August 2008 – Nicky at the beach. It was not exactly a fun day for him. After a while we had to make sure he was under a big umbrella with a wet towel around his neck. At one point he inched closer and closer to the water, so that every now and again the tide would soak him through. He loved that, but the bandage change afterwards, complete with sand in his wounds, was not a particularly nice one. He never wanted to go again. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 915Read More →

June 2007, Nicky’s graduation from 5th grade with his AIDE Mrs. Drossel (behind him) and his teacher Ms. Hernandez. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 858Read More →

It’s EB Awareness week and I wanted something to illustrate EB without being “graphic”, so I decided to read an excerpt from my book, “Butterfly Child“. This is the beginning of Chapter 4, when we took Nicky home from the hospital. Here I describe the first month of having Nicky home and our challenges and learning curve. It’s truly quite descriptive. If you wanted anyone to learn about what it’s like to have an EB baby, this is what you need to share!!! Please note, I am not a “voice artist” and I do have an accent, but these are my words I am reading, so I did the best I could. Thank you for listening, and please take a peek at the EBMRF (ebkids.org) and Debra (debra.org) websites to learn more about EB. Love & Light ~Silvia Post Views: 762Read More →

I know everyone likes Amazon, but if you knew how big of a cut they get, you’d be surprised! Hence, unless you’re downloading the eBooks for the Kindle, the best deals can be found directly from the publisher. So, here’s the scoop on the best deals for my books! eBooks Kindle is the way to go for my eBooks! Living with Epidermolysis Bullosa & Special Mommy Chronicles are only $2.99!! Losing Alex is also $2.99 and for Prime Members you can borrow it for FREE! This is because it’s an Amazon exclusive! I also like to give this title away from time to time. Thousands of people have downloaded it for free since its release. I like to pay it forward and I know this is the one that most women that lost children can relate to. Butterfly Child-what can I say. This is my puppy. It took me 20 yearsRead More →

I just updated Nicky’s Caringbridge Blog this morning…. Thank you for your support and thank you for allowing me to vent. http://www.caringbridge.org/visit/nickyz MORE NEWS! The Audiobook of Losing Alex​ will be available shortly. It’s so exciting for me! Also, I was able to lower the cost of my book Butterfly Child – A Mother’s Journey​ to $14.97 if purchased through the publisher. I can’t do nothing about the price charged by Amazon or B&N though, sorry. That is totally out of my control. That’s how much money they are making off my book, eghads! I am working on a “hard cover” version of the book as well, mostly for myself, but I will have it available for anyone that might like that. Love & Light, Post Views: 1,140Read More →

My new giveaway for my book “Butterfly Child” is now live! Enter for a chance to one 1 of 2 Autographed copies! Autographed by both Nicky and I nonetheless!! Here’s the link! –> https://www.goodreads.com/giveaway/show/150684-butterfly-child Thank you so much for your support… and if you have already a copy, please consider leaving a review! Much love <3 Post Views: 787Read More →

This is part 8 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se. This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks. November 2001 – Nicky was always my little ham when he was little. He started playing videogames when he was 4.5 years old and never stopped. If there was one thing that I could say that is keeping him alive at this point is his love of playing. I feel a little down this AM, so please accept my apologies. Nicky’s ability to “move”Read More →