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.
RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all...
March 2017 – This is still one of my favorite pictures ever! Kaley Cuoco on the set of Big Bang Theory hugging my Nicky. She’s a champion for EB Awareness and is amazing! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/
Haven’t written in a while. 3 months to be exact. This new year started and it knocked me out cold. At first it was Nicky’s wounds. They were BAD. The word “bad” doesn’t even give it justice, they were ATROCIOUS! So, I spent a great deal of time researching, googling,...
Healing Nicky’s Wounds that he gets from his diagnosis has always been my top priority. Preventing them to begin with was always #2. I must admit that when Nicky was little, it was “fairly” easy to keep his wounds healed and his skin intact compared to now. I even have...
What I am watching When they announced “The Handmaid’s Tale” on Hulu a few years ago, I wasn’t going to watch it. I had watched the movie long ago and it pretty much disgusted and troubled me, so I said “No way”. However, with the critical acclaim and the suggestions...
The other day, for the umptheenth time, someone sent me a message telling me that… even though they knew nothing about EB, their “eczema” was healed through foods and supplements etc. I don’t even bother to respond anymore, I just delete it. To compare eczema to EB is preposterous. I...
Halloween 2002! Nicky loved Barney! Here he was almost 6 years old More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/
I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be...
Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo – who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian...
What I am watching I’ve always wanted to watch “Le Miserables”, but that whole musical adaptation thing… I just could not watch it. I tried, trust me, but I could not do it. I guess because I grew up with musicals being ‘happy and fun’ stories, a musical of a...
I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go...
I was inspired to record a video about how my coping techniques are for Depression as a Special Need Mom. Depression is NOT a bad thing, it’s natural. We wouldn’t be humans if we didn’t feel sad or hurt over our children’s suffering. But we have to rise above it...
