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: 454Read 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 →

What I am watching I was looking for something to binge on Netflix last month and after watching the first 15 minutes of 3 different shows, I landed on Alias Grace and it immediately grabbed me. Alias Grace takes place in Canada in the 1840s and beyond, and tells the story of Grace Marks, a young, poor Irish immigrant and domestic servant who finds herself accused and convicted of a double murder. The actress that plays the role is riveting,Read More →

Having hope sometimes is a gigantic challenge. A challenge so unsourmantable that it leaves you in tears and gives you sleepless nights. You cry. You scream. You fall asleep in tears. But then you wake up, dust yourself off and move forward, one day at a time. One hour at a time. Focusing on the present becomes imperative. One of the reasons why I have a hard time being part of support groups in general is because there are oftenRead More →

Because I am Italian, I’m always asked to give people recipes to make this and that. The truth is that aside the staples, I only learned to cook a variety of foods just recently, which includes a lot of Italian dishes and quite a bit of desserts. The reason why only recently? Because I worked too much beforehand. My ex-husband and I had separate shifts and hardly ever ate together. When I got remarried and I was my son’s fullRead More →