I think I'm just having a SCREW CF kind of night.... I hate how much quality time it takes away. Usually the hospital stays are not too bad.. we snuggle up to a movie which is nice because he can actually lay down in the bed.. we actually DO get some quality time together because he's in a place he can rest and feel better and after week 1 the second week he's feeling "healthy". Isn't it sad that our quality time is spent in the hospital because the minute we go home he seems to either catch another bug or get sick with his liver, kidneys, or intestines?
I am also struggling with seeing Spencer in the condition he is in. He looks so healthy (minus the horrible weight loss). He is joking around. Getting antsy. Wanting to get out of there. But his body isn't playing along. It's just so terrifying. Tonight I wanted to have a conversation with him so bad - but we have to work for each and every word that he says. He has to work extra hard to say it and then I have to put ALL my focus into the shape of his lips and the slight sounds I hear from the trach. one little conversation takes SO much energy. So mostly it's me telling him things - and I'm running out of things to tell. I try to have a conversation like we normally would... but when I'm in the hospital with him every day, I don't have anything new to tell him.
I hate that we might not even get the life back that we once knew. It would be one thing if we could be guaranteed him getting better and coming back home etc... but we're not guaranteed anything. We never are. Life is full of curve balls. It's all kind of hitting me again the magnitude of the situation. I do okay for a few days... It feels like I have accepted everything that's going on - I'm able to talk about fundraising, transplant, the future... but then I have a couple days where I have a little set back myself and discover I'm still in a little bit of denial. I feel so very overwhelmed with the situation and can barely cope. On days that I find it hard to cope I so badly just want to shut off to the world, but I find that hard as well. It's a vicious cycle.
I just want it all to end. I want Spencer home. I think one of the hardest things is not knowing what the future may hold. Usually we have a discharge date... but right now - it could be a few weeks, a month, or several months before I can take him home... and what might happen in between that time? It's stressful.
I just needed to get down some of my thoughts so that I'll be able to sleep a little bit better. Whether they make sense or not. I can't get my exact thoughts down - it's impossible. But this is as close as it gets...
Tomorrow will be better. Get to go shopping for some jeans (wish me luck) a couple warm shirts, and possibly hit up the craft store... Then spend the weekend with my love. Going to try to spend the night up there Sat and Sun night... hope he has understanding nurses!!!!