September is National Childhood Cancer Awareness month. Throughout the month organizations all over the country will be GOING GOLD for kids. Those in the fight desperately want you to be aware because most of us were not until our own child was diagnosed.
Before Cole died, I committed to remain in the fight, I promised him and myself I would keep fighting for others faced with this awful reality. I had a lot of grand ideas and plans, still do, and I’m disappointed in how little I have managed to accomplish. I hope to get there, but grief is a bitch. I never imagined how much of me would die with him. So these days I focus my energy on getting out of bed and eating more than once. I don’t know who I am anymore, and the meds I take to try to feel normal mostly make me feel like a zombie. Leaving the house has become challenging. I didn’t expect it to be this way. I miss him so much. I have so many good memories, but the bad ones, they hurt so deep. Many wounds are still healing, some still festering. And somedays I am just paralyzed by pain, the pain of all he and I endured, only for him to be gone now.
I’d have gone anywhere and done anything to save my child. And yet he is not here. After almost 9 years of fighting, 7 hospitals, chemos, radiations, surgeries, immunotherapy, and defying the odds again and again, the day came when he didn’t. And there was nothing I could do. All the years of fighting, and overcoming, didn’t matter. Cole was so BRAVE, so strong, so loving and full of life and potential. He was loved by so many. He had a mama bear that stood up to giants and would have found a way to the moon to save him. A mother who happily purposed my life to doing what was best for his, at any cost. All I wanted from my life was for him to defy the fear I had lived with since his diagnosis at 5 years old. Cole was diagnosed in 2006 with an advanced stage of a rare cancer, and given little hope to survive years, let alone grow up. But I asked that boy to fight for his life and he did, with little question or fear. He believed he would win. And when it came back when he was almost 10, after 3 years gone, he still managed to believe that. He made us all believe it. The statistics didn’t apply to Cole. We lived over 8 years with no guarantees, no illusion of security. Growing up for most kids is a given. For us, it was a goal. And my heart is forever broken we didn’t not reach it. If the only thing I did in my life was be Cole’s mom and see him to adulthood, that would have been enough.
I am grateful how far we made it, and how big and beautiful Cole’s too short life managed to be with the love and help of so many. BUT HE SHOULD BE HERE. He fought so hard for it and he deserved to win.
So as for September 2016, there will be shares of stats, percentages, dollar signs and deficits in priorities, but today I needed to share my truth. And honestly I just don’t know how much good any of it is really doing. Every year more and more people are made aware, more GO GOLD, and millions are raised by well meaning organizations, AND JUST AS MANY KIDS DIE. My Cole is still gone. And I have been on this soapbox for years – even when he was considered a “survivor”. The system is broken! No one seems to understand that parents like me are literally pleading for our children’s lives. I don’t know if anyone, even our own extended family, really got it. There was never any HOPE given. HOPE ALWAYS was born of desperation, of determination, and maybe a little delusion. Hope Always was my defiant response to no hope at all. I tucked the bleak statistics away, and we said HOPE ALWAYS and we believed it. Even until the end. Hope is a choice, and I still have it. I hope Cole’s spirit lives on in the inspiration he gave to so many. I hope his fight helps others to survive longer. I hope so very much to see him and hug him again someday. I hope to learn how to function again and find purpose. So even after it all, I still believe in HOPE. ALWAYS. But I have grown to question a lot of the other things I believed in.
Some don’t understand or make fun of my commitment to positivity. As if exploiting my family’s private suffering is needed to “tell the truth”. Some don’t understand why I didn’t show the graphic pictures of his suffering to make you understand how awful it really was. There is a simple reason for that. Cole could read. Cole had a say. It was always about Cole first and foremost. And he didn’t appreciate unflattering photos or his mom embarrassing him with graphic details of his bowel dysfunction. Cole staying positive was critical, and so in real life and online, we employed positive reframing as a means of survival. And despite all that awful, we also managed to have fun and made the best of every chance we had, because there was never a promise of “when this is all over” (at least none I found acceptable). We were blessed that Cole was so loved, and so many generously helped us make sure he never forget what he was fighting for. Not simply to beat cancer, TO LIVE LIFE.
Cole and I truly were a helluva team but that is mostly because Cole was a helluva kid. Even if the path was tough, he rarely complained, he didn’t say why me, and he never once wanted to give up. Cole just wanted to live. He wanted to learn to drive, make out with girls, play soccer, go to college, fall in love and be a dad someday. And he fought so hard for those things and earned all that and more.
So when I beg you to be aware, when I cite the statistics, share the pleas for funding, and the faces of children fighting for their lives, please remember, Cole’s was an amazing life worth fighting for. Cole is a light still today. He deserved to grow up. He is worth more than what our broken healthcare system had to offer him. He is worth #MoreThan4. He should be here. It is #NotOKAY that he is gone. Please will you help us bring attention to this? For Cole? For my broken heart? For all who love him and all the other families touched by this nightmare?
Want to $GIVE$ to support the fight against childhood cancer? You can support my personal fundraising efforts which go to fund innovative childhood cancer research through CureSearch HERE!!!
#GoGOLD #ChildhoodCancerAwareness #ColeStrong #JackassCancer