New episode of Butterfly Talk ready to view! In this episode I talk about the bandages and miscellaneous products that we use to take care of Nicky’s wounds and well-being.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 111Read More →

I came across this quote a while back and it kinda just “hit me” in the gut. “The most destructive thing I’ve ever done is believe someone else’s opinion of me” I’ve been doing a lot of thinking about this quote… How many times, in our lives, people put us down and bully us without knowing the full story? How many times have we been compared to others and we are told we do not “measure up” to them? As if living is a competition on who is more educated, more beautiful, or who makes more money? I’ve learned along the way that the most wonderful people I’ve ever met are not the most successful, nor the most educated. The most wonderful people are those who are caring and compassionate, who have empathy and know that a kind word goes a long way. You know, those people that know whenRead More →

What I am watching I have to be honest, the last thing I wanted to do this summer was sitting in front of the TV and watch endless shows. I should be in Italy right now visiting my family. I was supposed to take my kids camping, and I wanted to take a stroll by the beach. But… COVID-19 ruined everything for everyone, so we are stuck at home, hoping, praying, that my son Nicky and my husband won’t get sick. So, here we are. Lately I’ve been watching all kinds of shows trying to find something good… I saw a several shows that I can’t really suggest, they were just weird or bizarre. Then FINALLY I came across this one… ALLELUJA!!! Something really good! I can talk endlessly about The Affair! SO MUCH resonated with me. Surprisingly, I’ve never heard of this show until last fall when Showtime wasRead More →

Just recently the EB community lost two RDEB teenage souls and my heart broke. This is the same exact diagnose as my son’s, so when this happens I always wonder when will that happen for him. Tomorrow? Next year? 5? 10? The future is scary. It’s unthinkable. It’s something I cannot think about. The only thing I can do is hug him, kiss him, love him. To me, however, losing him, would be losing child #2. Child #2 that I would have to bury, and that’s probably why over the years I’ve become such a Mama Bear, someone who will fight tooth and nail over his care and over people who relentlessly judge me about every little tiny thing I do to care for him. Forgive me for wanting to delay burying my second son as long as humanly possible! If I am doing something in particular that perhaps otherRead More →

New episode of Butterfly Talk ready to view! In this episode I talk about depression. Special Needs moms cope with long-time depression. This ongoing type of depression is very different from other forms of depression…Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 197Read More →

November 2014 – What an awesome memory!! We met Nick Vujicic in Ventura during one of his events and it was amazing. Nick had invited Nicky after he saw him on a news piece. What an inspiration! More of Nicky’s life in the book: http://www.butterflychildamothersjourney.com/ Post Views: 233Read More →

It’s been a while since I updated everyone on Nicky’s health. So, here I go. Because of the COVID-19 all kinds of appointments were cancelled, but Nicky does have an iron/blood infusion in early July and an esophageal dilatation on August 24th, so he does have some stuff happening soon. We did have a couple of “virtual” appointments and a couple of “phone” appointments which were interesting to say the least! Nicky even attended a few sessions of Camp Wonder online since Camp itself was cancelled. Boo. Nicky missed camp last year because he was in the hospital, so that made it two years in a row that he missed Camp. He was not happy about it, but everything seems to be cancelled this year. The major issue he has right now is indeed throat problems, he cannot swallow his own saliva at times and it’s really hard to goRead More →