The worse thing you could do...

Wanna know what is the worse thing you can do to me? Make me like I am right now, stuck, unable to travel or go anywhere. My dad has a big birthday this winter and I can't go see him. I can't go by myself because my family needs me, and I can't afford to take all three with me, let alone being able to push two wheelchairs with two hands. It ain't happening. Greg has retired his chair, but he can't really walk long distances, any air travel with my family is completely out of the question, not only to Italy but, well, to anywhere. No vacations for us, no one day trip to the beach, to an amusement park or to a national park. Connor keeps bugging me about taking him to Legoland. Yeah. I wish. Connor is stuck at the house like everyone else. I am not asking much, am I? ONE DAY. Nop. Nothing. Is this temporary? It's unknown. Greg could become independent within 6 months... or 6 years. If we'll go through with the transplant for Nicky once Greg is a bit more independent (whenever that will be), it will mean we'll be grounded for a full year after that due to the weakness and precariousness of Nicky's immune system at that point. And then, there will be the unknown of how he'll be doing after that.

Is this a big deal? It is to me. We have no family nearby. All my friends are everywhere BUT here. This means we're stuck and alone. Is it any wonder we are truly considering moving to Italy when Greg retires? Is this a shock? To be able to spend Christmas or Easter surrounded by family? How many years have YOU been away from your family? For us, is just too long. Decades... Amazingly enough, I was ridiculed for this too. Whatever. I thought my life was MINE to live. Am I wrong? Greg is the one that suggested it and wants to go! LOL. Give me a break.

So, why did I move from Italy to begin with? I get that question often times. One of my cousins was asking me that a few years ago... "were you running from something?" Nothing could be further from the truth. But, to know the truth, one has to know me REAL well. The truth is that I am, by nature an *adventurer*. By the time I was 18 I had compiled a scrapbook full of travel photos. My favorite collections were stamps and postcards from all over the world. This is one of the reasons why I didn't want children in my twenties, I wanted to LIVE. Of course, hindsight is 20/20, I probably would have gone about the whole thing quite a bit different knowing what I know NOW, but at the time I could only go by what I knew back THEN. I found every opportunity that presented itself and I grabbed it. I was not running FROM something, I was running TO. By the time I was 20 I had gone from California to Florida and back. Amusement Parks, National Parks, loved it all.

I am older now... just turned 46. I still want to travel, still want to see places. I can honestly say, there is nothing in the US I am really dying to see... maybe New York. My 'bucket list' includes Egypt, Paris, London, and Italy, yes, glorious Italy, I want to see it all. I want to take photos everywhere. I've always been keen on photography, by the time I was 10 years old I had compiled photo albums in chronological order for every member of my family. Yes, I was 10! I now have magnificent scrapbooks that are filled and I want to fill-and nobody to show them to. But, not now. I have to contend with the now. The now of taking care of my family, who will always come first. I know sometimes I've been criticized of making things about "me". The truth is, when Nicky was born with EB, it's almost as if a bomb exploded in my life that turned everything upside down. EB enters every aspect of my life. I always have to make sure the bandages are changed, the Doctor's appointments made, the transfusions taken care of, supplies ordered, and Nicky is HAPPY!!!! Everything falls on my shoulders, but somehow I am not supposed to complain, ever! I try to be positive and on most days I am, but on days like today, confronted with the reality that I can't possibly go to my dad's big birthday dash, yeah, it's depressing. I don't know WHEN I'll be able to go to Italy and see my family, at this point it's *definitely*no sooner than 2012, it will all depend on so many things which are all up in the air right now.

Give me this day of feeling sorry for myself. It does not last long. I will be better tomorrow... promise...