A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
As some of you may know, I’ve been a rather active advocate for EB, or, rather, Epidermolysis Bullosa, my son’s skin disorder, since he was born. I am in the process of writing my book, Butterfly Child, which is the story of my son’s life with EB and I am...
Hello friends, family and everyone interested in seeing how Nicky’s left hand surgery went! I finally have time to do this blog post… Here Goes! This photo below is a photo of his hand BEFORE surgery. It shows quite clearly his four fingers and the ‘pinky’ is all, as we say,...
Well, it’s official!! “Courage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure. While the...
There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose...
I just wanted to make a quick post about Nicky’s left hand and show a couple of pictures. This is Nicky’s left hand. This particular photo shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. The index,...
OK, so this blog is a lot longer than I intended to… but how do you sum up the time of your life? This is a trip we’ll never forget. Thanks to everyone that made it possible! As many may imagine, Nicky’s life is full of pain. Medications to alleviate...
I had a great friend yesterday ask me if I could write a blog about how people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do?...
A few years ago I was presented with a situation that was hard to digest. As I describe in detail in my book Losing Alex, a group of what I can only describe as ‘evil people’ had targeted me big time. Since my website showed me the referring links (basically...
I was deep into reading a wonderful book wrote by a local mother whose daughter had brain cancer and something she said hit me like a ton of bricks. And not in a good way. Without admittedly doing any research on her own, or talking with other parents in similar...
Last night I came across an old blog of mine circa 2001, and the words I spoke on that blog are as true today as they were back then. I am not sure if I am sad that my attitude has not changed, or happy to know I was right...
My 9 year old kind of shocked me today, but in a good way. Last Friday he attended my College Graduation and he waited until today, when I went to help out at his ‘Unity Games’ to ask me this: “Now that you don’t have to go to school anymore,...
When working at Target several years ago as a cashier, a couple came in to buy a large pack of diapers and as they were checking out they told me, in a sarcastic and bothered kind of way, how they could not believe they were still buying diapers for their...
I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If...
