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.
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...
December 2001 – We spent the holidays in Italy with my family mostly because flying after 9/11 was absurdly cheap, but I was aching to see my mom, who spent the 3 previous months in a hospital following a scary infection that almost took her life. Nicky had a blast...
I am not sure I mentioned lately how much I absolutely love and adore my husband. He actually has a reminder on his phone to “comfort me” at this time of year. And he does. His strong hugs are so helpful to me I am not sure he knows how...
The contradiction of it all is that parents of special need children find their strength not truly in themselves, but through their love for their child. If this election cycle has taught me anything is how to raise my standards. I see people go so low it’s disgraceful. If any...
Follow my blog with Bloglovin Rare Disease Day in February 28th this year! Nicky was featured on the Global Genes website back in 2014. As always, we are very open to share our story to gain awareness about Epidermolysis Bullosa. I can’t speak for other parents of kids with EB,...
What I am watching I know I am extremely late to the party, but by the time I heard about how fabulous this show was it was too late to start watching from the beginning. Looking for something to watch right after Christmas after Outlander ended I saw that Downton...
It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a...
