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 →

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 →