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  • My Family

  • My book

“I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t.” ~Sohana Collins (https://www.cure-eb.org/) This sweet and heartbreaking quote from a girl with EB touched me more than words can say. After I retweeted it, I asked Nicky if that’s how he felt too, assuming he would say something along the lines of “obviously”, but he said “No”. “No? What?” I was a little shocked to beRead More →

I decided long ago to enjoy life for what it is, not for what I’d like it to be. People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it. With Nicky, we’re not dealing with a fixable problem, one that we have the hope of treating and moving on. This is our life, 24/7 and for the foreseeable future unless a cureRead More →

Just a couple of days ago, on Mother’s Day, I received the sweetest card from my son Connor, who is 14 years old. He made me cry. He thanked me for taking such good care of Nicky and for teaching him strength. This is just part of his card: “Through all you have been through, I’m speechless and all I can say is to never EVER give up. Most mothers if they were to go through what you have goneRead More →

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: 381 CommentsRead More →