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 EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is,...
If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to...
For the past few years now I’ve been mixings things up to put on Nicky’s wounds and I do believe I have a good mixture of ingredients now that has helped his wounds in ways no other single item has before. It all got started a couple of years ago...
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 2003 – Nicky wasn’t quite 7 years old when his little brother Connor was born. Nicky would spend a lot of time just staring at him in awe! He was so happy when he was born that at the hospital he told me he was so happy he now...
Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”. He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would...
If there is something that is prevalent in our society, is the saying to those that suffer: “Hang in there, things will get better”, which is fine and dandy if it’s said to someone whose condition will, indeed, get better. When you have a child with a “terminal” condition, however,...
As I posted yesterday, wound pics generate a barrage of negative comments on Facebook, they usually end up being reported and deleted, which is why I don’t post them there anymore. It’s just not worth getting banned over them when I can just post them here. This is EB-more specifically,...
This is part 6 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...
It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really “bad”, I need to brace myself. This is what I braced myself for a couple of weeks ago… After I took off the bandages, big areas of skin just...
I updated my Caringbridge Blog today (here’s the link–> http://www.caringbridge.org/visit/nickyz/journal/view/id/554ba814f02065dc3614f506) and I also posted a photo on my Butterfly Child Book Facebook Page and I talk about the pain and suffering that Nicky endures. It’s not easy. EB sucks. It’s been two years now since I had to start giving Nicky...
I guess you can call this my first VLOG. I wanted to do this with Nicky but he’s not feeling well, so I just went on and did it myself. I sincerely hope it helps someone! Love & Light, Post Views: 1,785
I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap,...
I will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then...
