I am the mother of 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He died in late 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more. I hope my life and my struggles through grief and special need parenting inspire you to enjoy each moment.
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.
Thank you Marsha! Click Below to see it or purchase it! Prices for the book start at only $2.99!
I realize most people experience daily life without needing to see sick children regularly. This is why we need awareness.
Most people can ignore the fact there are children sick or dying until they watch the news. I cannot. That, unfortunately, is not my world.
Sick children are all around me. They are at the doctor’s offices where we spend a great deal of our time. They are across the hall in the hospital when we are there for treatments, surgeries, and appointments. They are in waiting rooms and in the line at the pharmacy.
Nicky, as for most with rare conditions, is fully aware he’s different and instead of pretending he’s not, he’d rather own it and still be made to feel like he fits in regardless.
It’s so easy to discard a life, a human being, when it’s not your child, when you’re not in his or her life or even know them, is it?
Nicky refuses to be touched by hate, he’s AMAZING. Nicky is the purest soul, he’s the definition of LOVE.