Blog · April 12, 2015

Living for Today

“Losing a baby at birth, followed by a

I haven’t updated my blog in a little while-I am usually a chatterbox, I love to write and to me writing is therapeutic, but lately between my book release, Nicky’s extra trip to Stanford, Easter, Greg’s birthday and all I think I lost track of time. This next week I have paperwork galore to fill out. Not only for Camp, but I am also applying for SSI for Nicky and I want to get my kids their Italian Citizenships. I imagine that once summer comes around I might think about finding some sort of part-time job. Now that the book is finished and my only preoccupation is marketing, I can devote more time to do something that makes me happy. I have somewhat of a luxury in my golden years (I am 50 afterall) to perhaps find a job I might actually enjoy in the field I studied, photography/graphic design or both. Would love to do something from home or based at home. So much of my day is devoted to worrying about Nicky and taking care of Nicky, I need something fun to keep me from delving in the darkest parts of myself.

It’s all a wait and see, I guess.

In the quote I write about people in general always thinking I am exaggerating about Nicky’s condition. This is not something that is true anymore, mostly due to the fact that I learned to open up about things and showing the hell of what Nicky goes through the past few years. I call RDEB a monster, and Nicky is not one to be shy about calling it even worse. To be honest, I don’t know what this kid would do had he been born 20 years earlier. He lives at his computer. Would he be reading books? He hates reading. Would he just be watching TV non-stop? What exactly could he do since he can scarcely move? The only reason he’s in a happy mood lately is because of his online friends and his willingness to completely forget about his pain while he plays. So, I resort in being thankful that he’s happy on most days, make sure I don’t run out of pain meds, and do not think about the future too much. By writing my book I put the past into the past. The future is a mystery. We all know what RDEB means, and it’s not good, but I do hold hope in my heart that somehow, someway, Nicky will pull through. So, I just live in the present. All we have is today. I live for today. I make sure TODAY is a good day. I try not to be upset about things, I want to laugh, and I shower my boys with kisses.

It’s really all I can do. I will worry about tomorrow… tomorrow.

Love and Light,