February 4, 2021
EB parents
October 28, 2020
10 Things this EB Mom Wants You to Know…
It’s EB Awareness week! Every year from October 25 to 31st (the last week of October) is reserved to help raise awareness for Epidermolysis Bullosa, my son’s rare skin disorder. Here’s 10 things this EB mom wants you to know… 1. Yes, it might looks like we have it all...
July 8, 2020
Butterfly Talk Episode 3 – Depression Chat
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...
May 23, 2020
Butterfly Talk Episode 2 – Coping Techniques
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...
April 24, 2020
Yes, RDEB Gets Worse With Age.
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...
December 12, 2019
Life with EB
I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be...
October 27, 2016
Epidermolysis Bullosa is not a Life Choice. It’s Real & it’s Hard.
Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all,...
September 30, 2016
A Work In Progress
Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water,...
October 11, 2012
And I thought *I* was going crazy!
I don’t know if it’s because Nicky is getting older, EB is getting restless, I am getting older or what is the culprit, but I feel as if lately my fuse has shortened quite a bit. Of course it might also have to do with the election and my unrelenting...