I was watching “The View” this morning and it got me real upset. Megan McCain, who has no children, let alone sick children, can spew out her superior “Pro-Life” views (It’s “Murder”” she screams, over and over again), but what begs the question is WHY her party consistently and persistently doesn’t care about children when they get out of the womb, you know, those that are already here and suffering. I’ve made no secret of the fact that I’ve hadRead More →

What I am watching When season 1 of 13 Reasons Why dropped on Netflix last year I wasn’t interested in watching it at all. Let’s face it, it has been a LONG time since I was in High School, and little by little, year after year, movies or shows that depict teenagers’ lives are less and less relevant nor interesting to me. Then on a talk show one of the actors that portrays a parent of these kids started explainingRead More →

Two years ago Nicky started a clinical trial at Stanford with a cream called “Zorblisa” that helped his wounds heal quite a bit. This is not a cure, of course, but getting wounds not only healed but healed WELL is always paramount to ensure optimal health. No wounds = no infections and no cancer, which are the deadly complications of RDEB.  For us, preventing wounds to begin with became a quest. While we cannot claim this as a miracle cream orRead More →

This is also an Italian-American dish. Which means, if you go to Italy, you will not find it. I first had this soup at Olive Garden and I loved it so much I searched high and low for a recipe, and I tweaked this enough to make it as close to the original as possible. Sometimes if I am pressed for time or feel lazy I do this in my Instant Pot and it comes pretty good too! Enjoy! —————————————————————-Read More →

When Emanuelle McIntosh  asked me to be the first of Inspirational stories to share on her YouTube channel I couldn’t say YES fast enough. Nicky was on board even before I asked him if it was OK that I said yes! Nicky and I are of one mind, and when we’re not he’s sure to tell me, LOL. My husband sometimes makes fun of us, as I know what Nicky needs before he even says what he needs. He’s a partRead More →

September 1997 Nicky was starting to crawl at 10 months old and it was worrisome. His problems with his throat had become evident, as he would not swallow his saliva, so the front of his shirt was always wet. His hands (which I had no idea they could web) were starting to look pretty red and they would wound often. But this kitty that we had was amazing with him. She would let Nicky sit on him, pull his tailRead More →

“I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t.” ~Sohana Collins (https://www.cure-eb.org/) This sweet and heartbreaking quote from a girl with EB touched me more than words can say. After I retweeted it, I asked Nicky if that’s how he felt too, assuming he would say something along the lines of “obviously”, but he said “No”. “No? What?” I was a little shocked to beRead More →

I decided long ago to enjoy life for what it is, not for what I’d like it to be. People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it. With Nicky, we’re not dealing with a fixable problem, one that we have the hope of treating and moving on. This is our life, 24/7 and for the foreseeable future unless a cureRead More →