Livin' on a Prayer

Sunday is usually the hardest day of the week. I almost always feel super emotional on Sundays. I think it's partly because it's the start of another week and partly because the last week is over. I want so much for things to just go back the way they were...even as imperfect as things were before cancer.

My heart aches for the times when I would make a stupid joke and he would laugh with me, because he just got it. No explanation necessary. I miss that. I didn't realize just how much, until today. It hit me like a ton of bricks. I've felt it before, but could never quite put my finger on it. I keep praying for answers, for strength, for comfort, and sometimes like today, I pray to just be able to keep holding on.

I've hinted at the differences there are now, versus before his diagnosis...but today I finally understood what it is I'm feeling. That tiny little part of us that made me feel so secure and in tune. That almost indescribable little thing I always took for granted, as soon as I discovered it. It's the way he made me feel understood without saying a word. Turns out, it wasn't so tiny or unnoticeable after all.

It's still there in pieces and maybe it will return in full one day. But for now, I am deeply mourning the days I didn't have to logically make sense, or spell things out to be interpreted correctly. I miss the way he would look at me and grin with unspoken understanding. I miss the telepathic way he would just sense what I wanted or needed. He still knows, I think, but can't express it the way he did before.

He is without a doubt, one of the most amazing people on this planet and I cannot see myself without him in my life. So this is just one of those things, that go on the list of having to get used to. I wonder if I will ever get used to not having that same kind of connection with him. Will it be replaced with something else just as wonderful?

No one tells you once brain surgery happens, there is a large chance the way a person thinks, how they react to everyday things, what they wonder about and how they feel, will change. Even slight changes in these things can be difficult to embrace. Mostly I think, because we don't always account for the little things that make us love or even like someone.

I think about how much more difficult this would be without understanding and knowing hope. I still hang on, and hang in because I know that somehow, if we keep moving forward, things will be the way they are supposed to be.

There is so much we have to learn about ourselves and find out about the rest of the world, while we're still here to do it. Taking chances, making the most of everything, and working on not taking any of those things or anyone in our lives for granted are all big jobs to do. We waste a lot of time thinking too much and acting too little. 

Putting aside the guilt and shame of not feeling adequate to emotionally or physically handle just how difficult all of this is, is challenging to say the least. It's so hard because everyone else has gone on and sees us differently.  This is old news, and let's face it, he doesn't look sick. He doesn't fit any of the stereotypes of what having cancer is supposed to look or feel like.

We can't always adequately explain why we don't do things the way we always have. I've had people say to me, "You aren't yourself. You normally wouldn't act this way." Or some other polite version of telling me they don't appreciate how I have changed. I just expect them to understand, but how can they? And the stinger...I've said this very thing to Scott. Oh the double standard is deep in here!

We are creatures of habit. And when you have your world come to a screeching halt, flip you upside down, push you backward, bind your feet, and tell you to continue on your way...how can you possibly do things the same way you did before? How exactly do you continue to appear to be unchanged, when you ARE changed? And why must everyone keep pointing this out???

I have changed. I've had too. I am surviving most days and I have to keep reminding myself this is also true for Scott. So much has changed, and yet so many things have not and we still have to find ways to continue being who others have come to count on and expect. How do we do that without the acknowledgement of what has happened here? We need people to understand we have to learn a whole new way of being, and this will require a lot of patience.

I find myself wanting to express the deep sorrow of this situation in order to provide my friends and family with some context for why we aren't the same, only to keep bumping into the hope that something better is growing and evolving from all of this.

I've realized today, Scott has made far more peace with this than I have. I'm clearly not at acceptance yet. I'm learning how to have more patience, empathy, and understanding for everyone, but especially my husband and myself. 

Learning is hard and complicated and takes a lot of time. I get to practice being kind and gentle with myself, along with forgiving my own weakness and impatience. Which, as hope would have it,  is teaching me how to recognize when others need these same things from me.

The reason I keep this blog going is to give a voice to something that doesn't seem to really have one. I now have a way to process difficult emotions and come to grips with what is most important to me, which gives me a way to continue to hunt for hope. Even when it seems easier to just give up.

It's not death that scares me. It's not losing the man I love to this horrible disease... What scares me most is the thought of being here together, wasting this precious time we have dwelling on what we don't have and not learning how to put aside things that don't really matter.

Good or bad, happy or sad, rich or poor...better or worse. The grass will always look greener where it's watered and cared for. We've got to keep watering the grass on this side of the fence, and learn to care for it as it changes from season to season.

We've been given a second chance at hope. I'm gonna keep trying not to waste time feeling sad for what I don't have right now. I'm going to keep praying. I need to hold on to what we've got...Thank you Bon Jovi for giving anthem to my feelings. This is exactly what we are doing, Livin' on a Prayer!

I always feel better when I sing...and pray. I love these kind of reminders, they stay with you!

Sing with me. Whoa... we're half way there...Oh Oh....Livin' on a prayer...take my hand, and we'll make it I swear... We've got each other and that's a lot for love, we'll give it a shot...

Or just hit play.

For those of you reading this who aren't children of the 80's like me, you can thank me later for posting this original music video here for you... Jon certainly knows how to hunt for hope.