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.
March 2014 – When Nicky was 4 years old I decided that perhaps playing video games would be beneficial to him and something he could do without getting hurt. I bought a used Super Nintendo and we started playing Mario Kart every day. He loved it. I wanted him to...
I was reading the comments left underneath the video of Nicky and I noticed a lot of people are asking the same questions over and over again. But… just not to me, to the “wind”, so to speak. So, I want everyone to know it’s ok to ask me or...
It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does. I was contacted by Barcroft TV...
Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet....
Every three months I have an appointment with my psychiatrist and I strangely look forward to it. He is not a therapist per se, we do talk about my mental struggles, but I do not spend an hour blabbing about my problems. I say “strangely” because before my appointment I...
August 1997 – Nicky and I on our way to our anniversary dinner. ~ Excerpt from the Book “Butterfly Child” “The Physical Therapist became sort of a confidant; after all, I saw her twice a week and I felt she was one of the few people that might have answers...
“I care too much, and it’s OK. I will not let anyone tell me I am wrong to love, to have empathy or compassion. Period.” That is what I posted on Facebook this morning with this image on the right from this great Minister John Pavlovitz which I’ve come to greatly...
I was reading an excerpt of the book by Taraji P. Henson (Around the Way Girl: A Memoir) about her life as a single mom and it hit me hard. Harder than I imagined. I read and re-read the few sentences and I felt as if I wrote them myself....
Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt that I know what I am doing. I’m maxed out with advice. And...
The other day I came across a post about “9 things Italians living in the US will miss“, and while I concurred with everything posted, the one that spoke to me most was the one about family living close by. Oh, how I miss that! But it goes further than...
The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the attempt of healing the area, the opposite happened. It’s now worse than it’s ever been. The whole area is a BIG open wound. Ugh. It’s always a shock to me that I...
August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays...
From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took...
As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final....
