Awakening

It's been one year since an awake craniotomy and diagnosis of an inoperable grade 3 anaplastic oliogadendraglioma forever shaped the landscape of our lives.

One year, since I learned what true love and sacrifice really is. 365 days to learn to become more patient, less reactive, more nurturing, less judgmental, more creative and much less willing to succumb to this trial and throw away any chance of real happiness. 

We've had another year of sorrow and heartache, disappointment, fear and anger. We've had a year of isolation and pulling away. We've also had a year of hope, joy, laughter, growing closer, working hard, and learning to truly appreciate everything and everyone in our lives. 

This year has been the very hardest and simultaneously the most rewarding year of our life together so far. I have been by his side, to literally watch as my hunter put his entire life in someone else's hands with the confidence and strength of the one of this world's greatest warriors. I am in awe. It's been the most terrifying and joyful emotional roller coaster and physical endurance test I can imagine.

But the result...

I don't know how else, but pure hell, to describe the anguish that comes from any terminal disgnosis. Yet to see, feel, hear, and live such love, faith, and hope through this, is nothing short of remarkable. 

For anyone who is a caregiver, whether for a spouse, a child, a parent, other family member, or anyone who is intimately close with you, there are days...more days than anyone likes to admit, where you want to disappear and not have to deal with all you have on your plate. 

For the one being cared for there are just as many, if not more guilt and anger filled days of wanting it all to end and for everyone else to just shut up and leave you alone. Enough with saying we are in this together! Being the one...is not at all what it's cracked up to be. 

I've learned in the past year it doesn't matter what horrible things happen, there will always be insensitive and ignorant people meaning well, but causing hurt feelings. I've learned to ignore and forgive a lot. I can't carry that kind of negativity around with me. 

I've also learned things about myself that have made me truly appreciate the kind of human being I am and what I have to offer myself, my family and those who want to know me. I've had to learn to fall in love with new aspects of my husband's personality and my own. We've both been tested on loyalty and compassion. 

In the last year I have grown faith only to loose it and gain it over and over again. We've been frustrated with why these lessons again and why now? I haven't learned all the answers yet, but I have found hope in people, places and things I never thought possible, especially in myself. 

That moment I heard a whisper, "This will be hard, and you will survive it," was a friendly reminder of all the other obstacles and adversity I have triumphed before. It was that familiar voice telling not only me, we are not alone and there is someone else who knows and understands this pain. 

That prompting, along with a need to feel whole, helped me connect with myself again. I knew Scott was having similar conversations with himself and God and reconciling the purpose of all this. 

I've struggled, been weak, and felt utterly defeated by every aspect of life at once. As soon as I feel overcome with hopelessness, one tiny thought creeps in...and then another. When I finally give in to a smile coming through tears, it forces me to remember our very first  conversation. 

That smile and that thought changes my heart literally, in that moment. I have no choice but to keep the reel on repeat for the first time he told me he loved me and I knew he would be the love of my life. 

In those moments, defeat is instantly replaced with success and my brain and my chest fill with warm fuzzies...I force this exercise over and over because remembering all the good, makes me forget right now and reminds me of the reasons I said I do, in sickness and in health. 

My heartache can be violent and so crippling. I've spent hours and days in torment from fear of having to live with all the effects of chemo treatment on my love, and it's possible outcomes. These automatic negative thoughts are so prevalent, and I have many people depending on me to function, that I had to learn ways to cope that could allow me to not stay frozen in fear. 

My husband kindly reminds me that it doesn't help any of us to dwell on the negative and surmise the what if's. They simply don't matter, even if they do happen. I am not as easily able to get there as he is. I had to really train myself to take time to think about thoughts that take me to another place and time. I've learned to trick my brain into thinking I am there instead of here. It works, one moment at a time.

I've learned in two semesters of this post surgery and diagnosis education, that my husband is far more equipped than I gave him credit for, to live his new life in remarkable ways. What man goes from brain surgery to super dad in a matter of months? Mine. 

He drives me absolutely crazy at times and I know the feeling is more than mutual, but we've been perfecting this rhythm of give and take which frees us to be who we are, feel what we feel, and learn to do all these new things together. 

I know this is not everyone's story and that's okay. I remind myself some of the most epic love stories in history are also tragic. I read somewhere that grief is the price you pay for love. I've learned to be grateful for loss, because it means I truly have something special. 

I've learned it's okay to grieve and mourn and have deep lasting sorrow. These are genuine emotions of the human condition not to be glossed over, reduced to weakness, or medicated out of us. 

They serve much more purpose than most of us realize. Not only to sweeten joy after sadness disappears, but to also remind us of how deeply and securely connected we can be to one another and how our souls rejoice at knowing there is so much more to relationships than superficial attractions and dislikes. 

True love is not perfection. In fact, it's the absence of perfection that tests our ability to compromise and build bridges where none exist. I've learned how to feel weak and not be sorry for it. In the last year I've learned not to apologize for my strengths either. Through truly having to suck it up and bite my tongue, I've also learned I don't always have to say what I think, but I can if I'm prepared for unintended consequences. 

I've learned...

The way life has completely changed for  the good of my marriage and my family is different than any of us ever expected. Our children all have a Dad who's learning how to be sensitive and nurturing. 

All of our children have the opportunity to know and spend quality time, not rushed by outside demands with one of their biggest fans. I don't know how, except for sheer determination to do the opposite of what he was told, Scott does all he does! 

He volunteers at school twice a week, takes kids swimming 3-4 days, drives kids to and from school, is an emaculate house keeper, keeps working on projects, ideas, stays up with technology, and just keeps going, even when he's sick from chemo. 

It's not at all what we thought. It's more painful, difficult and absolutely wonderful than any of us ever had the experience to imagine. Hope keeps finding it's way to us through unexpected ways. 

I'm beginning to embrace that hope springs from not knowing everything. It's in the tiniest spaces of the unknown where we unconsciously leave room for possibilities. Even if everything we know and love right now is destroyed...the potential for something more glorious than we could imagine, still exsists. 

We haven't done this before. But once we do, there's no going back. We are stronger, more empathetic, more willing to forgive the weaknesses in ourselves and others because we recognize where we once where. We had a very hard road to travel to get here too. 

Compassion comes much easier these days, because we've come to understand this one life we have should be spent in sharing hope, love, faith,  strength, and willingness to help others. It's the pursuit of happiness through these activities which truly brings us joy and purpose. 

Awakwnings come in the ways we need them and at the right times individually. The important thing to know is you don't have to do anything remarkable to begin to wake up. Just leave the tiniest bit of room for possibilities and wait...

The Ebb and Flow of Grief is the Essance of Hope

To write a blog and share with the world, or the one or two of you who are reading this, is quite an interesting thing for me. It started as a way to keep family and friends updated on Scott's condition so I wouldn't have to text the same thing 100 times or answer email and phone calls to give information about what is going on in the middle of handling a bazzillion other things. And let's face it. I'm emotional. It gets old to hear, "How are you doing?" When the real answer is far more complicated than most people want to hear in the moment.

As the months have passed and my  husband's "condition" has neither changed or worsened, people have gone on about their lives, becoming less and less interested in the day to day of the Cooley's. It's not that interesting, I know..we live it. So even though my initial need has changed, I still find myself with a need to write. Not because there is anything compelling or spectacular, but rather the contrary. It's all just really regular. I suppose if I'm being really honest, and you already know I am... I just want someone somewhere to know that life, where ever you live it or what you have going for you or don't,  is hard for everyone. Brain tumors or not.

No matter the circumstances we face, there seems to be a big scheme to see what we can learn, how we need to learn it and what we are going to do with what we have in front of us. I do know there is a purpose. The clear message that's been given to me through this,  has opened my eyes and changed my perspective about how I'm choosing to face all of life's challenges from here on out.

We seem to go through all the emotions of life, in whatever capacity we do, to be faced with ourselves and to struggle with ourselves, in an effort to create something from nothing. And sometimes, the only purpose for our grief or pain is literally to help someone else learn something. We are, (okay maybe this is just me)  complete narcissists because we often think there must be something in it for us. Why else would this be happening? Why else indeed.

I don't know about you. but I create all kinds of happy places and good intentions for myself on a regular basis. Mostly, to give myself a break from whatever hard thing is staring me in the face at the moment. There is so much pressure to be a certain way, have a certain lifestyle, eat the right diet, exercise the right amount, pin the most popular posts, or create the most shared, like, pinned, tweeted, instagramed statuses and what have you. I'm not there by any measure of the world's current standards.

But the minute I begin pulling out the invite list to my pitty party, I realize it's a pretty short list. And I don't want pitty anyway. Remember those "How are you?" statements complete with frowny faces, make me simply crazy. So pitty, please...

I know no matter what happens, that in the end I'm not stuck here in grief or pain. I am not forced to live a life of unhappy endings. I can chose to dip my toe back in  and go as gradually as I need to  and go with the full force of life, or I can sit back and wait for it come for me. Because now matter which way I chose, it will come. The ebb and flow of grief, or any human emotion is that way for a reason. Once it comes back to us, or we get back to it, we can take a bit more, go a bit farther, get a bit stronger and last a bit longer each and every time.

That seems so much more merciful than to be forced to  soak in all the required learning all at once. Anyone who's ever been  student of anything, knows that isn't how true learning occurs. Line upon line. Precept upon precept. This is a true universal concept, no matter what your personal or spiritual beliefs are. The universe is set up in such a magnificent way, to keep bringing things around, in it's own time and when it is right for us to learn, so we have infinite chances to  discover, over and over again. So we can take in the relevant bits we need in that moment and apply them in a logical way.

It's the only explanation that makes sense for all the seemingly senseless things we humans have endure on a regular basis. What I've discovered is the ebb  and flow is the very essence of what breeds hope. Without this coming and going, there would only be absolutes. No hope. No faith. No real growth. Only believing in what we see, and never really understanding ourselves or each other on a deeper level. There would be no benefit of the doubt, no wait and see, no real discoveries.

Will things be hard? You betcha. Will life always be what we want or how we want it? Nope, not even close for most of us. Life really does seem so unfair if you look only at events and circumstances. When we can see the bigger picture,  often only through adversity,  is when we are open to understanding a master plan at work that involves us having many more chances to grow stronger, help others, be better, do better, and LIVE a full life. No matter how long we've got.