Wednesday, May 12, 2010

Death and Time.. and CF

There is no fancy way to say it... no sugar coated way to put it... but I wish there was... I wish there was an easier way to think of it... to know everything happens for a reason.. But there isn't.
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.


  1. I'm sorry you are hurting right now, Nikki. I can't fix it. Everything you said is an eventuality that some of us face sooner than others CF or otherwise. I love how honest you are about your feelings. People should always be that brave.

    My advice (if you want it) is to fight. Tell Spencer to keep fighting. Tell him that you love him and you'll be with him no matter what. Cherish whatever time you are given to be together because it is a gift. You are in each others lives for a reason. Make the most of it. Acknowledge the reality and then focus on the amazing gift you were given. You are both lucky to have each other.

    Peaceful and powerful things.

  2. Josh, I really appreciate you responding to this. Any kind words really help me. It's rough to go through - Some days I'm okay.. and some I'm a mess. It's just a matter of figuring out how to get through the rough patches and go on with life as we know it :) Things will be okay.. Just got to keep telling myself everything will be okay.

    Thank you.

  3. Hey Nikki,
    I know exactly how you are feeling. I get scared all the time about Adam dying on me. But anyone of us can get hit by a bus today, tomorrow, or the next day. All I can say is, try not to focus too much on the bad. As much as it sucks to have him going in and out of the hospital, you have to focus on the good and do what you can to make him better. I know that I have gotten frustrated, sad, upset when Adam gets sick but it doesn't help him because sometimes there is not a lot you can do to keep him from getting sick. And unfortunately we can't help from getting upset when they go into the hospital because we are girls of course
    Believe me getting married will be the best thing for him. People tell me that all the time about Adam. =) I've seen Spencer pull out of some pretty scary stuff. He is a trooper and he isn't going anywhere anytime soon! You have done a great deal of goodness for him! Keep your head up girl! I don't know if this makes much sense. Sorry but if you need to talk let me know because there is someone that knows what you are going through.