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 many of you know, I don’t post photos of Nicky’s wounds on Facebook because they’ve been deleted many times because people “report’ them. I’ve been blocked and my account has even been suspended by my intent to simply show what EB is. People are disturbing and can be quite...
I feel the need to vent this morning, so thank you for letting me do that! OK, here goes. A few months ago I posted a blog on the EB Info World website about the crazy notion that Every EB patient is different. I was inspired to write that blog...
I must admit, it’s not easy for me to post photos of Nicky’s wounds. When I do, I put them here on my blog so there is no chance of them getting deleted by some jerk who thinks I am exploiting my child. When this happens, and I was called...
I just started listening to an audio-book today by Rhonda Byrne called ‘The Power’ and it’s truly helping me start the New Year in a more loving note. Truly, the more I live the more I realize the power of Love is life changing, but I never realized how much. Thinking...
Merry Christmas everyone! As my way of paying it forward and my gift to all of you, I am offering my book ‘Losing Alex’ for the kindle for FREE until Christmas day! Click here to go to Amazon… (a new window will open) or click on the cover of the book...
Good Morning to all my friends. I feel a little chatty this morning, so please indulge me! One of the most interesting assumptions people have about me because I live in the Southwest part of the United States with my name spelled with a ‘i’ instead of the English-ized version...
One of the most frustrating parts of having a child with EB is that I often felt as if I was abandoned. Not only abandoned because I had nobody to help me with his extreme needs, but abandoned by society in general. So much is available for families that have...
One particularly amusing thing about being able to call two countries my ‘home’ (Italy & the US) is that at times I don’t feel neither is, that I am this weird mutant, where I don’t belong in either, yet I feel both are my homes. How can that be? I...
I wanted to take a moment to thank everyone that left very sweet comments on my Caringbridge post (dated November 2013). The guestbook does not give me an option to reply, so, to all that did leave me sweet messages, thank you. In time of need I know I have...
Yesterday, being Veteran’s Day, I reflected. I thanked my husband for his service, thought of my sweet ex-FIL, who suffered greatly in Vietnam, thought of my grandfather who fought in both World Wars (that’s him on the right in this photo in 1918, at the end of WW1) and everyone...
As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to...
In my quest to collect quotes for my Facebook Page where I share them (I’ve always been a quote freak!), I’ve come through a lot of wisdoms over the years that make me stop and think for a second. None come closer to my heart than those that urge you to...
I have to be honest. I am tired. I read an article this morning from Matt Walsh defending Stay-at-home-moms and it hit home so hard it really made me think. We do get the short end of the stick. We do the most important work, we take care of the...
September 20th was the magical day that the book ‘Courage Under Wraps’ by Jodi Champagne was displayed at a Gallery in Hollywood along with many other photographers’ works. This is the Photographic Documentary Book about the life of my son with Epidermolysis Bullosa. Here are some photos from the event....
