It's Simply... Life

We've GOT to get out of here. I am just going insane. Sure part of this has to do with my mom leaving and REALLY wishing she was still here to help me through things... but a lot of it is just I'm SOOO tired of being in here. I try my BEST to keep my spirits up, my attitude in check, and my mood positive... But when Spencer has a rough day mentally and emotionally I just lose it. That's when it's MOST important that I stay strong. But I just break. I want to get out of here SO SO SO bad. I don't just want to, but I need to. I need to see improvement with Spence. The vent settings have been the same for over a week now and I'm not sure why. I'm frustrated because the transplant discussion was put on hold for what I thought the reason to be is because he wasn't off the ventilator and then I find out it's because he doesn't have enough social support to get him through transplant....... But just the fact I wasn't told this - that people aren't communicating and telling me things is killing me! I NEED TO KNOW! I need to get things changed so that he CAN get a transplant and a new chance at life.

I'm just sick of this all. I feel like I'm really getting to my breaking point to where I just can't do this anymore. My mom said it best - I'm kind of in a state of denial. Just hovering there. Not wanting to accept anything. Talking about transplant is seriously, REALLY hard for me. Ever since it's been brought up these past couple days, to start fundraising for it, inside i've been a mess. It hits like a brick wall. It's real. I am SO used to going through everything with Spencer. Asking him for advice on how to go about things... for help. Having him go to meetings with me... talking with his own doctors... I'm having a hard time doing everything myself.

I have these little tiny goals every day set in place for myself. I was finally starting to actually take things ONE STEP AT A TIME... ONE DAY AT A TIME... and to try not to expect anything at all. And then I feel like I'm being forced to think about the big picture.... think about how serious it is.. Think about the life or death situation at hand. Remember that even though Spencer is improving, he could take a turn at any second. It terrifies me. I feel like everyone else is moving on while I am still back in left field trying to catch up... Failing to catch up. This is so hard for me and I feel like no one gets it except for my mom. I have people telling me that it's ok... I feel this way too... but they don't. They just don't get it. They have their husbands to go home to every night... To eat dinner with and discuss the day with... to just sit there with, even if they don't say anything. I have that - but only to an extent.... I can't take him home.. I can't stay here. I have to go home to an empty house. Sure I could stay with a friend. But it's not the same.

I'm just struggling today. I miss my mom. She was the biggest help while she was here. I was really able to keep my mind off of things. And now that she's gone back home it's been hard. I'm so dang lonely. I have been up at this hospital for 41 days.. EVERY SINGLE DAY... usually for 10-12 hours a day... I honestly didn't realize how lonely I was getting. To have Spencer sleeping all the time... but still wanting to be here... Just sitting here. Hard for me to do anything for myself. Wish my mom was still here. I need her. Being around other people is okay... But I don't want to be asked about Spencer all the time. It's not all about him. It's about me too.... =/ So it's even hard to be around other people...

I will adjust to everything again. it will get better. I'll get used to it and accept it. But right now it's sucking. =/ I just can't wait for 3-4 days to pass... Well actually preferably this whole week because I have a lot of discussing to do with the docs that I'm just scared of doing. I don't know the questions to ask or anything. I don't know the first thing about any of this - yet I'm doing it... God give me STRENGTH....

I'm just going to say this... Maybe not for anyones benefit by my own... Just to remind me...

"Everyday may not be good.... but there is something good in every day..."

The good in today: Spencer got moved to the step down unit....