The end of the beginning...

After years of and many suggestions I've decided to tell my story, or at least make an attempt to start...

I'll start with where I am now, and then I'll explain how I got here:
I'm 26 yrs old, living back in my childhood home with my father, an amazing man who I haven't lived with in over 10 yrs! While this concept is not unusual to many right now, and this by no means makes my story extraordinary...I'm 26 yrs old...and I'm officially 8yrs older than anyone expected me to be.

I spend somedays sitting completely still, just thinking about how I NEVER planned for THIS part of life...while some people simply do not make 5-10yr plans out of choice...I didn't think it would be the best idea to plan for something I wouldn't be alive to see. I had coped with my diagnosis from the age of 8yrs old. I understood and accepted the realities of my disease...I watched close friends in the hospital die (I will also give voice to those friends in the blog at a later time) and I knew one day, probably soon, I would be joining them...so why should I plan for my 20's?? It seemed like a cruel thought to me back then, get goals and hopes in mind that I'll never see, and when my time was up...I would be left saddened by all those things in life I was not able to do or accomplish!

I've nicknamed this time in my life 'the dead zone!' It's not as morbid as it sounds. It's just that THIS time in my life the only plan I had involved me being on the wrong side of the grass (as my dad would say.) I had thought about what my 'healthy' friends would be doing, if they'd be married and which ones would have kids, which ones would be paving their way through the corporate and medical fields...stuff like that. I thought about my mom and dad, and if my passing would heal their marriage and bring them closer...maybe the stress of a sick child not being a burden would take away the distance they had between eachother? Trust me when you sit in a hospital bed for years of your life...time to think is really as you have...well that and soap operas! Too bad I can't be a professional board game player, or skip-bo, backgammon, yahtzee, or any 1 of the games I played millions of times...I would be set for life if there could be such a career!

Now I allow myself to look ahead to my future, I allow myself to make plans, and I allow myself to believe its OK for someone like me to have someone else love me...and let them in! For so long I kept everybody at a distance...I didn't want to have someone get too attached bc it would be me that was hurting them when I succombed to something we already knew from the beginning. Someone like me doesn't deserve to fall in love, want to be married, or have a family. It didn't make sense...why would I start something like that if I wouldn't be there to be part of it? So by the time I was 10yrs old, 2yrs into my diagnosis, I had already settled into this thought and I hadn't really thought about it too much for almost a decade...until now!