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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 →

What I am watching The fact that I was going to watch The Spanish Princess on STARZ was a given! This is basically the “sequel” to “The White Queen” (about the life of Elizabeth Woodwille, wife of Edward IV) and “The White Princess” (about the life of Elizabeth of York, daughter of Elizabeth Woodwille, who married Henry VII). These are all historical novels written by Philippa Gregory. The Spanish Princess is Catherine of Aragon, first wife of the infamous Henry VIII, son of Elizabeth of York. The episodes center around her arrival in England to marry Henry’s older brother Arthur. When Arthur dies months after their nuptials Catherine schemes to marry Henry to maintain her previous status of future Queen of England. While I did love the show, I still think the original White Queen was much better, more “intense”, so to speak. Nonetheless, five stars! I remember clearly whenRead More →

I will try to update this blog on Nicky every now and again, and I felt it was important to start now because, even though he’s finally improving greatly from his 6 months ordeal, there are things that have deteriorated from him spending a significant amount of time not being able to move or eat. As I am a writer, I wanted to also make sense of it all from a mother’s perspective. One of the main reasons why all of this happened in the first place and it took so long to get things resolved is because Nicky, being 22, means he can no longer see all the Doctors that took care of him when he was a child. Considering how freaking RARE RDEB is, everyone is just at a loss on how to help, that’s where frustration and a million phone calls come into place. “I will MAKERead More →

Something happened when I tried to share my latest post from this website on Facebook on July 10th… Hmmm… really? People on Facebook have reported this website as abusive? When I further tried to copy and paste a link to my blog on Facebook I got this message: I requested many reviews, complained, sent feedback, asked, wondered, you name it. I got no response at all. I also read through the Community Standards and there is absolutely NOTHING in there about having “wound pictures” on my blog (not on Facebook, mind you, on my BLOG) that are deemed spam or are truly that graphic. There is no nudity in these pics, just wounds on arms or legs. This reminds me of the time a few years ago when I used to post my son’s wound photos On FB itself and I got put in Facebook jail for it. That postRead More →

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6 months for our life to get back to normal, which explains why my blog became silent. It’s not that I had nothing to say, au contraire! When you spend oodles of times and endless nights in the hospital, you become this zombie that is hard to describe. I did start a diary again and that’s what kept me sane. It all started late last fall. Nicky likes to tell the story that it started back in 2017 when I accidentally ripped his tube out, balloon and all, while helping him go to the bathroom, but the truth is that heRead More →

What I am watching Three years ago, as season 6 was about to start, I got tired of hearing about Game Of Thrones everywhere, so I decided to binge on seasons 1-5. I first started watching 1 per day, then eventually were 2, 3, by the time I finished binging on season 5, season 6 was about to end, so I watched the whole last season in 2 days! I became as obsessed as the rest of the country. There is a reason why everybody talks about this show; the production, the fantasy, the storylines that converge at critical times, the level of unexpected twists, the darkness, the gore and the excitement. It’s everything rolled into one. Five stars! It all started with a conversation with my son’s RN. She was so excited about the upcoming season of “Call the Midwife“. I love this lady, she’s bent over backwards forRead More →