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.
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: 3,393
This column that I wrote nearly 10 years ago is worth reposting. I taught my son to laugh at the silliest things from the time he was little. Yes, his life is horribly painful, but this kid can laugh!!! Enjoy! By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from...
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...
Since this is “EB Awareness Week” (#EBawarenessweek) I wanted to write a short blog about what is like to have a child with Recessive Dystrophic Epidermolysis Bullosa. For me, it means having to inspect every inch of my son’s skin every night. It means taking a sterile needle to lance...
For EB Awareness week this year I want to take a moment and give everyone a rundown of the horrible side effect of RDEB and the mittening of the hands and how I found out about it and how we dealt with it. Of course hindsight is 20/20 as with...
I am slowly adding all the episodes of “Butterfly Talk” on YouTube as time allows for your listening and viewing pleasure. Butterfly Talk is a monthly radio show/podcast I run myself. The episodes not only are available on the Blog Talk Radio website but also on iTunes. Putting them on...
September 2006 – When Connor was little he never left Nicky’s sight. He would sit right next to him at all times. It was so darn cute! Even today if I am looking for Connor, he’s not far from Nicky. Two peas in a pod! More of Nicky’s story in...
This morning I hated being an EB mom. “Hated” is such a mild word to describe it too. Nicky woke up in a lot of pain. He tried to pull something off of him, ripping skin off and causing a wound that was already bad to increase in size and...
If there was one question that I was asked more than any other in regards to my son’s condition is why he and others with RDEB look so pale and why they don’t seem to age per se, they always look very young. Even when Nicky was interviewed by FOX11...
September 2005 – Without question, Nicky has always been incredibly fond of his little brother. Connor here, at 2, was still small enough for him to be able to hold him. In return, Connor was always very aware of how gentle he had to be with his big brother. As...
A few weeks ago I came across this show about a big discovery in South Africa of a humanoid previously unknown and I was completely immersed in it, finding their unearthing absolutely fascinating. One of the researchers then stated that the reason why he was interested in this finding is the...
September 2004 – Nicky always found the most unusual, but surely comfortable positions to sleep! Here he was almost 8 years old. 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: 2,068
There is a TV show that I am obsessed about… Project Runway. I sit there with my glass of wine and watch in awe. I like it not because I am in any way, shape or form a “Fashionista” (although I do like nice clothes), but because the designers amaze...
After I lost Alex at full term 20 years ago, the one thing I could not do is watch anything “dramatic” on TV or the movies. “ER” was popular back then and I avoided it like the plague. 20 years later, Medical Dramas are still hard for me to watch....
