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.
It’s been a while since I updated everyone on Nicky’s health. So, here I go. Because of the COVID-19 all kinds of appointments were cancelled, but Nicky does have an iron/blood infusion in early July and an esophageal dilatation on August 24th, so he does have some stuff happening soon....
New episode of Butterfly Talk ready to view! In this episode I talk about coping strategies for Special Need Families and also for those stuck at home due to COVID-19.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing...
What I am watching I must admit… I am not watching many “new” shows (to me) lately. I’ve been mostly watching “new” seasons of shows I love, such as Outlander, Call the Midwife, Star Trek Discovery & When Calls the Heart. However, there is always something new that is amazing...
Butterfly Talk is back! I used to have the “Butterfly Talk” podcast a while back, where I mostly interviewed people form the EB community (https://www.blogtalkradio.com/butterflytalk)…This new version is a YouTube show where I will talk mom to mom about different aspects of coping and celebrating our amazing kids. It will...
It is my sincerest hope that now that people are experiencing what I’ve experienced for a couple of decades being “stuck at home” with my son, they will no longer say or imply insensitive things to me such as “you’re so lucky”, or believe is a “luxury” or “must be...
Here is part 1 of quotes from my book “Butterfly Child: A Mother’s Journey“. Love & Light, Post Views: 1,455
RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all...
March 2017 – This is still one of my favorite pictures ever! Kaley Cuoco on the set of Big Bang Theory hugging my Nicky. She’s a champion for EB Awareness and is amazing! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 2,369
Haven’t written in a while. 3 months to be exact. This new year started and it knocked me out cold. At first it was Nicky’s wounds. They were BAD. The word “bad” doesn’t even give it justice, they were ATROCIOUS! So, I spent a great deal of time researching, googling,...
Healing Nicky’s Wounds that he gets from his diagnosis has always been my top priority. Preventing them to begin with was always #2. I must admit that when Nicky was little, it was “fairly” easy to keep his wounds healed and his skin intact compared to now. I even have...
What I am watching When they announced “The Handmaid’s Tale” on Hulu a few years ago, I wasn’t going to watch it. I had watched the movie long ago and it pretty much disgusted and troubled me, so I said “No way”. However, with the critical acclaim and the suggestions...
The other day, for the umptheenth time, someone sent me a message telling me that… even though they knew nothing about EB, their “eczema” was healed through foods and supplements etc. I don’t even bother to respond anymore, I just delete it. To compare eczema to EB is preposterous. I...
