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

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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

18 months. a run. another run. and yo mama!…just wants you back.

Paxton,

I do not like when so many days pass between the times I quiet the noise in my mind and calm the quake in my soul long enough to sit down and write you. Rest assured, regardless of whether or not I write, I am thinking of you, worrying about you, and most of all wishing you were here with me throughout each moment of every day. I’ve come to realize that the times I ‘shut down’ on writing coincide with the times I shut down on feeling. Every morning before I force myself out of bed, I remember the promise I made to you. I remind myself that even though my entire world has crumbled before my eyes – my son is depending on me to keep his spirit alive. Although I almost always want to roll over and sleep until I never wake up, I (eventually) force my feet to the ground, put on a mask (of bravado) and set out to face another day. Truth be told, there have been stretches of time when, despite my greatest intentions and most valiant efforts, it is just far too difficult to execute the charade. The past few weeks have been one of those stretches. Among a cluster fuck of events I didn’t see coming were: July ending, August 6th, and today…August 12th.

You should have turned 18 months old today. The notion of you being a year and a half, and the fact that we’d have spent every waking moment of an excitement-filled, action-packed summer together, made today more difficult than most other “month markers”. I still do something new on the 12th of each month to honor the date on which you were born. So far it hasn’t been anything grandiose or complicated – just new. I simply cannot bypass an opportunity to participate in a novel activity as a way to recognize such a happy and beautiful event. The layman likely remains unaware of my ritual; I don’t talk about it with too many people…other than you, of course. The fact that both of us were born on the 12th sweetens the pot. Besides being totally radical, it also serves as another intricacy of our very own secret society.

Today didn’t start out well. But by mid-afternoon I managed to gather my wits and set out to pay tribute to the 12th. I drove to a new park…far away-ish from our home, to run. At one point during my not-at-all-easy-or-even-kind-of-fun-run, a little yellow finch flew right in front of me. Even though the 918% humidity, a too fast pace, and a heavy heart made breathing nearly impossible, I said aloud, “Well. Hello there, Diddy.” I know it was you. I even got chills all along my right shin again. After my run, I sat on a picnic bench and took in the scene around me. One look into the late afternoon, grey sky was all it took to determine I hadn’t done nearly enough to make you proud. So I stood up, hopped off the picnic bench and ran more. Somehow I managed to go faster and feel stronger that round. Confident you’d be at least sort of impressed with the second wind I pulled out of my ass, I headed home.

Tonight I embarked on a second new adventure. A special, little girl managed to sway me  to support her request for an impromptu stop at the cutest frozen yogurt shop, Yo Mama!. The kids at BCHS have been talking to me about it for months. Your cousins convinced Ms. Allison to take them, along with her three daughters, there a few weeks ago. They’ve been raving about it too. So I finally went. Unbeknownst to me, throughout the month of August a percentage of Yo Mama! sales will be donated to the Ronald McDonald House. Serendipitous? I simply think not. I believe you knew it was the exact place I needed to go to provide a meaningful end to an otherwise not so meaningful day.

The entire time I was at Yo Mama!, visions of you eating a tiny bowl of frozen yogurt looped through my head. I saw streams of yogurt running down your pudgy, but perfect, wrists and dripping onto your t-shirt; as you’d surely have insisted on trying to feed yourself. I imagined diverting your attention just long enough to allow me an opening to swarm in and pick tiny pieces of napkin off your chin…which remained stuck after failed (and obsessive compulsive) attempts to wipe your adorable face clean. I pictured you running over to the crayons and paper at ‘Mama’s Art Board’ to create a colorful, firestorm of happiness before setting back out into the warm, summer night. As I passed the art board, I paused. Seemingly on instinct, I put down my yogurt and drew a picture for you.

I am sorry it’s been so long since I have written. Such a large part of my life is consumed by matters with which I would never burden you. You are my baby and need not worry about such affairs. I will shield you from the heartache the same way I would have if you were here where you should be. I will concurrently strive to be alive instead of to merely exist. (A feat far more difficult than most could begin to imagine.) Yet, I know there are days when I fail miserably. In turn, I fear I leave you deeply disappointed. On those days, and on the good days too, please hold onto this truth; carry it with you in the deepest part of your beautiful soul. No matter where I am, who I am with, or what I am doing – I am always longing for you to be there with me.

I miss you. I love you. I wish you could have had frozen yogurt today too.

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Stay with me, Sweet Boy.

xoox,

Momma