those who say idiotic things. those who behave(d) badly. and others i’m done protecting.

Diddy,

Today started out better than most. In fact, one may have described me as somewhat smiley – nearly optimistic – given the exciting opportunity which has been presented to me throughout the past 72 hours. Then a well-intended person, spewing idiotic things from her face, came along and sent me straight into my sauce-zone.

People say stupid things to me about you all the time. In fact, at least once a week I find myself refraining from slapping the shit out of someone. Their stupidity is almost always rooted in a benevolent place, and I know this. It doesn’t make it any easier to listen to them drone on about you being “…an angel with wings”, “…still with me wherever I go”, or my personal favorite “…walking with our heavenly father”. All it does is send me into an internal zone where I chant my battle cry, “Hitting is wrong. Hitting is wrong.”

Alas, with 100% conviction this woman said, “Danna…the worst part is the loss of potential…” “Right?”

Honestly, this is perplexing. Potential what? Potential night-time snuggles after bedtime stories? Potential comforting hugs to soothe bumps and bruises acquired as you learned to walk, then to run? Potential belly laughs from watching you happily dance about the house? Potential first day of school pictures? Potential teenage angst? Potential orthodontist bills? Potential numb-butt syndrome from sitting on bleachers all weekend at basketball tournaments? Potential background checks of potential girlfriends? Potential tears as I drove you off to college? Potential Mother & Son dance at your wedding?

Yes. Somebody actually quantified your untimely and completely unfair death as a “loss of potential”. To refer to you as potential, an amorphous glob of fuel to be used up over time, is mind blowing – at least to me. I suppose it’s possible to think of humans this way: everyone is merely stored-up “potential” until his or her future is realized. But it seems remarkably insensitive to refer to a dead child this way. In fact, it seems completely devoid of human emotion. How utterly complex the human landscape that someone would attempt to empathize with me in a way that reflects no fucking empathy whatsoever.

Why does grief turn so many people into giant bags of idiot? Even those who have experienced grief can be morons. I look back at my life and I wonder how remarkably stupid I’ve been. I’ve certainly made many, many stupid choices. (I’ll save those for another day.) Maybe there should be a required class on how to avoid being insipid when you encounter a bereaved parent? And people should have to take it every other year, just to make sure they remember the good stuff.

To be fair, there are people who didn’t turn into idiots – who did exactly as they should have done. If they didn’t know what to say, they said nothing. They hugged me. They held my hand. They sat next to me. They told me to brush my hair and put on lip-gloss. Others burrowed their heads and hearts to avoid the specter of death: as if it may cast its shadow over their home, creep inside while they sleep, and steal their children. Even those people did not invoke my ire. Yes. Some people disappeared from my life altogether. I certainly should not be surprised by their dismissal. It is still exceedingly painful, all the same. (Wouldn’t it be great if we all had the good fortune to pick and choose who and what we cut out of our lives once our plot-line became less than idyllic? I’d delete you being diagnosed with cancer at 12 weeks and 3 days old….then dying in my arms less than eight weeks later. Hands mother fucking down.)

For the record I, too, know how to avoid terrors associated with your death. I know how to close my eyes just the right amount to make the entire scene become blurry. I know how to find the mirrors in a room before making eye contact with them for fear of witnessing the visage of encroaching sorrow. I know how to answer questions, by using questions – to avoid verbalizing feelings I cannot bring myself to utter out loud. I know, I know, I know.

I could numb out the pain entirely by allowing my heart to harden. I could run for Door #2, assume a new identity, and escape this life altogether. I could convince myself I’m content with contingent ‘promises’, fragile commitments, and faux happiness: all while selling myself the low-budget simplification that your death “…happened for a reason.” I could let grief win. But, I won’t. That is what a victim does. That is not what a Momma does.

At any rate, the nice people who say idiotic things will no longer catch me off guard. Moreover, I will no longer expend one.more.ounce of energy grinding my tongue against the sharp bone on the roof of my mouth until it bleeds, or squeezing my bicep at just the right angle to make it separate from the bone as a means to refrain from blurting out the truth. In turn, protecting those who simply do not fucking deserve my protection. Starting five minutes ago, the only person I’m going to actively protect in this entirely mixed up world, is you.

I digress. I am guessing this woman wondered about your potential because she genuinely gave a shit…which is also why she was so insistent I heard her (idiotic) thoughts. I’m guessing she was trying so hard to reach out and connect with me on this one point that she missed her target and accidentally stabbed herself in the eye.

If people care, reaching out is enough. I don’t need anyone to try to make sense of your death, or to explain what they guess I might be missing about you. Paxton, I don’t care even one little bit what potential people think you may have realized. The only thing I ever wanted you to be…was alive.

IMG_0989

I miss you so much. I love you even more. I hope wherever you roam, you are happy.

Stay with me, Sweet Boy.

xoox,

Momma

P.S. Sorry for all the swears. I’ll put extra quarters in your coin jar before I go to bed tonight.

Advertisements

Turkey. Tears. And a whole lot of Thanks.

Paxton,

Today is the day the entire world stops to do what we should do all year round…pause and give ‘thanks’ for all of the blessings in our lives. There are people who believe positive thinking and gratitude are the answers to life’s aliments. I agree. A positive attitude and posture of gratefulness can help many bleak situations. But I guess gratitude doesn’t come naturally when you are grieving the loss of your only child – and the loss of everything else you loved too. All the positive thoughts in the world aren’t going to change the fact that you are dead. All the positive thoughts in the world aren’t going to bring my little family back together. All the positive thoughts in the world certainly aren’t going to fill the empty chair at the Thanksgiving table tonight.

This is not to say I don’t actively engage in positive thinking. Today alone I had many positive thoughts. I am grateful for the fact that most people will never have a Thanksgiving where their 7-year old niece holds their hand under the table and all-too empathetically whispers, “I miss him too, D.D.” Nor will they know of a toast which is finished with their 4-year old nephew innocently nodding his head while sincerely proclaiming, “Here’s to Paxton’s spirit all around us!” I’m also thankful most people will never have to shamefully throw out an entire side-dish of cranberries, because their tears fell into the bowl before they realized they were standing over it – silently sobbing.

Bring to the table a cornucopia of blessings and I’ll bring you my infinite pain. Let’s put them both on the empty chair where you should be…21 months young…squishing pumpkin pie between your chubby little fingers and putting it in your adorably sweet face.

Asking me to focus on my blessings and not recognize the fact that you’re not here, is like telling me to be grateful I am still able to breathe – even though the atmosphere has run out of oxygen. It simply isn’t possible to be one or the other. That being said, just because I continue to grieve doesn’t mean I am incapable of being grateful for the other blessings in my life. But it is not one or the other. I miss you with every molecule of my being; I would give anything to have you back. Yet I am still deeply grateful for the three little souls who will sit with me at the table tonight. I am thankful beyond measure to have Lala & Uncle Stephen in my life, and also living so close to me. I am grateful for my parents – who continue to provide unwavering love and support through each step of this, the very darkest, walk of my life. I am thankful that I truly do have the most devoted, strong, beautiful friends on this side of the universe. Who, even though they think as much, have still never said, “We told you so…“.

I am grieving. I am grateful. The latter can’t cure the former, and the former doesn’t negate the latter. As a bereaved Momma, I have unwillingly learned the delicate art of holding infinite space for both. My new life is a heartbreaking juxtaposition of contradictions. Just as I possess both the immeasurable love of having you, and the immeasurable pain of losing you. My heart is broken because you are gone, but it is also full because you were here.

This slideshow requires JavaScript.

There is never a moment I am not thinking of you…wishing you were here with me, worrying about you…and eternally grateful that you are mine.

I hope you are happy, Little Turkey.

Stay with me, Sweet Boy.

xoox,

Momma

a spicy monkey. a high-jacked computer. and my day is made.

Sweet Diddy,

One of my girls at school needed to take her test at my desk today. The other 15 places to sit in my classroom simply wouldn’t suffice. While she was at it, she made herself right at home. As she sat at my desk she ate my pretzels, used my hair brush, tapped around on my computer, noticed my Pandora was open, and created herself a new radio station on my account. Why not? When I busted her, I pretended to be mad. Like all my ‘kids’, she knows I (mostly) pretend to be mad at them. Disappointed is all-together different. Mad? Well, that almost always just doesn’t happen. First of all, these spicy monkeys keep Momma’s heart beating. Secondly, they need more love than most others in the world. Moreover, they deserve even more love than they need. And like I said…they keep my heart beating.

It’s going on 5:40 p.m., and I’m still at school. As you already know, Momma need not rush off to the gym, or to the grocery store in order to be home in time to let Lucas out and/or to make dinner….much less to pick you up from day care, get you fed, bathed, and ready for bed in time to snuggle up and read a bed-time story – or three, before tucking you in for a peaceful night’s sleep. Instead, I take my time perfecting innocuous tasks, before aimlessly venturing down familiar hallways, through familiar doors, to a familiar parking spot – straight into an unfamiliar life.

As I contemplated whether I would go to the gym, or just run extra-long when I got home, concurrently further avoiding the transition into a new life I never wanted, a song began to play through my SMART Board. Instantly entranced by the lyrics, I closed the 38 windows I had open so I could see the name of the song and artist. (No. I didn’t do what normally functioning people do, and save the work which I was perseverating over perfecting in the first place. It’s fine. I’ll try again tomorrow.)

The tears which fell from my eyes have already left salt-marked stains on my completely lame, but also completely free, GO ARMY! desk calendar. I instinctively know they will serve as an unlikely source of comfort in the upcoming weeks. As I will recall this moment with heightened precision. For it is one of those rare times…that I know you are with me.

Thank you for helping my spicy monkeys love me. Thank you for helping them embrace my broken spirit, my shattered heart, and my many, many flaws. They are of your most brilliant and treasured gifts yet. Thank you for sending me this song – compliments of the spicy ones, who take the liberty to high-jack my Pandora account, much like they have taken the liberty to high-jack my heart…because they know damn well, it’s the only way in anymore.

Here is your lullaby for tonight. It’s from Momma…and one of her spiciest monkeys.

My arms should’ve been fierce enough to have kept you safe.

Stay with me, Sweet Boy.

xoox,

Momma

20 months. 40 years. even mother nature knows we belong together.

Diddy,

Yesterday you would have been 20 months old. I am getting better and better at knowing what you’d be doing as each month marker comes along. I never wished to be more blissfully ignorant about anything than I do about all things babies and toddlers. There isn’t a day that goes by that I don’t get lost in thought imagining all that you would now be able to do. For starters, I hear you talking in two or three word sentences. “Diddy is fly.” “Momma is sleepy.” (But also fly.) I see you completing block puzzles, or pointing to your favorite things when we read: like Lowly the Worm in your Busytown books, or to the moon on each page of “Goodnight Moon”. I picture you proudly helping Momma with little tasks like, “Go get your jammies.” “Put your trucks away.” In addition to all the innocence and wonder you were robbed of, I am also tortured by the things I can’t envision. Mostly by the fact that I can’t picture what you look like anymore. Every so often when I’m somewhere in between asleep and awake, I see you. Only for a flash…before you turn into the baby I last kissed at 20 weeks and 1 day old. I have every inch of you at that age memorized: from the top of your soft head, to the tips of your teeny toes. But I want to see you now, at 20 months old. I want to see you without trying. I want to hear you without straining. I want to hold you without imagining. I want to kiss my 20 month old son and have you kiss me back – with as much teething-induced drool as possible. Instead, I can’t even say for sure what you look like. Because you died when you were just 20 weeks old.

On top of your ‘should have been’ 20 months old day, I turned 40 years old. How it’s remotely right that I have already lived for 40 years, when you didn’t even get to live for five months is so far beyond my comprehension, I nearly puke every time it passes through my consciousness. Alas, in honor our “Secret Society Club” I wanted to do something special to pay tribute to this particular 12th. It met the criteria of being something new, it is also something that will eventually become old. I finally got (the most preciously radical) tattoo. In turn, “your place” on Momma is now officially reserved forever and ever. Just as it should be. No one else will ever call the nook of my arm all the way to the crest of my shoulder their own. All who look will see my Sweet Boy has staked his claim. They will see your name. They will see a symbol of you in fight and in flight. They will see a peaceful warrior transitioning to a warrior at peace: as he passes through the faintest rainbow…and heads straight to the highest layer.

The only tolerable part about October 12th was the weather. It started out cloudy and chilly. A perfect backdrop to stay in bed a little later than planned to see if it would be the day that squeezing my eyes extra-tight would transport me back to my old life. If even for one day. No such luck. When the rain began to strum against my bedroom window, I was convinced the world was as sad as me; so I decided it was safe to face the day. I got to the gym and back before the happy-ass sun decided to come out and toy with my mood. However, it turns out Mother Nature is in my corner after all. And she’s manic too. A few hours later the skies reverted to a dark grey, opened up, and dumped out an unyielding and unforgiving rain. It was a true shit storm. And it made me feel much better. However the greatest birthday gift (outside of you back in my arms) came moments after when a faint rainbow emerged high in afternoon the sky. It was there momentarily. But it was there. You were there.

You and I have always had our very own secret society. Nothing will ever change that; not even death itself. Tattoos and rainbows aren’t needed to prove our love. Our love far supersedes markers and magic. It transcends the parallel universes in which we exist. It is the rare kind of love that truly does last forever and ever. Of this I am sure.

That being said, you must wonder why there are times I’m overcome by such extreme sadness that I stand in the shower just so the water can drown the sound of my sobs and the screams of your name. Or how there can be moments when I’m overcome by such anger that to prevent myself from breaking things, I bury my face into your blanket and scream…to no one at all, that I just want my baby back. I miss you so much that parts of me I never knew existed hurt. And I miss being your Momma (the way I should be) so much that the parts that don’t hurt…are simply numb.

I am doing my best to navigate these unchartered parenting waters of being a Momma from so far away. I am terrified more often than not. I am sad. I am lonely. I am mad. I am so very, very tired. But I am also without another choice. So I push onwards. And I hold onto hope that in the process, I am not letting you down.

1348098844663554

I miss you. I love you. Worry not, little one – Momma is right as rain.

Stay with me, Sweet Boy.

xoox,

Momma

a defense lawyer stops me in my tracks. because he knows you.

Paxton,

Tonight I ended what was a very difficult week with a “not-so-happy” hour with two of my lovelies from BCHS. I wasn’t in the mood to be there, but familiar with their persistence in integrating me into the world at-large, I knew it’d be easier to join them. So I did. I made it to about 6:30 before I was ready to leave. As I approached my car, a man parked next to me quickly popped his head out from the backseat of his car where he was putting his child in a carseat. He said, “Excuse me. What does your license plate say?” I knew he was talking to me; but I froze – speechless and paralyzed. He continued, “Does your plate say, Paxlove”? I studied his sincere face and steadfast eyes as I faintly replied, “Yes. Paxlove.” He excitedly persisted, “Is it for Paxton? The baby? The little Peaceful Warrior?” I almost collapsed onto the goddamn pavement.

Before my legs had a chance to give out, he broke into a 40 yard dash in my direction. As he jogged towards me he yielded his “Paxton” bracelet in front of him like a white flag. Meanwhile my friend took over the talking part and proudly proclaimed that I am your Momma. Once in front of me, he put the bracelet an inch away from my eyes and exclaimed (repeatedly) that he wears everyday. He went on to explain how he learned about you and your brave fight. He said he attended PaxFest and donates to your foundation. Most importantly – he told me how he finds daily strength and inspiration through your brave soul.

As I attempted to absorb the scene unfolding around me, I noticed his wife had come out of their car and was now standing just steps behind us. Her hand was over her mouth. Tears were streaming down her face. As our eyes met, we innately stepped towards each other and hugged tightly. Through a tear-filled voice, she told me how you changed the way she mothers her son…and that she marvels at how I find the strength to continue to live without you. These kind-hearted people said so many endearing things to me. All of which I will hold close to my heart for many, many moons to come. The dad ended the conversation by telling me he is a defense attorney and that whenever he is in trial, he rubs his “Baby Paxton” bracelet to find strength and clarity. For he is reminded that whatever he or anyone in the court room is experiencing, or has experienced, pales in comparison to what “Baby Paxton” endured.

The entire time this couple talked to me, I literally did not utter a single word. In hindsight, my inability to speak makes me want to punch myself. I should have taken out my wallet and shown them pictures of you. And told them how everyone who was lucky enough to be in your presence noticed how peaceful (and beautiful) you were. I should have shared with them how (before you were sick and stopped feeling hungry), you would stop mid-suck while eating your bottle, smile right at me – and then happily resume eating. Or let them know your favorite CD is Coldplay’s Rock-a-bye Baby, and that you loved when we would dance around the dining room and sing, “I like to eat, eat, eat apples and bananas.” I should have relayed the stories of how you’d stare into Mr. Cow mirror and “Ooouuuooo!” so fiercely at the site of your adorable reflection that the entire house would erupt in laughter.

On top of failing to tell them any of the many things that make you incredibly special, I deeply regret that I didn’t think to ask them their names. While I hugged the husband, I did manage to eek out the words, “Please don’t take that bracelet off.” (He assured me that he wouldn’t.) With the exception of one simple sentence, I stood mute as two strangers told me how you have changed their lives. In exchange, they allowed me to embrace them as though they each contained a small part of you. I am sorry if I hugged them too tightly. I am more sorry I didn’t tell them about any one of the multitude of things which make you my uniquely perfect Paxton.

Very early this morning I was overcome by one of the greatest moments of despair I have yet felt. I don’t entirely know why. I guess this roller coaster of grief, bereavement, or grief-that-interrupted-the-initial-fucking grief will never make any sense. I do know that I literally begged you to send me a sign if you were still with me. Anything to prove that despite the emptiness in my stomach and the hollowness in my heart, I am not entirely alone in this world.

I believe with all of my heart, you sent that man to me tonight. You rescued me from the abyss of grief which I must consciously ward off from swallowing me whole. More than anything in this entire world, I would give anything – anything – to be the one saving you. It should have been me. Never you.

IMG_0752

I miss you. I love you. I’ll look for you in my dreams.

Stay with me, Sweet Boy.

xoox.

Momma

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.

This slideshow requires JavaScript.

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.

IMG_0581

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.

tumblr_lqemln8gfw1qzkhmuo1_500_large

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