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.
I pride myself in being even-keeled. Very little truly upsets me anymore. Looking at the bright side? That’s me. I let a LOT of things go. Ask my husband! He is often more upset about stuff than I am, even when the problem is mine. I tell him to chillax....
For many years to come we survived on donated bandages or, worse, washed and re-used bandages. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes. The death of my child changed me in ways I cannot ever explain nor express the monumental...
Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism,...
January 2008 – Nicky showing his flexibility! This is one of the few things he can do with his body. He may not be able to walk or move much, so it’s always fun for me to see this fun/crazy side of him. In this picture Nicky was 12 and...
Nicky was born on November 25th, 1996 and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). EB is a rare genetic skin disorder, his body does not produce a vital protein that glues the layers of his skin together, hence the slightest friction causes painful blisters and wounds. His body...
This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in Germany that was treated with skin grafts from Dr. De Luca in Italy is making the rounds around the world. (Here’s the link for the CNN article). The original research article that was published on...
Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. I don’t intend to host a pity...
Several years ago I happened upon a reply to a post about a child with severe RDEB in a special need parenting forum and one of the commenters stated that they should just “kill him”. That comment got a lot of likes and it got me very, VERY, VERY upset....
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...
