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.
This is the first of what will eventually be many posts over the next several months or longer of quotes pulled right out of this blog of mine. Feel free to save them and share! To save the bigger version of the image, click on the image first to load it,...
For many years now I often had people that care about Nicky telling me about or asking me why he hasn’t had a Bone Marrow Transplant. While I wrote in the book extensively about Nicky’s decision (because, make no mistake, he is in charge of his body and I’ve told...
For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being...
If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to...
When you can make a Doctor say “Huh?” You have enough paperwork to wallpaper your house. You own more scissors that is either reasonable or anticipated. When you know more than the real doctors do about your child. When you think it’s a good day if you don’t see any...
Since this is “EB Awareness Week” (#EBawarenessweek) I wanted to write a short blog about what is like to have a child with Recessive Dystrophic Epidermolysis Bullosa. For me, it means having to inspect every inch of my son’s skin every night. It means taking a sterile needle to lance...
For EB Awareness week this year I want to take a moment and give everyone a rundown of the horrible side effect of RDEB and the mittening of the hands and how I found out about it and how we dealt with it. Of course hindsight is 20/20 as with...
I am slowly adding all the episodes of “Butterfly Talk” on YouTube as time allows for your listening and viewing pleasure. Butterfly Talk is a monthly radio show/podcast I run myself. The episodes not only are available on the Blog Talk Radio website but also on iTunes. Putting them on...
This morning I hated being an EB mom. “Hated” is such a mild word to describe it too. Nicky woke up in a lot of pain. He tried to pull something off of him, ripping skin off and causing a wound that was already bad to increase in size and...
If there was one question that I was asked more than any other in regards to my son’s condition is why he and others with RDEB look so pale and why they don’t seem to age per se, they always look very young. Even when Nicky was interviewed by FOX11...
September 2003 – Nicky wasn’t quite 7 years old when his little brother Connor was born. Nicky would spend a lot of time just staring at him in awe! He was so happy when he was born that at the hospital he told me he was so happy he now...
Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”. He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would...
If there is something that is prevalent in our society, is the saying to those that suffer: “Hang in there, things will get better”, which is fine and dandy if it’s said to someone whose condition will, indeed, get better. When you have a child with a “terminal” condition, however,...
A few weeks ago I read a comment from someone stating how great the advancements for a cure for EB were coming along and how they were happy to wait. I just bowed my head. Just in the past couple of years so many children with EB, similar to Nicky...
