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!
It’s sad how people only become instinctively concerned when it’s one of their own. We need to become a more empathetic and compassionate society.Before Nicky was born I was an absolute wimp, who could not watch my own blood being drawn. Amazing what we learn to do out of love for our children.Every day since he was born I have had to evaluate the way I can help him without hurting him too much. I have had to balance the risks and benefits of everything I do to him. I have tried to make him part of every decision as early in his life as possible, giving him as much information as I could for whatever age he was in.I give him the information and I let him make the decision. This has nothing to do with him not being brave enough to do certain trials or not, it’s him making decisions about his life only HE can make.Once an area gets wounded, it’s much easier to wound again, the more it gets wounded, the more fragile it becomes.Let me make this as clear as possible: all the good choices in the world would not have prevented my son’s condition. He should not have to prove his worth to you. He should not have to prove is right to exist to you.