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.
Ian Ziering has my full cheering section support in my house as he plays to raise money for the EBMRF on the Celebrity Apprentice, premiering tonight on NBC. The EBMRF stands for “Epidermolysis Bullosa Medical Research Foundation” (website here: http://www.ebkids.org). The EBMRF and their fundraising efforts are behind the research...
A quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important....
On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death...
From one crazy overwhelmed mommy to another, I need your help! The best holiday gift you can give me, in anticipation of my release of the book Butterfly Child – A Mother’s Journey (due out in early 2015) is a review of my book “Losing Alex”, which is a FREE...
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...
Somehow Thanksgiving gives me a different vibe since I found out early in 2012 that my husband’s family tree from his mom’s paternal side dates back to the Mayflower itself. I thought it was immensely cool to tell my son Connor that his 11th great-grandfather, Richard Warren, was one of...
Yesterday was a particularly tough day for Nicky, and I don’t know if I am getting old or what, but I am still tired from it. We woke up at 5am, left by 6am, drove into Los Angeles during the morning rush hour (never a good thing) which made our...
First of all, I must apologize for not posting more often. I love to write and writing is my therapy, and I do have a lot to talk about. Lately however, I am knee deep and almost done writing my book Butterfly Child and it’s been quite emotional to say...
Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog. Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain....
I know it seems as if maybe I talk about Alex too much, after all he was in my life only 9 months, all spent inside of me, but how precious is that thought anyway? Alex’s entire life was spent underneath my heart. I felt every kick, cherished every movement....
I constantly have people asking me ‘how I do it’ or how Nicky handles all his pain. I think over the years we have learned our unique way of coping with things. I can only limitedly talk about Nicky and how he deals with EB, I know that even if...
Ten years ago a documentary aired that I am yet to show Nicky and not sure I ever will. I wasn’t even able to watch the whole thing in one sitting, I kept crying buckets and it took me three sittings to finish it. I guess you could say it hit...
This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself! Last year, right around this time,...
I took my son Connor to swimming practice today and while I watched him swim I was listening to my iPod. I have a playlist of songs on it, I call it my ‘fave’, it has over 2,000 songs in it and it plays randomly. When ‘I Believe’ by Diamond...
