This is not the way it was supposed to end.

Loss. Death. Pain. Heartache. Grief.

This is not the way the journey was supposed to end. The Courage of Conley Duke was not supposed to end like this. Honestly, it was not supposed to end at all. Your hear of those "other"children, or "other" families, that deal with the loss of a child. You grieve for them, and pray for them, while subtly thinking that will not be how our story ends. There is no way that our story will end with our child dying. Yes, he is sick, and yes, he has lots of medical intervention to stay alive. But, that won't be us. It won't be my child. It won't be my family. It won't be me. I'd by lying if I said I was never one of those mothers who said that under my breath, or even out loud to my husband. That was them - not me. I remember thinking how I could not imagine what they are going through, and even how it is possible to lose a child. Well, now I know. Because I've joined that club. That club called child loss. It's a club I never wanted to join, and one I can never leave. I don't have to imagine anymore. Because it was my child, and now it's me. 

Everyone said that Conley was strong-willed, determined and a warrior, like his parents. That he was unbreakable. Conley gave us hope. He made us believe that anything was possible. He made us think that miracles were real and that prayers could be answered. Even during our darkest times, he pulled through with flying colors. Somehow, he pulled through. And that's what he did. Conley gave us a desire to push though the chaos; to just hold on a little bit longer; to sacrifice just a little bit more, because the rewards were there; in the end. Every painful moment and sacrifice ended with happiness and joy. Every single breath of advocating for him, and with him, made us stronger and ready to take on the next battle. Conley made us understand the true meaning of surrender and unconditional love.

Conley surpassed all expectations and survived things that doctors said would knock him down. They even said "CDC" for "Conley Don't Care." He had illness after illness, but he didn't care. Despite all of his medical complexities, he still smiled. He still laughed and waved to all the nurses and doctors. He still lived life without understanding or caring about any of these medical labels attached to his name. The Conley we knew got admitted to the emergency room for bleeding out in his belly with minutes to spare, and woke up the next morning waving and clapping for his surgeon, ready to take on the world.; ready to have major abdominal surgery; three times in a matter of days. We all know this picture. THIS was the picture that gave us hope and made us believe. He was the one who rolled around the hospital in his red car, waving to all the visitors and bringing joy to the other grieving families. Conley was the warrior we all wanted to believe. He was the one that amazed us all by his presence in the room even though he could not eat, drink, crawl, walk or speak. He taught us about being apart of the journey even though everything he did was operated by a machine. He was a warrior; a warrior that survived. He was smart, social, strong, and charismatic. He was supposed to be the one that gave way for others to believe this was all possible. That all this medical hype was worth it because the "end" would be so great. 

But, the story we imagined and expected somehow changed courses. Fast. Really Fast, but then again, really, really, painfully slow. And then, it was over. The story was over. His warrior story was over. He no longer survived surgeries or beat the odds. There were no more jokes about how Conley did not even realize he just had back to back major abdominal surgery. No more miracles or believing that he could get through it. No more prayers to be answered. Everyone hopes that their child will be the one that proves everything and everybody wrong. For a while, we were on this high that he was it; that he was the one that could make it. Conley had everything to be that child. Sigh. Big sigh. Then came the end of his journey. This is not how his story was supposed to end. 

And then I think that maybe that would be too easy. It would be too easy to believe that he would physically conquer everything; that he would warrior through every moment. That he would just defy all medical complications and science. Maybe that would just be silly. And too predictable. And we all know that Conley was not predictable. He wrote his own rules; even from the very beginning. And honestly, there are other "Conley's" out there. Other children with kidney disease or cancer who are surviving every day despite the multiple obstacles thrown at them. They are the miracles that show that a community of prayer works and invite others to continue believing in something that is bigger than themselves. There are other children defying all the odds and battling the science what says they should not survive. I thought that was Conley's story; our story, but it's not. That story ended.

We all know that Conley was strong, determined and fierce, but that was not all he was. He was also wise, selfless and honest. He was real, and raw, and true to himself. Everyone always said he was an "old soul." So, while maybe the story did not end the way we envisioned it, or how we had hoped, this is my time to rewrite the end to his story. (off topic, but a key part of processing trauma is to be able to rewrite the ending - another post). Maybe he was meant to be more than just a physical being on earth defying the doctors and someone to push through the hard times. Maybe he was meant to be someone who taught us about life and death. To teach us that sometimes letting go is harder, yet wiser, than pushing through. Maybe he was meant to tell us that sometimes, medical intervention can do more harm than good, and it is okay to say no when you feel you have had enough; and that no one has any right to judge your decision unless they have walked a day in your shoes. That everyone is fighting their own battle even if they are smiling and waving. Maybe he was meant to teach us that sometimes pushing through and praying for a certain outcome may not be worth it to the person who is actually the receiver of surgery or multiple medications. Maybe his story is also to teach us that each day is a blessing, and at any given moment, life could change; fast; really fast, so hold on to those small moments. Maybe he was supposed to teach us that labels do not have to mean anything. Just because you have labels associated with you, for one reason or another, it does not mean you have to BE that label. Labels do no have to define your behavior. Maybe he is supposed to teach us that we are so lucky that we got to write the end of his story, to be with him and savor him, for a few more days. Maybe his ending is supposed to teach us all about selfless, unconditional love. And maybe, just maybe, his story is supposed to remind us that tomorrow is a new day. And to let whatever you did today be enough. And just because it's a bad day, doesn't mean it's a bad life. 

The list could go on...and while this was not the way the story was supposed to end, that doesn't mean that it can't still be great. And it doesn't mean we have to remember it that way. We can remember it any way that we want. This is how I chose to remember his story.

"Know that no one can save you but yourself. You are the heroine of this sad story. You are the one who gets to decide how, and if, you’ll survive this. You are the one who will figure out a way to survive the sleepless nights, and the endless days. You are the one who will decide if and when you’ll find a purpose again that means something to you. You are the one who will choose how you’ll live with the pain. You are the one who will decide what you’ll to cling to, what will make your life worth living again. You, and only you, get to decide how you’ll survive. No one else can do this for you." - Angela Miller