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.
I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months. For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was...
Just the other day I ran across an article on Redbook magazine asking “Would your friends be there for you in a Health Crisis” that made me stop cold. As I read it, I was nodding. Oh yes, I’ve been there. You see, as I explained, or at least tried...
This past week something happened that caught me by surprise. A new Pope was voted in by the World’s Cardinals and their decision brought me to tears. You see… I am not a hugely religious person. As a matter of fact, the last time I entered a church, was this...
On my blog at the EB Info World website, I posted the 8 things you can do to Help Bereaved Parents, which is something I wrote for the back of the book I wrote about my son called Losing Alex, available now for the Kindle and paperback. On that note,...
This past Sunday, around 6pm, Nicky decided to come sit on the couch where we usually change bandages in front of the TV. I told him that I still had to finish dinner and clean up, but he said he didn’t mind, he wanted his bandages changed BAD. So bad...
I was watching an interview with Meredith Viera yesterday on the Dr. Oz show and she said several things that I could completely resonate with, and the one that I could relate to the most is how she felt everyone’s Life was about “Priorities”. It’s true, isn’t it? Sometimes I...
Ever since that dreadful, beautiful day where I held and lost my son, I felt a strong need to keep his memory alive. This was not an easy task. It was easier at first. People sent beautiful sympathy cards, flowers. Being part of a support group and speaking with other...
My new book is finally out and I could not be prouder! This is truly a labor of love. Alexander Luciano “Alex” was stillborn at full term, on March 1st, 1995 @ 4:29 AM. He actually died the day before he was due, on February 25th, 1995. He weighed 5...
Those that know me, know what a quote freak I am. I draw a lot of inspiration from them and they truly help me in many ways. It all started back in 1993-I was on a flight from New York to Milan, Italy to visit my family and the gal...
Ever since the photographer started taking photos of Nicky for her/our photo-documentary about living with EB, a lot of questions about his health have surfaced-I will try to answer them here to the best of my ability. 1. Is his condition considered ‘lethal’. Nicky was diagnosed at birth with Epidermolysis...
I started taking Nicky to CHLA (Children Hospital Los Angeles) in the summer of 2004 when he was 8, following my attending the EB Patient Conference in Palo Alto, where I met a rather eloquent and “well versed in EB” hematologist who opened my eyes on something Nicky was dealing...
I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you...
