finish. She is photographing Nicky’s bandage changes, him at school, at the doctor, at the hospital and in whatever situation you can imagine to help gain a broader understanding of what his life is like. She has started a Facebook page for this project where she is sharing her thoughts and herRead More →

I was asked once why I do not use my personal blog to talk about my son or EB, as others do. The answer is a very personal one and a respectful one. I want to keep everything separate. My life is such a roller coaster right now, and has been for nearly two decades, that if I don’t keep my thoughts straight, I might lose my mind. I keep a blog about Nicky, where on occasion I always talk about my husband’s health at Caringbridge (http://www.caringbridge.org/visit/nickyz), and I talk endlessly about EB at my Blog at the EB Info World website (http://blog.ebinfoworld.com/). I even keep a blog about my photography and graphic design (http://blog.sleepingangel.com/). But this Blog is about me. The person that plays the role of caregiver, mom, nurse, student, cook, and of course there is the cleaning, the laundry, the grocery shopping, mom’s taxi… and the listRead More →

I wrote this as a Facebook/MySpace/Blogspot post a couple of years ago-I tweaked it and updated it a bit but I felt this information is worth sharing and keeping ‘out there’ so to speak. There are quite a few family and friends, including some I’ve reconnected with recently, or within the past couple of years who are not sure what Nicky has or what’s going on with his health, so I figured I’d clue everyone in because in the coming years I will need your support more than ever. In a nutshell, Nicky was born with a skin disorder that falls under the umbrella of Epidermolysis Bullosa, a fancy Latin term meaning Blistering of the Epidermis. There are three main forms of EB, Nicky has the Dystrophic form, the form that makes the deepest wound-a wound that travels down to the dermis, also similar to 2nd degree burn-like wounds. HisRead 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 →

Once again I am forced to post these pics on my blog instead of, say, Facebook or caringbridge due to Facebook’s constantly deleting my wound pics and caringbridge not really giving me much space or a way to clearly display these. The detailed blog about the cast removal is here: http://www.caringbridge.org/visit/nickyz/journal Below is the hand carefully re-wrapped by the PT ladies after the cast was removed. He has a splint under to keep the wrist straight and the hand open.   Below is the hand unwrapped. The thumb may not look like it’s way out, but it’s quite a bit more out than it was, Nicky is absolutely thrilled. The index finger is not where we were hoping, but it’s better than it was and we’ll do physical therapy to pull it back more while the skin on it is still “soft” from surgery. Will explain more on Caringbridge on what that means…   ThisRead More →

If you’ve ever watched an episode of CSI you’ve seen gruesome stuff. You would have seen the re-enactments of a murder, how a knife or a bullett entered the victim’s body, or the doctor performing biopsies. You would have seen hearts or brains being handled, throats slashed and worms devouring a cadaver. We’ve even seen a body being swallowed by a python-and then regurgitated. It’s all good and fine when it’s for entertainment purposes, but when it comes to reality, some people draw a line. Why?? Why is it ok to show gruesome things on National TV while the wound of a child suffering from EB is considered offensive and reported as inappropriate? EB Awareness week was just upon us and silly me, thought that to really know what EB ~Epidermolysis Bullosa~ patients live through was to show what is going on under the bandages. A sea of wounds. The reactionRead More →

The last week of October marks ‘EB Awareness Week’. It is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease. EB might be rare, there are approximately 600 patients with the same form of EB that my son has in the United States (which is the Recessive Dystrophic form), but its rarity should not deter people from helping in any way they can, even if the only thing they can do is send a tweet or post something on their Facebook wall with a link to one of the main organizations that are looking for a cure, such as Debra (http://www.debra.org/) or the EBMRF (http://ebkids.org/). After all, EB was ranked as one of the ‘worse’ disorders in the world, making the top 10 ‘Hell on Earth’ onRead More →