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.
As I was changing Nicky’s bandages last night I noticed how much better his wound mass is compared to just a few years ago. The cream (from the Stanford trial) and other things I’ve been adding to the various previous creams I used for the past few years have...
Even with all this evidence on how much my wrapping is working, they are STILL telling me I wrap Nicky too much. I swear, it will never end. Isn’t prevention key? My job is to keep my head above water for Nicky’s sake, which can be an unsurmountable task at...
There was a time in my life where everything offended me. The worse of those times I recounted in my book, Butterfly Child. It was during Nicky’s second Christmas in 1997 and I was at my lowest low, the lowest point in my life. The following is an excerpt from...
Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe,...
August 1998 – When we spent several months in Italy in 1998 so that my parents could help me take care of Nicky, I had the opportunity to have my little guy spend quality time with my Nonna Rina, which is Nicky’s great-grandma (BisNonna). We would go visit her often...
As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now...
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....
