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!
There is an unfortunate and long history in this country of blaming the poor and the sick for their station in life. Expecting those in poverty or who are chronically ill to “pull themselves up by the bootstraps,” either forgetting or not understanding that many have no boots, it’s not only judgemental about people in situations they know nothing about, but is simply wrong.
Some moments in our life teach us how to be, some teach us how not to be.
This moment in my life will strengthen my resolve to be even MORE loving, MORE understanding, LESS fearful, LESS judgemental. That may not stop any bombing anywhere or the hate and ugliness around me, bit it can improve MY daily life considerably.
This message is so simple, yet it gets forgotten. The people living with the condition are the experts.
Bottled up feelings can lead to mental and physical illness.
The reality is that our family has been deeply impacted by EB. While it’s true that at times it’s not a big deal and we can pass for a somewhat normal family, most often the challenges are significant.