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.
December 2001 – We spent the holidays in Italy with my family mostly because flying after 9/11 was absurdly cheap, but I was aching to see my mom, who spent the 3 previous months in a hospital following a scary infection that almost took her life. Nicky had a blast...
I am not sure I mentioned lately how much I absolutely love and adore my husband. He actually has a reminder on his phone to “comfort me” at this time of year. And he does. His strong hugs are so helpful to me I am not sure he knows how...
The contradiction of it all is that parents of special need children find their strength not truly in themselves, but through their love for their child. If this election cycle has taught me anything is how to raise my standards. I see people go so low it’s disgraceful. If any...
Follow my blog with Bloglovin Rare Disease Day in February 28th this year! Nicky was featured on the Global Genes website back in 2014. As always, we are very open to share our story to gain awareness about Epidermolysis Bullosa. I can’t speak for other parents of kids with EB,...
What I am watching I know I am extremely late to the party, but by the time I heard about how fabulous this show was it was too late to start watching from the beginning. Looking for something to watch right after Christmas after Outlander ended I saw that Downton...
It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a...
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!!! Post Views: 2,832
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. 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...
