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Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo – who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian soccer star Alessandro Del Piero. Here’s the video: I want to thank everyone for the kind words, donations and gifts they sent to Nicky via his GOFUNDME and his AMAZON WISH LIST following the airing of the segment. We appreciate it more than you know. I would also like to thank those that responded to my update regarding Nicky’s 23rd Birthday on November 25th and sent him gifts. We will have a big celebration on Thanksgiving Day as we always do. For those seeing Nicky for the first time, a little about his condition. He was born with Recessive DystrophicRead More →

What I am watching I’ve always wanted to watch “Le Miserables”, but that whole musical adaptation thing… I just could not watch it. I tried, trust me, but I could not do it. I guess because I grew up with musicals being ‘happy and fun’ stories, a musical of a sad tale… it just doesn’t work for me. So… when I heard of this new adaptation that was not a musical… YES! I taped it when it aired on PBS while I was stuck at the hospital with Nicky back in June and I finally watched it a couple of months ago and… I LOVED IT!!!! OMG. Lily Collins kills it. Five Stars!! I heard about Black Mirror on Netflix so much that when I was stuck in the hospital with Nicky I decided to give it a GO. All I can say is WOW WOW WOW. Each episode isRead More →

I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go to my Uncle Tony’s funeral in Washington DC this past month, which took my mindset to a completely different level – a mindset that took me a couple of weeks to put in its honored place. I loved my uncle. I did. He actually died at the end of last year and was cremated waiting for a spot at Arlington to become available. He was one of those individuals who seemed all rough and tough on the outside but was as soft as a marshmallow inside. He was not someone that was easy to get along with, but all myRead More →

I was inspired to record a video about how my coping techniques are for Depression as a Special Need Mom. Depression is NOT a bad thing, it’s natural. We wouldn’t be humans if we didn’t feel sad or hurt over our children’s suffering. But we have to rise above it and learn some coping techniques to make sure we can move forward with love in our heart. I will try to do more videos as inspiration hits! Make sure to click the subscribe button and the “bell” for notifications! Enjoy! Love & Light, Post Views: 309Read More →

This year I am on track to read about 40 books. I read 30 so far. Surely some are tiny quote books, but several are much longer, thick books. I am not sure if I am trying to avoid reality or just wanting to fill my time with things I can learn from or distract myself with… perhaps a mixture of both. When Nicky was born I tried to fill in the gap of knowledge by perusing the web and the public library. Looking through the pictures, I gasped. Their bodies looked painful, hands webbed, bandaged, in wheelchairs. Was that how Nicky was going to be when he grew older? What effect would EB have on his body? How long would he live? Were there any treatments to make it better? Was there any research going on? There were no answers. In late 1996 the internet was in its infancy andRead More →

I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →