What I am watching I have been a Chicago Fire (NBC) fan from the very beginning and the show never disappoints. I am not sure what exactly I find compelling, but it does remind me of the old 1970s shows like Emergency or even CHiPs, which I grew up on. What drew me in initially was the fact that Jesse Spencer from “House” was going to be starring in it, but after watching the very first few episodes I realized thatRead More →

It seems like more than ever, in our connected society, everyone is hell bent in convincing everybody else that “their” way of thinking is better. Their way of doing things is better. Their beliefs are more important or more true than what another may hold. This feels almost as a confidence exercise, a way to elevate themselves and claim superiority and the more people they “recruit” to their way of thinking or doing, the better. Using hate to achieve thisRead More →

This is an Italian-American dish. Which means, if you go to Italy, you will not find it. No restaurant will have it. However, plenty of “Italian” restaurants in the United States, most actually, will serve this dish. My aunt had an Italian Restaurant in New Mexico and that’s when I first ate it. Interestingly enough, my mom used to make a similar dish, just without the sauce and the cheese on top and serve it with a salad. My husbandRead More →

Worry seems to be a mantra for EB moms. We worry. Our heart sinks with every new passing. Myself, I try to cherish every day and not think about the future, it is unknown after all. Thinking positive is hard, but I do try. I keep telling myself: Nicky will make it, Nicky will make it… he will live to see a treatment that will improve his life drastically. It may be false hope, but the truth is, my heartRead More →

September 2007 Nicky attended an EBMRF (ebkids.org) fundraiser at the Pier in Santa Monica and got to meet Joely Fisher, half-sister of Carrie Fisher. She was adorable and so sweet to him. Just to know she knows what EB is makes my heart swell! More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 477Read More →

I know I talk a lot about my son, but today I want to address the #metoo movement as I feel it’s been long time coming. Let me go on record to say I’ve never been sexually assaulted. However, this does not mean I cannot say #metoo, as I have my own stories about being disrespected, nor have I been immune to forceful advances and harassment. All in all I know I’ve been lucky, the fact that I was veryRead More →

Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time. If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make him smile. I am done being told what to believe, what to be afraid of, who to trust, what to think and who to hate. Why is RDEB medically fragile? Mostly because of the open wounds and the consequencesRead More →

We hurt to depths that boggle the mind, but we know joy that others will never understand. At the beginning of our journey, we may not think we can do this, we may think we’re not good enough, not patient enough, not selfless enough, but we become the parent our child needs. Friends and family disappear, but those who choose to stay become part of our new world, and they are the most amazing, caring people we will ever know.Read More →