gold is the new pink.

Diddy,

September is nearly over. You know what that means, “Childhood Cancer Awareness” month is drawing to a close. I had big hopes for September this year. My ultimate goal remains that Gold:September will soon be as wide-spread as, and synonymous with Pink:October. For weeks, I have been in the middle of writing a post about all which has been unraveling surrounding my plight, and the plight of some of your favorite PaxLovers (LaLa, Erin, Dan, Meg, Allison, and Matt). Everytime I turn around, it seemed as though a new development has unfolded. In the end, I decided my energy would be better spent trying to make a real difference in this fight than to stop, even for a minute, to document my thoughts about how it shouldn’t be this hard to get people to pay attention to childhood cancer.

There are some special people, in high places,  who are paying attention…and joining our fight. One of the accomplishments I’m most proud of are the many different Proclamations that officially declared September Childhood Cancer Awareness month. Mayor Tom Barrett, City of Milwaukee, lead the way. Without pause – he declared September Childhood Cancer Awareness month in Milwaukee – in your honor. Following Mayor Barrett was Steve Ponto, Mayor of the City of Brookfield and David Ament; Mayor of the City of New Berlin; as well as a personal favorite of mine – Dan Vrakas, County Executive of Waukesha County.  

In less officious forms, several communities actively generated awareness as well. On September 20th, PAX Luminary bags lined the streets of neighborhoods all around the Milwaukee area. There were also several individuals who put a twist on the now infamous ALS Ice Bucket Challenge and chose PAX as their foundation of choice. In fact, close to $1,500 was donated to your foundation throughout the month. The timing couldn’t have been more appropriate. 

Unfortunately, there are some seriously disappointing events which have resulted from my efforts to keep Childhood Cancer Awareness on the forefront of peoples’ minds. These unfortunate occurrences have sent Momma into a tailspin. After much consideration, I refuse – simply refuse to give them any god damn air time – for now. For now, Sweet Boy. But as I always tell you, in time, “…shit always floats to the top”.

One thing I must give air time to is the refusal of the Empire State Building to light up Gold for one night during the month of September. The thousands of requests which have been made by desperate, yet hopeful, parents have been denied for some seriously lame ass reasons. The ESB lights up for pretty much every cause out there, but apparently childhood cancer is not worthy enough to be one of them. One night last week, it was lit green to promote the premiere of the  Teenage Mutant Ninja Turtles movie. Promise.

During your treatment, and nearly every.single.day.since, I felt overcome by the overwhelming notion that you were being experimented on like a lab rat. I don’t understand how you had the biggest team in the history of Oncology at CHW, composed of the smartest people across the land, and no one could come up with an answer….not a single fucking answer. It still burns my soul that your death certificate, which I will never open, but inherently know lists your official cause of death as, ‘undifferentiated sarcoma’.  To those who are lucky enough to remain blissfully unaware of the world of childhood cancer, “undifferentiated” loosely translates to: “We don’t really know what kind of cancer your baby has…and without knowing what we’re treating, we couldn’t identify a protocol to treat him. So he died.”

I refuse to turn the other cheek and accept that more strides haven’t been made in the world of childhood cancer. It didn’t take long to learn that childhood cancer seems to be a dirty little secret that nobody wants to talk about. But, if nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and kids will continue have the same grim outcomes. Until things change, I plan on fighting the only way I know how. The way that you  taught me – by being as spicy as possible.

Through my new network of parents, who belong to the “club” no one wants to be a member of, I started to hear the soft roars of brave parents who are trying to accomplish some of the same things I am – only to be met by one brick wall after another. As the month moved on, these soft roars became louder and louder. Eventually it seemed as if the entire world (at least in my corner of the universe) was entranced by this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all Empire State social media pages. The outrage intensified when they noticed their posts about anything childhood cancer related, started to disappear as well as pictures of their children. It was as if, much like our beloved babies, this “dirty little secret” was expected to die and be buried.

The Empire State Building grossly underestimated the advocates of childhood cancer community. We are not merely promoting a Hollywood film, or a front-runner for a Democratic Convention, and we could give a shit about the release of Mariah Carey’s new CD. We aren’t merely advocates – we are parents. Parents who were forced to watch our child fight for his/her life…while we helplessly stood by and watched them slowly die.  We are parents trying to change a very dark world by giving it a beam of golden light to help ignite this change. We are simply trying to give other kids a chance so they can grow up to do the amazing things that I know you would have done.

I want a face-to-face with the heartless bastard who operates the ESB. I wouldn’t need, nor want much of his time. In fact, I’d simply ask him one question, just one:

“What if it were your child?”

Huh?

What’s that you say?

If it were your child, you would want the best awareness, funding, and treatments possible so you wouldn’t have to kiss your baby’s urn every night instead of tucking him into bed?

That’s what I thought you said.

Jackass.

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Close those baby blues and sleep tight lil’ one. If you need me, just call my name.

Stay with me, Sweet Boy.

xoox,

Momma

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A Gold Out, a heavy happy, and a Princess Warrior hug.

Paxton.

This week was chocked full of a shit can of mixed up emotions. By now you know the entire community of Brookfield came together in honor of your bright and beautiful life spark. It all happened so quickly that Momma didn’t have a moments notice to catch her breath, much less time to process all that was unfolding. Unbeknownst to me, Nita and Bruce spearheaded a “Gold Out” to raise awareness for childhood cancer. They chose to have the Gold Out this week because it is September…and because it was the biggest game of the year: the cross town rival football game between BCHS and BEHS. I was brought into the loop after the event had taken on a life of its own. But I’m told that within 24 hours of the suggestion for a Gold Out, BC contacted BE – and both schools were on board, BC vs. BE was named WISN’s Game of the Week, news outlets were calling for commentary, social media was buzzing, t-shirts were ordered, and posters were designed. The crescent tides of what would become a fierce sea of gold, were already swelling around me.

I was honorary captain of the game – and a balloon launch, especially for you, punctuated the Star Spangled Banner. The sweetest moment of all, however, could not have been orchestrated. It occurred shortly before kickoff. The sun, which was just beginning to set, came out for the first time all day. Stunning shades of pink, purple, and best of all…gold illuminated the evening sky. All who witnessed it agree: even the heavens above Brookfield wanted to participate in the Gold Out. (I don’t so much believe in heaven. So, I figure it was you and your flock of angels knocking on the walls of the picturesque fall sky to let me know you were nearby.) Hundreds of gold balloons were released; but I was given a special one. It was a brilliant, rich, purple – to match your birthstone. Bruce decided it’d be easier for you to spot the purple, amongst the blanket of gold, and know exactly which one Momma sent up to you.

The synergy created in efforts to bring awareness of childhood cancer, albeit within the confines of my tiny universe of BCHS, gave me more hope and promise than I’ve felt in a very long time. No money was raised, no promises for change were made. Awareness was generated. And, that is all I have ever asked for.

High off the adrenaline of fighting childhood cancer like a ninja, I made the bravest move yet. I met Emily. Emily is a valiant and beautiful warrior princess who kicked Ewings Sarcoma right in the fucking mouth. She fought the same type of cancer you had for over 13 months, endured 5 surgeries. She travelled between CHW and CHP – to ensure she was in the best of care – throughout her grueling protocol. I first learned about Emily through Dr. D right after your diagnosis. Since then, I’ve kept Emily tucked in my heart. But, I never had the courage to seek her out. In fact, I couldn’t even search for her on Infinite Campus. The mere notion of looking into her eyes terrified me. I still can”t explain some of my fears. Though, I recently read somewhere that grief feels a hell of a lot like fear.

In the meantime Emily silently roamed, like a princess warrior in waiting, throughout the halls of BCHS. All the while knowing who I was, knowing who you were…knowing, most of all, that our worlds would officially collide exactly at the right time. Today was the right time. By my request, Bruce brought her to my room. He did not say a word. Emily did not say a word. I, of course, did not say a word either. Words would’ve only gotten in the way. Instead, I scooped Emily into my arms and held her tightly against my broken heart. I didn’t want to let her go. I felt like she’d be better off in my arms – or in my pocket, for the rest of time. But, I figured her mom would feel otherwise. So I put her down. I took her adorable and innocent face in my shaky hands, and told her she was the bravest little warrior princess. Through tear-filled eyes and a quivering smile she said, “You are brave too.” (Oh, Emily. You really are the best little girl there ever was, aren’t you?) We didn’t talk for long because I couldn’t talk…or say anything of consequence. Yet we quickly realized we are, in fact, kindred spirits. Don’t worry Diddy, I won’t let her out of my sight – poor thing will have me creeping in her shadows from now until the end of time. Thank you for sending her to me.

The high of Friday has sent me crashing so low, that I don’t know how I’ll ever recuperate. The fact that I have to parent the son I waited my entire fucking life for by participating in high school “Gold Outs” to generate awareness of the very asshole who brazenly killed him, is simply impossible to digest. You must agree – my existence is all types of messed up. I do have moments of happiness. But when they occur, I almost always lose my breath. Happiness that exists without you is never guilt free. It is certainly not the kind of happiness I had back when you were here. My new happiness comes with a very heavy price that never goes away. This happiness feels as heavy as the absence of you, which is never far from my mind, heart, body, or soul. This happiness is heavy.

The happiness is almost always accompanied by tears. Tears because all of this is too damn much for one girl. Tears over the thousands of kids who are currently fighting cancer. Tears that so many other parents, like me, are left with a dead child due to this crap shoot of a world. Tears that if you survive it’s only because you got ‘lucky’ in a game of Russian Roulette. But when you lose, you lose big time. There are no “do overs” or second chances. No matter how loudly you scream and cry, or call out your child’s name at the top of your god damn lungs because you think if you scream it loudly enough, he’ll come home. (Not home as in fucking heaven, but home as in back into your arms, where he belongs.) Home: as in where you belong with me and should’ve been with me until I was the one old and dying, not you, young and dying while I sat by and helplessly watched you take your last breaths.

I am so grateful for the Gold Out, and the unyielding support the “Little Community That Could”. But I am not as grateful as I am regretful that this is how your life turned out. It was never supposed to be like this, Paxton. I don’t know what went wrong. I just know it should have been me. Never you. No. Never you.

I am so sorry. I am so, so sorry.

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I miss you. I love you. I hope you caught my purple balloon.

Stay with me, sweet boy.

xoox,

Momma