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.
Just recently the EB community lost two RDEB teenage souls and my heart broke. This is the same exact diagnose as my son’s, so when this happens I always wonder when will that happen for him. Tomorrow? Next year? 5? 10? The future is scary. It’s unthinkable. It’s something I...
New episode of Butterfly Talk ready to view! In this episode I talk about depression. Special Needs moms cope with long-time depression. This ongoing type of depression is very different from other forms of depression…Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of...
November 2014 – What an awesome memory!! We met Nick Vujicic in Ventura during one of his events and it was amazing. Nick had invited Nicky after he saw him on a news piece. What an inspiration! More of Nicky’s life in the book: http://www.butterflychildamothersjourney.com/
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,
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/
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,...
