Death scares me. It scares me now more than ever. I have been forced to see death in a whole different light - and it's upsetting, aggravating, frustrating, and devastating to think about all at the same time..
I never thought that I would have to put death into my reality so early in my life. But lately - it's been the only thing I can think about. Everything is a matter of time to me now. Everything is in years... It shouldn't be... I know it will get better - I'm just trying to grasp... death... dieing... passing away...
Death and cystic fibrosis never clicked with me until a month ago. I didn't realize the reality of it all. I thought... psssh he will be the exception. He will be the one guy that lives in to the 70s or 80s with CF.. We can fix it all and it will all be normal... ok... fine...
But it's not true... at all. It's all very real. He is going to die eventually and I hate it. I'm scared and frustrated and tired of thinking about it. I never know when that day will come... It shouldn't come in a long time... but how do we know?
Why do the most deserving people have the most devastating problems.. It's not fair. I hate it.. I'm pissed off. I want my love, my best friend, to live a long life. To be able to do the things he once did. It all just seems to be going in a downward spiral. Things get worse... We take a couple steps forward and then more than a couple steps back. Make no progress. Can progress happen? will it happen? Who's to say?
I just need to accept death. But how? How do I deal with the thought that my future husband is going to leave me and his family and friends behind well before any of us are ready. How can I live with knowing that I have a limited amount of time with this wonderful man? How do I stop counting years.. and just live every day to the fullest?
I mean... I do my best to cherish every single day.. Trust me - I do.. and usually I do a pretty good job at all. I can make the best out of the day.. But if I stop and give myself time to think about it (usually in the evenings.. or when he's sick) I start thinking about time... time time time.... I want to stop putting everything into years!!!! We don't know that we have 3 years or 30 years together.. and we can't know that..
-sigh- No one should have to go through this... Especially so young... not the CFer and not the care team. It's hard. Unfair. And I absolutely hate it.
Time. Time. Time.