Blog · January 2, 2016

My Goal for 2016

10389125_707340766037526_3721492110233964899_nI am having a hard time reconciling it’s 2016. When I was a child, the year 2000 seemed so far off into the future that anything beyond that seemed such a loooong time away… and here we are.

While I was born in the mid-60s, I barely remember any of them at all, so when I think of my childhood I think of the 70s, and the world has changed so much since then, sometimes my brain wants to explode. As a child I rode my bike and watched “Happy Days” while playing Monopoly or Checkers with my sisters. When we visited my grandma’s mini-farm I drank water from the hose, petted the rabbits, checked for eggs in the hen and climbed the fig tree to sit in the branches while reading a book. I realize one could still do those things today, but that was my childhood, easy-peasy. Nothing else. No electronics, no videogames, no cell phones, nothing, just a radio, which, might I say, played much better music than today, alas.

So…it’s 2016 and the world is moving forward FAST. I am too old for this stuff. For example, we got the Amazon Fire-Stick for Christmas as a first step to possibly try to dump DirectTV in the future since it’s so expensive, and my mind is trying to figure it all out and I get confused with the maze of the apps you need to download for it, and how to stream and how the signal needs to be strong… I spent the whole morning googling for “tips and tricks” and I am lost. I know I will eventually get it if I play around with it enough, but my head is spinning in all sorts of directions. Mind you, I consider myself a fairly smart person, even my husband and my children rely on me when it comes to electronics and instructions; just the other day my husband told me that one of the qualities he likes best about me is how intelligent I am, and while I love him just for saying that (he’s my angel, truly, I have such a crush on this man it’s insane), but at times like these I feel my brain fuming.  I am up here in a cloud of smoke as we speak, lol.

So, as I was trying to come back down to earth, I realized I’ve been a little too intense on my blog lately. I try not to let EB dictate my mood of the day, and try to be positive and upbeat, but I have to concede that my MO to deal with things is that I have to write it all down to let it all “go”. I suppose this is a sign of a true writer, when you only feel as if you can let things “go” if you write them down. I used to have a diary for that when I was younger. Maybe I need to go back to that. But I do want to try to be more upbeat and positive in the new year, find things to write about that are more inspiring maybe, more funny perhaps. Like this antidepressant comic? Laughter is, after all, the best medicine.

I think my biggest antidepressant this year will be my trip to Italy with the boys to visit my family. I also promised Connor a visit to Magic Mountain for his 13th Birthday. I hope we can have more opportunities for happiness this year, but my biggest wish, of course, would be a cure for EB. I do think the biggest factor of my lousy mood is that our first attempt at having Nicky being part of a clinical trial in 2015 had negative results. Just the fact that the trial worked for all the other patients EXCEPT for him put a bigger damp in my spirits than I previously realized. But enough of that. That was the past. More exciting trials are coming up, hopefully sooner rather than later, and my job is to try to keep Nicky as healthy and as whole as possible until that day.

Sending much love to everyone with best wishes for a prosperous new year!

Love and Light,