Wednesday, November 30, 2011


Ok ok - so I get why people will say "things will get better. I know they will". It's out of optimism, support, and care. They need something to say so somehow it will make things better... right?
I'm sorry but telling us that You know Spencer is going to get better and everything will get better is really starting to bother me. It doesn't make me mad... it just is kind of one of those small annoyances. It's one of those phrases that people say to help support someone but they really don't get the weight of their words unless they've actually been in that position and realize what those words really mean to the sick patient and caregiver.
Telling us it will get better is just like telling a terminally ill cancer patient who they can't do anything else for that it will all get better and not to worry.
There isn't a difference. You're telling a terminally ill, end stage, Cystic Fibrosis patient who's only chance of survival is a double lung transplant which, by the way, isn't at all guaranteed and who's not even yet been evaluated that things are going to get better. That you know they are going to get better. No one know's he's going to get better, guys.
It's easy to say these things.... It's easy to just feel like you should say something and so you don't actually think before saying it.
All I'm asking is that you truly think about the situation and don't speculate before you say something. I'm not trying to be rude or ungrateful... I'm just trying to tell it as it is. As I feel it. I'm entitled to my opinion.

Now that i've gotten that off of my chest... On to other things.
This week has been hard - just like any of the rest of them. I had a COMPLETE break down Monday evening. It was horrible. I'm just to the point where I didn't know where to turn anymore and I just can't see the light at the end of the tunnel. I've since gotten better since Monday evening - but I'm still having several of the same feelings. It's just not as overwhelming.

It's really hard to sit here and watch my best friend fight to breathe. To not even be able to be awake longer than 1-2 minutes at a time. Sure it's hard on him - but it's equally as hard on me. Possibly even harder.

At first I was optimistic, hopeful, I knew things would get better. But it's been almost 3 months now and it's getting harder and harder to see the end in sight. Things keep looking less hopeful as we go along. I see him getting more and more weak after putting in so much effort to regain some of his strength. I know he's sick with an infection right now - but it completely takes him out of commission and the next lung infection could be the last. We never know how things are going to go.

I am still trying to be hopeful that he'll be able to get new lungs. Sure most often I am very doubtful because I see the condition he is in and I know all of the facts... the odds... But just the fact that I can still see the possibility of him getting lungs... even if it's just for a moment, just a second... that's the hope that i'm holding onto. As long as I can still see that goal....

The holidays are really hard this year. I want them to be so enjoyable and more... But It's super hard on me because I am so torn. I want to and need to be with Spencer. It could be our last Christmas together... But I really want to be around my family. But there is no one I'm leaving Spence here by himself.
I am going to be here with Spencer on Christmas. And I am trying to think of every way possible to make it such a memorable Christmas. We have been blessed to have some 'extra' money since I am babysitting a little bit and since we are finally getting the SSI that we are supposed to be. The last 2 months I have also stuck a little bit back into savings... I've decided I'm going to use it to make Christmas memorable. Wonderful. Spectacular. I think we deserve it. If we can't do anything else, then we deserve to treat ourselves. If this is going to be the last holiday we spend together... it's going to be good. And I want to know i've tried my best to make it that way.
It's just been hard because I had so many thoughts and ideas that we could do together this Christmas.
We both really wanted to go see the lights at Temple square... We've been wanting to do that for 4 years now... Never have gotten to because he's always been sick. We wanted to take one of the carriage rides around temple square on the horses. (That's originally how he was going to propose to me... until I figured it out haha) We're finally in a place of our own and so I was really looking forward to putting up a Christmas tree - decorating... Making our house festive.... I'm still going to try to do this at the hospital. But it's going to be VERY downscaled and he can't help me. I wanted to Christmas shop together. Luckily we got to do that together last year... But still.

Just things like that that we are going to miss our on this year. Of course I hope next year we'll be able to. Oh the things people take for granted.

Anyway... I just feel like i'm rambling... (I am!) Need to put together the rest of the photobook of our wedding pics and put together Christmas cards. That's just me thoughts for the day, I guess!

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