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.
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...
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...
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...
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...
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...
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...
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...
September 5, 2004 Connor’s first birthday was really fun for Nicky. He laughed and laughed seeing Connor destroy his mini-cake (which we got in purpose, LOL)! After I gave Connor a bath we continued the celebration with present opening. Connor at 1 was a little doll. Nicky just adored him....
Wayne Dyer once said: “How people treat you is their karma; how you react is yours.” I wrote in the book Butterfly Child about me being the proverbial “punching bag” for the EB community when I used to run the various EB groups over a decade ago. In the book...
Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me...
A couple of years ago, in the name of being “supportive” in regards to Nicky (or so he claimed), someone told me “At least he’s not dead”. Apparently this individual had lost two cousins to some condition he did not identify and that was the reason for his statement. When...
What I am watching Just before I left for my trip to Stanford for Nicky’s surgery I finished watching the 2nd and, may I say, glorious, season of Victoria. Because I was enthralled by the Olympics and busy watching Downton Abbey every spare moment, I taped all the episodes that...
One would think that after all these years of dealing with the Insurance, Medical Groups, Doctors, NPs, Referral and Service Personnel and the Medicalese involved, I would no longer have to deal with the insanity and run-around of people telling me completely different things, but I suppose I am no...
