The days to fight for!

Today was one of those amazing days! When you spend most of your life in a hospital bed, thinking about the world going on outside your 1 window room, vacations and exotic places are only in your imagination or dreams. My Dr's were well traveled, brilliant men, and had no problem spending time telling me about all the amazing things to see once I was free from my burden. I remember one place I was described...it was in Spain...the water is so vibrant and clear that if you floated on your back and looked to the horizon you wouldn't be able to see where the ocean ends and the sky begins! I wanted more than anything to see something so engulfing, so amazing! I haven't made it to Spain, I haven't even made it across the Atlantic YET (it'll be in my bucket list I PROMISE!)

By default I was lucky enough to accompany my father on his corporate paid 8 day vacation in St. Maarten. When I say 'by default' I mean my parents were seperated, so his spouse (my mom) wouldn't be his +1, my brother had enlisted in the NAVY and was stationed in Japan, on the Kittyhawk, so he DEFINITELY wouldn't be going, which left ME! For anybody who has never been to the Virgin Islands, please add that to YOUR bucket list! Driving up and through the mountains there can definitely put your faith to good test, and I could clearly see where the horizon met the sky, but I imagine the color wheel for blue was created from looking at the waters from the top of one of those mountains! Every color of blue I've ever imagined in my dreams was right there in front of me...it wasn't just an image or a thought anymore...I could feel it and smell it! I was 20 when we went, and 2 yrs past my assumed expiration date.

Growing up in Florida we are privelaged to be surrounded by water, and the beach is never more than a 40min car ride, unless you choose to take a long trip to a different beach...and by long I mean 90min! I was introduced to swim class when I was 9 months old, and my parents swore I was a fish in another life. In Florida the 'wait 45min after you eat to swim' rule is really like 15min...and I can't recall EVER getting a cramp either.

Regardless of the beaches I had seen up until this point, nothing could have prepared me for a place so breath taking. That was a day that made all my bad days worth fighting through. Today even still that vacation with my father is something that's so special to me, and something I'm so thankful for. What I haven't told you is outside of my illness I had suffered a near fatal head injury...as if a double diagnosis wasn't already ENOUGH to handle!

8 months before St. Maarten, 5 days before my 20th birthday, and 14hrs before my brothers first trip home from Japan. 3am on August 3rd I collapsed in the kitchen, while hooked up to an IV pole, and my unfortunate luck had my head land on the wheel of the IV pole. The crack in my skull was a horseshoe like shape around my right ear, my brain was bleeding on both sides, my eardrum was non-existent, and when the paramedics arrived I was unconcious. Still to this day I cannot imagine the horror that my mom felt at the core of her soul when she found me, and I pray with time the images in her head of this have faded (though doubtful.) A head injury being what killed me was almost as unfair as a cancer survivor dying in a car accident...it just seems unfair. I didn't die though, and I didn't end up with any horrific side effects...which all the Dr's assumed I would have many issues from the injury. I guess the promise I made myself when I was younger, which was to consistently prove ALL Dr's wrong, paid off in this circumstance as well!

After all the chaos settled, my recovery process began. The post hospital experience of my head injury is unparalleled to anything else I'd ever had to handle. I was completely deaf in my right ear, which it was uncertain if it would ever return (it was kind of funny though when people would forget about it and talk to me on my right side...a foghorn wouldn't have been heard, much less a voice) I also had extreme difficulty remembering things short term, persistent migraines followed me every waking moment, and for the first time reading comprehension felt impossible. The thought of normalcy, even normal for ME, I feared was lost forever...and I was more scared then the day I was diagnosed. To think 8 months later I would be traveling to the Carribbean with my father would've seemed like a cruel joke to most, but for me getting well enough to go was the ONLY choice. I returned to college within 4 weeks, what used to take me 1 hour to learn was now taking me 4 hours, but I didn't care...it was the first daily thing I could start to do so my brain would be used and start healing!

Every frustration, every tear, every Dr appt and daunting procedure, was worth is in the moment our plane landed on that beachfront airstrip! I got to swim with dolphins for the first time, I was cleared to even go scuba diving for the first time! In the midst of it all I ended up on my first full nude beach too...AWKWARD! A million little memories happened on that vacation, and head injury in tow, I remember every 1 of them still to this day! I sometimes think I might not have been this thankful had I not overcome such a trauma so soon before, but I did, and I am!

I got to lay on a beach today...I got to look at a clear blue sky with no clouds...and clear blue waters...TODAY was also one of the days to fight for!

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!