I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be so ‘bent’ right now. I know how little PT he needs each day for things not to go to the point of no return and he started to cry. When he cries he can’t speak, so he wrote down for me all his feelings.The bottom line was that he did not want me to give up on him if he did not want to do something that brought him pain. That just about KILLED me.“Giving up on you” I told him “As if that it’s ever going to happen”? Life with EB. It sucks so bad… It’s hard to beRead 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: 465Read 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 →

It’s often a full time job caring for a child who is medically fragile. We are not only parents; we become nurses, therapists, chauffeurs, companions and more. For some of us, the needs of our child are so time consuming that working outside of the home becomes impossible and impractical. Thankfully, certain cities, counties or/and states realize this and help. Many children with disabilities receive support, and as their parents it is our responsibility to fill out the mountains of paperwork and jumping through the bureaucratic hoops to get them services, and sometimes it’s hard to even find the support. I wrote this in my book Butterfly Child: It is amazing to me how remarkably difficult it is to locate the services that do exist. Hunting for resources can be an experience comparable to being in a labyrinth. Here I was, thinking California didn’t care about the disabled, and IRead More →