What I am watching I am a huge Trekkie as my friends know. I used to go to Star Trek conventions back in the early 90s! I am also, shall we say, an equal opportunity Trekkie. I like all Trek shows, movies, all the time, unlike my sweet hubby who is only a big fan of the original show. He’s watched the movies with me and a few of the Borg episodes of the Next Generation, but that’s about it.Read More →

Going to the Debra.org PCC is always a treat. The first Conference I attended with Nicky was the one held in Los Angeles in 1999. It seems like forever ago. Nicky was 2.5 years old and by then I had many “online” friends which I had the absolute pleasure to meet in person. Back then, without Facebook or even MySpace, the only way to find someone who was dealing with the same rare disorder was through mailing lists or messageRead More →

As Italian as you can get, this was a dish my mom made all the time!!! I wish I could say you could use “any” rice to make this, but Arborio is the rice you should use for this dish. Thankfully you can now find this type of rice anywhere nowadays. Enjoy! —————————————————————- Ingredients: 2 tbsp butter 1/3 cup chopped onions 2 tsp minced garlic 4 cups chicken broth 1 cup arborio rice 1/4 cup grated Parmesan cheese 2 mediumRead More →

My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the differentRead More →

February 2002 – The famous rainbow cupcake at SeaWorld (Florida)!! From the book: “Before we left the park that evening we had to grant Nicky one last request: earlier in the day he had seen this “rainbow” cupcake and bugged us about it, but at the time we could not wait in line otherwise we would have missed Shamu, so on our way out we stopped and got him the cupcake! He was thrilled.” More in the book –> http://www.butterflychildamothersjourney.comRead More →

Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always. Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an area gets wounded too often, once it does heal (if it does heal), it remains incredibly weak. At this point Nicky can “transfer” from bed to wheelchair, or from wheelchairRead More →

Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. I surprise myself at the kind of person I’ve become. I literally explode when people treat my son with any degree of disrespect because he does not deserve it.Read More →

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 →