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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Bolt up! And, Notorious Big may have let you hear swear words.

Paxton,

Remember many months ago when Momma told you I was working on having something extra special occur in your honor? Well, today is the BIG DAY! With big help from one very little woman (with a heart of GOLD), I was successful in making this notion a reality. Surprise! The San Diego Chargers readily and graciously accepted my challenge to lead “charge” against childhood cancer. Today these giant men, with even larger hearts, will give a roaring, thundering voice to thousands of Little Warriors across the land. Today the Chargers will make an unprecedented move as they generate awareness of childhood cancer throughout the NFL.

The Chargers will run a full-page ad in the Chargers’ “Tailgate Times” featuring the Paxton Andrews Foundation. Throughout the game, messages relaying the chilling facts about childhood cancer will play on the jumbotron at Qualcomm Stadium. Slides highlighting the Paxton Andrews Foundation will roll on monitors around the stadium for the entirety of the game. Best of all, the Chargers will name you, Paxton Bowe Andrews, their Honored Hero for today’s game against the Dallas Cowboys.

When the Chargers heard about your beautiful soul and your brave fight, they wanted to help in any way possible. They asked what I most wanted. As always, I said, “awareness”. Yet, I never anticipated their support would be this grand. Though I am not sure why I ever underestimate what can happen when you are involved. Your spirit is so bold and bright, not even an entire NFL organization can help but to fall hopelessly in love with you. The Chargers are a great organization; clearly owned by even greater people. My appreciation is well beyond what even a million words could express.

San Diego Chargers

Incidentally, while I was running at the gym this morning “Going Back to Cali” came on my XM radio channel. Hearing Notorious BIG always makes my insides smile. But given the stir currently going down in Cali over you, I couldn’t help but think you and Biggie worked together to send me that one. (I’d prefer if Biggie would shelter you from his oft vulgar mouth. But, I’m hopeful he gave you ear muffs during the extra-naughty parts.) Sensing you all around me, and with Biggie lacing his lyrically genius beats throughout my soul, I ran faster and farther – and felt stronger – than I have in years. The only thing missing was hydraulics on my treadmill…and of course, you.

I am so very proud of you, Diddy. Enjoy the game. Bolt up!

Stay with me, Sweet Boy.

xoox

Momma

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

19 months. today wasn’t gonna be easy…then cancer came back.

Diddy,

Today began much like everyday. I got out of bed, walked down to your room, and began our morning ritual. I whispered the many hopes and dreams I have for you: some old, some new. Each at the forefront of my mind as I face the dawn of yet another day without you. I told you how much I loved and missed you, and explained yet again how I wished a million times over that we could trade places. I shared many other secrets in the spaces in between. All the while searching and scanning the world on the other side of your bedroom window – – just in case today would be the day you’re outside waiting for me to come and rescue you. Then I ambled into the shower, got myself presentable, and set out into the ‘real’ world. (Also known as my ‘fake’ world.) Though I don’t recall the commute, I arrived at BCHS: parked in the spot reserved for me 13-ish years ago, entered the set of doors I’ve pulled on a million times over, navigated the hallways in which I’ve surely worn a pathway, entered my classroom, switched on the lights, landed safely at my desk…and was met by your beautiful face smiling right at me. Then, I exhaled.

I have become very adept at eluding eye contact with the 1300 students which fill the hallways at any given time throughout the school day. I avoid looking too deeply into the eyes of babes who, despite their individual stories and struggles, do not know anything about the dark, grim, gruesome world in which I live. Part of my avoidance comes from sparing myself from the pang which stings my soul when the realization strikes that you will never be in 9th, 10th, 11th or 12th grade, worried about a test, excited about a girl, donned to the nines for prom, decorated as a stud player on the basketball team…the list goes on. The other half, is sparing the kids who should they look too closely into my eyes, will surely end up getting sick and dying. But mostly my avoidance stems from the fact that I know I live in a parallel universe. I realize that no one in that building could ever come close to understanding the aforementioned – let alone a teenage kid. None of those teenagers: with the exception of two, little, lovely Lancers.

I met the older of the lovelies three years ago when she was a freshman. She is a spicy monkey. Spicy enough to be one of my students. Spicy enough to run hurdles to boot. It was during track season that I got to know her best. At the time, I was going through IVF treatments to conceive you. She and her family were rallying around her little brother who was in the final weeks of his victorious battle with brain cancer: medulloblastoma. He endured and triumphed over 56 rounds of chemo and 28 rounds of radiation. I remember the day she brought celebratory bracelets into a team meeting. The night before, her brother “rang the bell” at CHW. (At the time, I had no idea how intimate I’d become with the notion of one day watching you reach up to tug the string on that same bell.) I recall silently sobbing in the coaches’ office as I watched the video she made of her little warrior brother ringing the bell. My tears were those of sheer joy…the sobs I blamed on the assortment of drugs surging throughout my body. In retrospect, I wonder if the world was silently trying to prepare me for matters of which I wouldn’t have understood, nor heeded, had they been emblazoned in neon, flashing lights.

Today one of my closest BCHS friends, who apparently pulled the short straw, sat me down and delivered a brutal message. The little warrior boy, who rang a bell over three years ago, just received the crushing news that his cancer is back. His cancer is back in the same spot as the original tumor…at the base of his brain. His cancer is fucking back. How is this even possible?

One of my new-world survival techniques is compartmentalization. In fact, it is the single most effective tool in my arsenal. I simply cannot allow my real world to overlap with my fake world. That being said, I don’t do “cancer-talk”, “Paxton-talk”, “personal-life talk” while I’m anywhere other than at home. On top of the collision of my two worlds, the nature of this news shoved me right down my ‘isolate to survive’ rabbit hole. The net result left me paralyzed. As tears began to push against the backs of my eyes, and vomit started to creep up my throat, I merely uttered, “This is not good. This really is not good.” Bless her heart and soul, my sweet friend gently replied, “I’m sorry, Danna. I am so sorry.” And the exchange of those two sentences continued on a loop, until I walked away…and “deep six-ed” into my rabbit hole.

Many hours later, and in the safety of my own space, I called my friend. I asked her to make sure this family knew that I will do anything I can to help them – anything at all. I am fully and wholly committed to their every last need. No matter what it is, when they need it…I am here. The offer stands infinitely. She promised she would make sure they knew. And she did.

I couldn’t allow my commitment to this little warrior boy to be my ‘something different’ on the 12th of this month. I forced myself to do something else. It ended up being horse-shit because my heart, which is smashed into 12 billion pieces, couldn’t muster up anything meaningful. Plus it was hella late in the night. For that, I apologize. For committing every last resource I personally have and that your Foundation has generated to this brave and beautiful boy, I do not.

I still have a hard time wrapping my head around my reality, which I know is also the reality for so many other parents across the land who have lost a child. It’s a reality you never get to escape from or take a break from. It’s a reality that is tremendous and cumbersome to carry around – and the load never gets any lighter. But, I don’t ever want my reality to be another parent’s reality. One blonde haired, blue-eyed boy is one too many. How many more need to be spared? What do I need to do to stop cancer from stealing another child?

Please help this little warrior boy. Please help Dr. Jogal, Dr. Firat, Nurse Renee and the other all-too familiar cast of characters at CHW who compose his Dream Team find a way for him to (once again) defy the gruesome odds. Please help him find his inner-warrior strength and reign triumphant over medulloblastoma, a PNET sarcoma, which has yet again declared war inside his sweet, innocent body.

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I miss you each and every day, I truly do. But today I’d especially have done anything to have been able to rush home, scoop you into my arms, and plant a kiss atop of your innocent, beautiful head…as I thanked the angels everywhere for letting you be born healthy and happy.

I am so very sorry you got sick. I will never, ever stop asking why. I will never, ever stop fighting either.

Stay with me, sweet boy. Stay with the little warrior boy too.

xoox,

Momma

Really, Mr. President? And, maybe Nickelodeon should get cancer.

Diddy,

Today I am filled with anger, disgust and disappointment. I know I am not alone in my reaction to the news far too many moms and dads around the country received today. The news came in an email from a man named Barack Obama. Though I am not naive enough to think he actually took the time to generate the message. My best bet, he took just enough time to direct someone in his office to draft a standard kiss-off to all us childhood cancer parents. It was his attempt at explaining why he vetoed our petition to turn the White House Gold for one day during the month of September.

To add insult to injury, the message used the very statistics we are railing against. Mr. President, and anyone else who still does not have a clue: the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, the only thing that is clear to me is that we have grossly different interpretations of the word “progress.”

The icing on the shit-cake, he/she/whoever wrote the lame ass email was brazen enough to throw in a plug for the Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like you…if, of course, you hadn’t already been killed by CHILDHOOD CANCER. However, that is not the point. This was NOT the time, nor the place, to advance his political agenda. This was his chance to listen. I can’t help but wonder what his stance would be if he and Michelle received the crushing blow that Malia or Sasha had cancer? Would that be enough for him to be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos? What is also disheartening is that pink light bulbs aplenty, needed to illuminate his tax payer supported home in October, have surely been purchased and are sitting in waiting. Because, you know, boobs matter more than kids.

The White House should be GOLD. But more importantly, kids with cancer deserve more funding from our government. How can we make this happen? How much more blood needs to be shed? Are people really not aware or are we just plain being ignored? I am doing my best to help spread the awareness. I feel like childhood cancer is being talked about, everywhere; but I realize that is likely because it’s the world I live in now. The bottom line: We didn’t ask for much, Mr. President. We simply wanted some fucking lightbulbs changed out for one day.

On the heels of Barack’s ballsy move to send the message (loud and clear) that he simply does not care about kids with cancer, The Empire State Building also DENIED our application to light up GOLD for one day in September. It will, however, turn Orange in honor of Nickelodeon on September 16th. Gag. Puke. Poop. (You should be ashamed of yourselves, Empire State Building. But, my guess is you are probably too busy watching Sponge Bob Squarepants to give a shit.)

This is an outrage and beyond insulting. None of this makes sense to me. I simply do not know why more people are not screaming from the rooftops…and/or jumping off of them…over the vast injustices in the plight of being a child with cancer.

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That is enough for now, little man. Thank you for loving me even when I am saucy and sassy. Thank you for not giving up on me – despite the fact my efforts to carry on your fight are being met by brick walls and empty promises. (Don’t worry, Momma will never stop fighting your fight or honoring your legacy.) Most of all, thank you for being my son. Even though days like today make it hard for you to realize: you bring my soul more happy than sad and my heart more joy than pain.

Stay with me, sweet boy.

xoox

Momma

Your spark has spread across the pond…to the wild, wild west, and everywhere else too. But I’d rather you were asleep in your crib.

Diddy,

My little Diddy Bop…how I miss you so. More oft than not, I don’t quite know how to begin my letters to you. Perhaps the only normal part of my existence is the abnormal feeling I get when I realize the only way I can communicate with my son, who was killed over a year ago, is through letters he may or may never read. Good thing for you (because as my child, you have obviously found a way to read these) I’ve never been one to conform and do what others perceive to be normal.

Once I begin writing to you, I feel more normal and most certainly more at peace than I have in days. At the close of each letter, I tell myself, “…just write him one note every day….no matter the reason…no matter how profound or inconsequential the message”. But, most days I am still not brave enough to creak open the lid of “Paxton’s Box” and allow myself to participate in the single most vulnerable act: expressing my feelings through the written word. When it comes to writing to you, there are more days than not when it is simply too difficult to navigate the vastness of my grief, especially in total solitude (except for the companionship of my laptop and Sir Giraffey).

Each week I receive notes, cards, emails, Facebook messages and letters from complete strangers, long-time friends, long-lost friends, and your dearest earth angels who prefer to remain anonymous. Each correspondence serves as a tangible reminder that people, both near and far, are thinking of you, loving you and…holding you close to their beautiful hearts. The notion that I am not the only person in the universe missing you at any (and every) passing moment, often is the very thing which allots me the will to survive another day without you. While I do my very best to at least acknowledge I have received them, I simply do not always have the strength to do so. Ironically, it is typically the messages which mean the most that replying to proves most challenging. (I know it’s ass backwards; it’s just the way my world works.)

This past week, I received two messages which affected me very deeply.The timing could not have proven more critical. Today, with their borrowed strength, I will tell you about the messages and the women who sent them.

The first came from a woman all the way across the pond – in London. She learned of your story through Facebook. By her own admission, she avoided reading any of my Warrior Momma entries when she stumbled upon them via friends’ of friends’ shared posts. She said while she initially told herself it was merely an unconscious choice, she now realizes it was more likely out of fear. She called herself one of the stupid – naïve, uneducated, blind. The other morning, Jessi confronted her fear. She clicked on one of the entries. And as she says, her world was permanently altered. Jessi ultimately blew off an entire day of work to read every entry. She relays that she read every single word, and listened to every single song. Then Jessi wrote me. Among many other things, she said, “…so I’m writing to say ‘thank you’ for introducing me to your Paxton and to tell you that your mission is working because for every person, like me, who moves from the unseeing column to the light there is one more person to help fight the fight. Like so very many people around the world, I am thinking about you and Paxton. I am joining your fight.”

Serendipitously, Jessi is running a Survival of the Fittest event in London in November for an England-based charity called CLIC Sargent. The race benefits children with cancer and their families. Admittedly, the race meant less to her yesterday than it does today and it will mean more tomorrow as she continues to think about more ways to fight. For every pound donated to her race, Jessi will personally donate an American dollar to the Paxton Andrews Foundation. Very best of all, Jessi asked if she could run this race in honor of you! Of course, I said “YES!”

The next message came from a woman, named Bree. She lives a little closer to home – only 2,000 miles away in Arizona. Bree sent me a link to a song, named “How?” by Regina Spektor. She explained that while she never had the good pleasure to meet you, and hasn’t seen or spoken to me in over twenty years, she thinks of us daily – most especially when she hears this song. She also said her life has been changed by your story…and she promised to carry you in her kind heart for the rest of time. I promised Bree I’d put the song on your special playlist; the one I play for you on days, like today, when it’s exceptionally difficult to be so far away from you.

Bree has a baby boy of her own. He was born about a year after you. He is perfect. He is adorable. He is happy. He does not have cancer. Although she’s not said as much, I get the distinct sense Bree’s appreciation of her beloved son has been enhanced through your brave fight…through your beautiful soul. l just have a gut feeling about this. But, you know how I feel about trusting my instincts.

Paxton, I am so grateful that you continue to find ways to send me signs and messages of love and strength. I am extremely proud of the way you use your life spark to change peoples’ lives in ways so profound they cannot even explain…and evermore proud that you you allow your soul to shine so vibrantly, that even complete strangers can’t help but to fall in love with you…even when they are afraid to. But, never mistake the fact that I would trade the awe and wonder of of these intangible forces to have you back in my arms where you belong. I would far rather the only people who knew your name lived in the confines of my (now empty and sad) home. Simply put, I want you back.

Here is your lullaby tonight, sweet boy. I promise I will never forget one memory. Let’s close our eyes and find each other in our dreams.

I miss you. I love you. I hope you are happy.

Stay with me, sweet boy.

xoox,

Momma

Father’s Day sucks. Walgreen’s sucks more. Cancer sucks most of all.

Diddy,

How is it possible that two whole weeks have elapsed since I last wrote you? I guess so many things have been unfolding in my life, that the days continued to pass by without me really knowing which end was up. Despite the buzz of activity, the ache of your absence has not dulled – not even a little bit. You are the first person I think of before my eyes open each morning, and the last person I think of before I fade into a semi-slumber each night. I think of you at least one hundred times in between sunrise and sunset as well.

The end of the school year has arrived; in turn, summer has officially commenced. It makes my throat tighten when I spend too much time thinking about how we should be spending summer. Can you imagine how super-duper excited we’d have been to be together every moment of every day? No work for Momma. No day care for Diddy. The Dynamic Duo would have spent our days ruling the world. Even though you are not here physically, you are with me wherever I go.  I have always heard that having children makes you see the world in a whole new way.  Nothing could be more true. My entire universe was altered when you came into my life, and made me a Momma. I view the world in a far different way than I knew possible. I have slowed down to better absorb my environment; I pay attention to the wonder around me; I notice little things, and ignore big things.  Most of the time, I think about how you would interpret what I see, hear, and smell. I picture you smiling at passer-bys, waving at puppies, pointing at airplanes. I see you running through grassy fields, and tiptoeing through warm sand. I imagine your raw excitement and genuine curiosity in new surroundings. I revel at the notion of your innocence in everything you touch and everything you do. Wherever I go, I carry you with me Paxton.

Yesterday was Father’s Day. Like most ‘holidays’, or notable days, in my head I remove the word “Happy”. It was not a “Happy Father’s Day”. Let’s be real and call it what it is: “Father’s Day sucks ass when your only child is gone.” Maybe I should embark on creating a new line of greeting cards for bereaved parents? Every time I see a card for the “Happy” holidays, I want to tear them in half and stick a piece of chewed gum inside. Our little family should have been together celebrating the absolute honor and sheer joy of Daddyhood.  Alas, we were not.

I spent a big part of the non-happy day replaying and rehashing Father’s Day last year. We were discharged that morning. As with all “discharge days”, equal parts excitement and anxiety filled my bones.  You were wearing your Ado(red), red, onesie from the Gap, and you were extra smiley. It was as if you knew that it would be your first and last Father’s Day with your Daddy, and you made sure to turn on all your charm.  In hindsight, it makes perfect sense: that is quintessential you – the ‘Peace Bringer’.  Father’s Day marked the last time we would leave the hospital with you in our arms. Father’s Day also began the stretch of time that Walgreen’s pharmacy began to further torture you. Because they are the biggest asshole fuckwads of all time, they filled a prescription which they had no business, and no knowledge, in filling. They did so merely to do what they do best: make money through preying on consumers who are in dire need of their of over-priced, inaccurate, ill-preppared prescriptions. (Don’t believe me? Do some research.) Going into detail will only further incite me, and make my stomach turn inside out and come up my throat. Just know this, I still haven’t stepped a pinkie toe into one of their establishments.  Despite their Monopoly build-a-store-on-every-major-street-corner-in-America business approach, I swear to you, I never will again. I still do my fake spit…twice….every God damn time I see a Walgreen’s – which is a lot because as I said, they’re on every blasted corner in America. I get the most satisfaction, however, when I run down Oklahoma and do an actual spit onto the driveway of the very Walgreen’s that royally screwed up your prescription. In fact, I start to save up all my spit once I pass under 794…as soon as I hit the property line of that wretched place, I hock the biggest, gooey, wad of runner’s spit right onto their punk ass driveway. I hate them.

I digress, last year on Father’s Day, Erin and Dan helped you and I set up a surprise for your Daddy. They stashed a cooler full of Bloody Mary mix, vodka, hella fixings, a 12-pack of beer, and snacks to boot. In hindsight, my behavior was glaringly unacceptable. We were enjoying a Bloody Mary – and cancer was raging throughout your tiny body. When I think of how oblivious I was, I want to throw my head against a wall until I’m unconscious. I will never forgive myself, Sweet Boy. Never in one million years. I can’t imagine the pain you endured every single hour of every single day. I cannot fathom the agony that filled your little bones and tiny limbs. You couldn’t say, “Momma, my head is pounding. My tummy is sick.” or, “Don’t hold me that way, it makes my arm hurt. This way makes makes me dizzy.” All you could do was whimper and cry…and let Momma fumble all around trying to guess what you were so desperately trying to tell me. I’m sorry I guessed wrong sometimes. I’m sorry I made you eat when you were nauseous. I’m sorry I covered your eye with that patch. I’m sorry I put Biotine in your mouth, and made it hurt worse when it didn’t help at all. I’m sorry for all of this Paxton.

I will never stop asking, “How?” “Why?” “When?” “What if?” I just will not. I don’t care what anyone says. I won’t “get over” losing you.  How could I? I am your Momma.  Protecting you was my job. I failed miserably.  Nonetheless, I am intent on hunting down your killer – and taking it to task. The good news is, I recently acquired a partner in crime. I met her through cancer and this blog. She is a bad ass, and she says the F word even more than I do. (Promise.) Two Mommas are more powerful than one; especially us two. Together, she and I are going to change the world of childhood cancer. You wait and see little boy.

Thank you for being my son. Thank you for coming to me. Thank you for letting me know you are, in fact, still with me wherever I go. You are the best little boy in all the world.

I miss you. I love you.

shot through the heart.

Stay with me, Sweet Boy.

xoox,

Momma

Stuck.

Diddy,

I am stuck. I am downstairs on the couch, Daddy and Lucas went to bed nearly four hours ago. I am tired; in fact, I am exhausted. Once again, I am stalling the inevitable close to another day. Any sensible person would take one look at me and tell me to ‘go to sleep’. They would likely add some sage advice, such as “…you’ll feel better with a little sleep”, or “you’ll feel better in the morning”. I cannot sleep. And, no, Soothsayer, I won’t feel better in the morning. If you want to know the truth, chances are I will feel worse. For the love of licorice, I am a Bowe; I have never liked mornings. I think I may have a severe allergy to them. (Ask Nana and Papa, they can attest that this has been a life-long condition.)

I have been dreading the entire month of February…since the month of July. Despite my pleas for some omniscient power to freeze time – or better yet, turn back time – the world has continued to rotate on its axis. Without my consent, the sun has persisted to rise and to set. The long days, and even longer nights, have compiled into weeks; and the weeks have have proceeded to roll into months.

Alas, here we are…February 5th. Exactly one week away from your 1st birthday. Given the preoccupation I’ve had regarding next week, one would think I would have found a way to better combat the darkness which now completely engulfs my insides. I now know for certain, that not even kryptonite would prove powerful enough to ward off the grief of childless mother.

In her recently released ballad, Pink has seamlessly managed to compose my love song to you. She has done so far more articulately and beautifully than I would ever be able. That being said, here is your lullaby for tonight. May the lyrics wrap around your heart and the message soothe you into a peaceful slumber. May you know in the deepest part of your soul that although a minute would not nearly be long enough – Momma would give anything to have just one more with you.

I hope you are safe. I hope you are warm. Most of all, I hope you are happy.

Stay with me, sweet boy.

xoox

Momma

Go for Gold.

We are so close! Let’s not stop now. Let’s not stop at 25,000. Let’s blow this out of the water. Do it for my sweet boy. Do it for the 7 warriors who ended their fight with cancer today. Do it for the 46 children who will be diagnosed tomorrow. Do it … because it’s the right thing to do.

It is time for The White House to join this fight. It is time The White House lead the way in bringing awareness to Childhood Cancer. It is time The White House light up GOLD in the month of September.

This should have happened a long time ago. I’m still astonished how simple awareness has continued to slip through the cracks. Did you know George Bush Senior, had a daughter who died from Leukemia? I believe she was almost 4 when she ended her fight. Heartbreaking, right? You would think the personal devastation of the most powerful man in the world would have been the impetus in putting childhood cancer on the map. We had not one, but two President Bushes who could have done something brilliant…something huge. But as far as I can gather, not much was done. So here we sit now, begging for a petition to get the signatures it needs in hopes that The White House will say YES to lighting the White House GOLD for the month of September. This is not something we should have to beg for. I begged for the life of my beloved Paxton. Begging for signatures just seems silly, but, I am not above it.

I hope President Obama, takes a stand on this cause. I hope the First Lady gets involved too.  (I love you Michelle – but kids are not dying left and right due to childhood obesity.) Do kids with childhood obesity have to go through harsh chemo treatments meant for adults? No, they do not.

Yes; I am begging for signatures on a petition I don’t even know if The White House will approve. Here I sit, at 3:30 in the morning, unable to sleep – tears streaming down my face not ONLY for the loss of Paxton, but for so many other beautiful warriors as well. All I am asking is for Childhood Cancer to be as recognized just like the other cancers out there. All I am asking for is for the color GOLD to be recognized just like the color PINK. Just make it equal. Why isn’t it already?

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

Thank you all who have signed and shared. Please continue to share with anyone and everyone.

Tears of Gold

(I love you Paxton.)

Warrior Momma