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.
August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint...
I am often asked how I moved to the US, what happened that made me leave my country, if I fled, escaped or what. The truth is not so clear cut, not exactly that simple. I didn’t wake up one day and decided: “I am moving!”. It was a succession...
In this world full of alternative facts, here’s some real facts about me. I will do one about Nicky too sometime!!! 🙂 1. I lived in 2 countries and in 4 different states – Italy & USA -New Mexico, Texas, Arizona and California. I grew up in Italy, and my...
I have a new giveaway!!!! Enter to win my book “Butterfly Child”!!!! Simply click on this link to be entered into the drawing… (US Only) https://giveaway.amazon.com/p/6879cf350fff1481 Good Luck!!!
Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does. Â Strength has everything to do with allowing ourselves to feel whatever needs...
A lot of times, when seeing articles posted about children with EB, we see these sorts of titles: Girl can’t hug parents because rare skin condition causes her to blister when touched Video: Mom Can’t Hug Baby Little Boy Blisters When He’s Touched Due to Rare Disorder Adorable five-year-old girl...
Every now and again I get an email or a message from people I know and even from strangers telling me they’ve followed Nicky for X years and follow this blog and offer me kind and compassionate words and I do not know why, but I am always surprised. Shocked...
Halloween 1999 – Nicky was almost 3 years old when I took him to the mall to trick-or treat. I always looked for soft costumes and this one of “Po” of the Teletubbies totally fit the bill! At the time we lived in Arizona. How cute is my little one? More...
As I was changing Nicky’s bandages last night I noticed how much better his wound mass is compared to just a few years ago. The cream (from the Stanford trial) and other things I’ve been adding to the various previous creams I used for the past few years have...
Even with all this evidence on how much my wrapping is working, they are STILL telling me I wrap Nicky too much. I swear, it will never end. Isn’t prevention key? My job is to keep my head above water for Nicky’s sake, which can be an unsurmountable task at...
There was a time in my life where everything offended me. The worse of those times I recounted in my book, Butterfly Child. It was during Nicky’s second Christmas in 1997 and I was at my lowest low, the lowest point in my life. The following is an excerpt from...
Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe,...
August 1998 – When we spent several months in Italy in 1998 so that my parents could help me take care of Nicky, I had the opportunity to have my little guy spend quality time with my Nonna Rina, which is Nicky’s great-grandma (BisNonna). We would go visit her often...
As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now...
