My two cents for the day......

I want to be home. I don't want to be home. I want to be at the hospital. I don't want to be at the hospital. There is nothing for me at home but a messy house that just needs to be cleaned. No one to come home to - no one to talk to. No one to do anything with. No motivation to clean, not even a desire to clean - maybe the thought when I'm at the hospital to clean sounds good, but once I get home and notion goes straight out the window.

There's not too much at the hospital for me either. I get to sit here and watch Spencer sleep for 10 hours a day with maybe 20 minutes at a time where he's awake and we tend to just stare at the blank wall anymore. This is all we've known for the last 2 months - the conversation has run dry. There is nothing new to discuss. We're sick of doing the same things every single day in and out. What else can you do when the one you love is basically bed bound and feeling sick 24/7. So I sit here. Because I don't want to be at home. I don't want to leave Spencer here alone.
We very rarely get visitors, but that's no surprise. Never really have gotten visitors. Guess people don't really understand that Spencer is dying and it's only a matter of time. One can always hope that he'll get new lungs... One can pray that's the case, but we're never ever going to be guaranteed. Even if he gets on the transplant list - it's not guaranteed it'll happen. People aren't grasping that the time to Spend with Spence is now - not later. There might not be a later. I understand it - I know our time is short, transplant or not. I'm here every day.. but I'm getting tired. Weak. My courage and strength is fading quickly every single day. Every day I'm here I continue to feel like I just can't do it today. That today is going to be the day I just kind of "quit". Quite being positive, quite being optimistic. But then, somehow, by some miracle I pull through. No idea how it happens. I look back on the previous day - NO IDEA how I ever made it through considering all the emotions I went through.

Everyone calls me so strong - well thanks... but I sure don't feel like it. You don't know what goes inside of my head... what I do when I'm by myself. If you knew - strong wouldn't be the word to describe me. Maybe once - but not to much anymore.

But you know... I really don't want to be at the hospital anyway. I hate it here. I hate seeing the same people every single day - who tell me they are sorry for me. Sorry for Spencer. Sorry for our situation. Ok your sorry - but what do I say to that? I'm sorry for us too. it sucks. Be glad you don't have to live it. Sure i'm thankful for the people who are kind to me - but when you see the same people every single day you tend to get bored of it too. I don't want to be at the hospital because I get upset. I get mad at Spencer. Not rational to be upset at him - he can't help it. He'd change it if he could. But I get really mad because he's sleeping all the time. He doesn't talk to me anymore. He says he 'can't talk' because he's on the ventilator. He CAN. I can understand him. But yet he won't say anything to me. So I get angry at him. And I shouldn't. I mean what can he possibly say to me anyway? he does the same thing every day. Doesn't even get the joy of seeing the outdoors. Feeling the crisp breeze. At least I get to do that. I shouldn't complain about it. I don't want to be at the hospital because I'm sick of the food. I've eaten the same food for 2 months. I hate the weight i've gained because of it. I just hate it.

I feel guilty being away because Spencer can't. He can't do the simplest things that we take for granted. He can't even sit up for more than 30 min at a time. It's not fair.

When I found out Spencer's Co2 levels went up again it really hit me hard.

this.

isn't.

going.

to.

get.

better.

It's only going to get WORSE until he gets new lungs. If and When he does - because as I said before, it's not a promise he will. Never ever will be. How the heck am I going to make it through. I just do it because I have to. Because I love him and that's what wives to. I made a promise to him to stick by his side no matter how sick he gets. I WANT to be here for him. It's just hard. The hardest thing I've ever in my life had to do. I don't know how anyone else does it. How am I even supposed to be happy when Spence is dying? WHY is he dying?! Why my husband, who I feel i've barely even gotten to know.

I'm just feeling so damn bitter today. with EVERYONE... EVERYTHING. This isn't fair. And i hate that line. Because i know life isn't fair never has been. But how am I supposed to be ok with him dying. Why now. Why did it have to happen all of a sudden? Why one morning did our life have to be flipped completely upside down with absolutely NO warning. I'm so angry!!!!

This is just one of those days where I feel like I can't deal with this. That I just want to call it quits. Everything else in my life it's been really really hard, curveballs have been thrown - but eventually life has gotten better. Things go back to the way they were - if not all the way, at least somewhat. This is different. I have no control over it. NONE. Spencer can't control it at all. It hurts me to know that he has to have help to breathe. To do the simplest thing ever. Just to breathe. >.<

I just hope today gets better. My mood improves because it's horrible right now. I don't want to be here. I want to go home and curl back up in bed. But I can't even do that. Blahhhh. I feel like I can't do squat.

This is a new life - I have to learn how to live with it.... Cuz it's not going away....