If there is one thing my parents (seen here in a photo shortly after their wedding in 1957) instilled in me at a young age is to be weary of friends. My mom and dad didn’t have many friends, but those they did have were really, really great; however, to sort out the gems from the fakes was not an easy task. Both of them had told me stories about how they were hurt by friends in many different ways. Also, just because someone is related to you, it does not mean they care. My mom’s brother and his children are a prime example of this. I even tried over the years to establish a line of communication with them, which worked at times, and provided the opposite effect on others. When my mom’s sister (my GodMother, my middle name is her first name, I loved her dearly) died unexpectedlyRead 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 always found it ironic that the last day of EB Awareness Week falls on Halloween Day. After all, for many EB Children and Adults, being covered in gauze is a daily routine, not a once-a-year costume. I further wish I could say that I liked Mummy costumes or that I would ever dress myself or any my sons like that, including my son with EB, but I often felt a bit uneasy about it. No thanks. I hate gauze. Really, I mean it, I HATE gauze. Gauze to me, and more so to my son, represents that thing that we have to cover wounds with. Those nasty, painful, bloody wounds that make my son’s life miserable. They represent what we hate the most about the condition, the time we have to spend unwrapping, medicate and rewrap every single day of our lives. We can never get away from it, never takeRead More →

Steel Magnolias will go down in history, along with ‘It’s a Wonderful Life’ and very few others, as a movie where there is a single scene that makes me cry… if not sob, each and every time I watch it. This scene, acted by Sally Field, It is so powerful and so well acted, I feel I am her. Of course, at the time of the movie release, I was yet to have children, and I still cried. I just could not imagine. Now, unfortunately, I can. Like MaLynne, I could jog all the way to Texas and back, but my son can’t and never could. Like MaLynne, I was left wondering WHY my son Alex had to die, it’s not supposed to happen this way!!! I wish I could understand as well, but somehow I know I will someday. Here’s the transcript of the dialogue in the scene, andRead More →

Have you ever had a Deja-vu? A feeling of something being so incredibly familiar that should not be at all since you never saw it before? That is Florence for me. Firenze. Even though I never once thought about it, it was the first time in my life where I started wondering about reincarnation. Not sure I believed it, but I did not know what else to think. A few years later I got the same exact feeling about Boston. Even though I’ve never been to Boston, anytime I see a postcard or a picture of Boston and the name of the city is not mentioned, I *KNOW* it’s Boston. There is no ‘wondering’ or questioning, I just know, and I am certain of it. How the heck is this possible? So… if reincarnation is a possibility, would it explain why the English language came so easy to me, as ifRead More →

In Honor of Pregnancy and Infant Loss Remembrance Day I took two beautiful images of angels and put two of my favorite poems on them. I hope you like them, I am posting these below. Original size is much bigger, simply click on the image itself to see original size. Feel free to take them and use them as you wish. God Bless,           Post Views: 3,149Read More →

I don’t know if it’s because Nicky is getting older, EB is getting restless, I am getting older or what is the culprit, but I feel as if lately my fuse has shortened quite a bit. Of course it might also have to do with the election and my unrelenting disgust at all the lies being told by one Pinocchio who flip flops every two minutes depending on who is listening. At least I can look forward to that being over in a month. All I know is that I had to stop drinking wine, or my occasional bottle of Vodka because I felt I could not cope changing my son’s bandages without it. Only now I feel like I am going to explode. What am I going to do? I bought some sugar free lemonade stuff that ‘tastes’ like Margaritas, Appletini and others, without the buzz. So far IRead More →

Hello everyone, just a quick notice! The Kindle editions of BOTH Living with Epidermolysis Bullosa and Special Mommy Chronicles are now available for the NEW low price of $2.99! Click the covers below to be taken to their respective page at amazon.com      If you don’t have a kindle, the APPS are FREE for all platforms, including PC & MACs! Get it HERE!! Thank you SO MUCH!! Post Views: 513Read More →