Tuesday, November 15, 2016

The Quiet

The Quiet
We are surrounded by the quiet. Where once was a young man's voice of happiness and joy and at times of pain...there is now only the quiet. 

I let the six month anniversary of his death pass without a word because I want others to feel how it feels- the quiet. 

What I wouldn't give to hear his sounds in the night. The sounds of the morning. The sounds of his living in each of our days. What I wouldn't give to sit back and watch his ingenious ways to flood a bathroom, make a giant mess eating popcorn and chips- oh the sound of his crunching of chips, how I miss thee!

Instead we have the quiet. 

Six months ago we lost him. A year ago his breathing difficulties began, as he silently marched toward his death without a soul knowing for months. While the depth of his issues was unknown, we were hearing him loud and clear as his pain screams began. We just didn't understand. We tried to protect him. To understand. To make doctors understand. And through it all, we made sure he was living the most epic life possible. 

I never knew why my drive to give him such a life was so high- I just had the constant gnawing, the constant feeling that I needed him to live an epic life. We wouldn't hide away from the world out of fear. Instead we would teach- teach him the feel of the wind upon his face during a hike, 
the splash of mountain water from a waterfall, 
the taste of every French fry his heart desired,  
the smell of his favorite sugar cookies whenever he wanted and make sure he experienced everything he ever wanted and more. We made sure the world wasn't scary a place for him by taking him into the world and helping him understand it and live within it. We made sure our boy had a voice so that he could navigate this world and tell the world his story. 
Even in his last days he was learning- to go down to the snack bar at the hospital, pick out his chips, scan it, swipe a debit card and go! He was so thrilled to be independent. 

And now...now it's the quiet. The teaching is done. The joy and happiness has left us. Living an epic life came to a screeching halt.  

Six months has passed and we remain broken, heart broken, soul-torn. The waves of grief are unending and we do our best to just remain above the surface, constantly fighting the urge to let it take us under.

Six months has passed and we still are not used to the quiet. 

Six months has passed and we would give anything to hear the sound of his voice, the feel of his kisses/licks, his nighttime snuggles, his love of all things French fries and pizza and his incredibly brave and joyous take on life. 

Kreed taught us all to truly live, even in his last days. He will forever be the bravest person I will ever meet in this world. When the grief waves come crashing down and sends us spiraling down with the under tow...it is those times I remember our purpose now on this earth- ensuring Kreed's legacy lives on and his life continues to inspire others to find their voice. The only way I can deal with his death is making sure his life had meaning- that he continues to show others how to use their voice and live a no limits life.  
But what I will never get used to is the quiet. This six month anniversary came quietly. Snuck up on me and overwhelmed me. So I remained quiet. Unable to know what to think or feel. But here we are. Six months passed. Our sadness has only grown and the sadness deepened. 

And we continue to live with the quiet, longing for him. 

Thursday, November 10, 2016

Death is Not Beautiful

Death is not beautiful. It's not a happy event in a life. It's the end of a life. And for a mother who loses their child, their heart, and their soul...it's the most horrific pain that would or could ever happen. It's not about the fact that they aren't in pain anymore and are now wherever your religious beliefs thinks they are. Because all a mother wants is their child here with them, not suffering and enjoying life with their family.  But that reality is gone and replaced with a vast emptiness that is infinite and a pain that will never leave you and cause a pain unknown and inconceivable to anyone that has never experienced such a child loss. 

Death is not beautiful. Watching our son bravely fight his illness despite the immense pain it caused him, only to stop breathing and lose his organ function and in his last days and hours, struggle to breathe, hearing that horrible sucking noise coupled with a hoarseness and labored breathing sounds that lets you know the end is near. Watching them lose the ability to swallow and unable to take anything by mouth that once filled their heart with joy (French fries!)  and the life continues to seep out. Your once joyful child is facing the end of life and you are completely unable to save them, shelter them, protect them or keep them with you for even a second longer than their body will allow. 

Death is not beautiful. You hold your child whose life is leaving and it's ugly, horrible, heart breaking and begins the soul tearing. The heart breaking in two. You hold your child and hear the last time their heart is ever going to beat again. Nothing prepares you for this. Nothing comes close to this feeling and living this nightmare. Your child's heart stops beating and yours continues to beat a now shattered heart. 

Death is not beautiful. We aren't happy our child died and satisfied that they are now with "cool angels" (yes someone actually said this to a mother who just lost their son). We are devastated beyond belief. Shattered. Broken. We cease to be the people we were and begin a completely new life forever changed into someone new. Someone who now will live a life with our souls torn, our hearts shattered and a sadness that will never ever leave us and the feeling of our life being incomplete forever. We are angry. We are pissed. We are fucking broken beyond anything anyone can ever imagine. And no I don't care about YOUR feelings or if you think I should speak kinder or think of others or I have grieved long enough or I should be happy they aren't suffering and are with whatever belief YOU have. It's about US and OUR CHILD who is no longer with us, who suffered and died after a braver fight than you can ever imagine or conceive. Your thoughts on his death don't matter and they don't make me feel better. Nothing will. Nothing needs to be said because nothing will touch us or make a difference. Your thoughts that make light of his death diminish the life he did lead and the love he had for living. You want to know what to say to a grieving mother? Nothing. Instead do something. Provide a meal. Provide company. Be there if they want to talk, but don't impart your beliefs on it. Let her vent. Let her scream. Let her cry. Get involved. Do something. If you are going to say something, any comment related to a positive comment regarding death based on your religion is not helpful and actually more detrimental than saying nothing. Or that they aren't suffering anymore and how that must comfort us. No, it's not fucking comforting. He should be here, better and living the life he loved. 

Death is not beautiful. It's not a fairy tale. To you it's not real so you visualize something to comfort yourself but it doesn't comfort the mother who held her child until the last heart beat after watching them suffering for hours, days, months and/or years. Your visualization of what you think death is or was is not our reality. The reality that keeps us up at night, haunts our dreams and become our waking nightmare. Your visualization of what death is doesn't stop our tears from falling and the sadness that follows us day in and day out. Your visualization of what death is doesn't stop the emptiness we now live with that makes us think about ending our own life to stop the pain. Your visualization of what death is...is not reality or even close to it and not comforting for even a second. 

Death is not beautiful. Death is not awesome. Death is not a positive thing in any way, shape or form. And telling a grieving mother who held their child through the end of their life, after fighting for their life and watching them suffer and bravely make it as long as they could, demeans them and their child and the life they lived. We should be sad beyond any sadness ever known, angry beyond any anger we've ever felt before and feel a heart break and soul tearing that nothing will ever heal or be fixed. Because that IS what the death of a child causes. 

So please, for grieving mothers everywhere, stop saying death is beautiful or something positive. It's not the loss of a parent, spouse, sibling, friend or any other kind of loss. The loss of a child is unlike anything anyone can ever imagine and the pain that comes from such a loss in unimaginable and known as the greatest pain any human being can feel. That is death. It's horrific, heart breaking, sad, angry, devastating, excruciating, crippling, torturous, agonizing and not something a parent comes back from. 

Death is not beautiful. My child's life is beautiful. His smile was infectious and his wonderment for the world, the most joyful thing I've ever seen in my life. He was brave through the end and handled his illness with more grace and joy than most people can ever imagine. Most of all he lived and loved his life and didn't want it to end and had a heart stronger than anything this world could throw at him. 

Death is not beautiful. My child's life is beautiful. That's what should be celebrated and remembered.