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.

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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.

Trick or Grief. Halloween was worse than I remember last year.

Little Diddy,

I’m not sure how I got to be 40 years old without realizing Halloween is one of the most child-centered holidays recognized in our society. This is the second Halloween without you…but, I simply don’t recall last year being this difficult. Maybe it’s because last year I was in a deep freeze? Maybe it’s because Iast year I instinctively knew as an 8 month-old, I’d have taken a few obligatory pictures of you in your costume – possibly next to your pumpkin – before I quickly took you out of the over-stuffed charade just in time to avoid an epic melt-down.

As a 20 month-old little guy, I have a feeling you would’ve been far more fascinated in the hoopla of Halloween, or at least the candy aspect that comes a long with it. (What can I say? You got your Momma’s tastebuds!) By now, you’d have identified favorite cartoons, favorite books, favorite characters in your favorite T.V. shows. It’s safe to say you’d have only just begun to express the very fabric of which you are weaved. You’d also have been able to say, “Tweeeeeeat! Peease?” Oh, Diddy, Diddy, what would you have been for Halloween? Besides anything you wanted.

Today I played the game I’m so good at playing. The one where I teleport myself into a parallel universe. In this universe we are together, we are happy, and best of all you are healthy. I find myself excited that our “Fall Fun Day” has arrived. I see myself constantly glancing at the clock, as I can predict almost the exact minute you will begin to stir from your afternoon nap. Once you are changed and fed, I grab the 3 or 4 bags of things you need, may need, and probably won’t need – but I neurotically tote along anyway. (I’m a professional at packing these bags; so we need not discuss how much easier it’d be to leave home without them. Momma just does it anyway.)

I can almost feel myself carrying you to the car and gently placing your bundled dupa safely into your cow-print car seat….which has now faced forward for so many months I have to strain to recall how long it’s been since you faced backwards. My thoughts are periodically interrupted by your squeaky voice excitedly calling out “Twwuck!” Tweee!” and “Pupkk-kin!”. When we arrive at Elegant Farmer, I hoist you out of the car and set you on your feet. Your tiny hand reaches up, and instinctively entrusts a guide in my own as we traverse the man-made corn maze. As the breeze briskly meet our cheeks, I reach down to make sure your hat is all the way over your ears. Moments later, I wipe your runny nose with the back of my mitten. You are blissfully unfazed by the elements; but, I can’t help myself from worrying anyway. I hear the echoes reverberating off the tops of pumpkins as you excitedly stake claim on the one you want to take home. No matter how big, how small, how lopsided or flat-topped, it is absolutely perfect.

After our adventure through the maze – I contemplate a hay-ride. But, not this year. I realize I’ve saved only enough time before ‘breaking point’ to sneak you inside for a caramel apple. I ask the girl to slice the apple in extra tiny pieces…then bite them into even smaller bits just to be sure you can chew them. I don’t ration the caramel. Momma gives you free reign on the good stuff on special occasions. With sticky hands and caramel-stained cheeks, we drive straight to Grammie’s for extra-special loving. Momma passes out from exhaustion on the couch while Grammie steals good loving from you. But first we discuss all things perfect about Paxton…including how much you are talking, how much you seemingly grew just since last week, how you look this cousin or act like that cousin – but agree you are unique in every way. Mostly, we marvel over how irresistibly adorable you are.

Do you know we went to Elegant Farmer once? You were tucked safely away in Momma’s tummy at the time. It was just weeks before being placed on bedrest that we spent a sunny afternoon in October enjoying what was slated to become one of our little family’s Fall traditions. In fact, it is one of the last outings we had before being sequestered in a hospital room, and then in our bed at home for the next 13 1/2 weeks. It’s painfully ironic that in anticipation of the future, which I was certain held so much promise, I envisioned many of the same things that day as well. The main difference being back then my heart was full of hope, my soul full of happiness. I remember laughing at everything and smiling at nothing. I also remember peeing two times in a glorified-outhouse. I was so punch-drunk in love with life, I would’ve been content peeing right in the middle of the corn maze.

I did not go to Elegant Farmer today. Instead I drove through our neighborhood to the big, yellow house on the corner that sits dark & empty. On the other side of my wind shield, I noticed the houses which line our street had seemingly transformed into grave yards overnight. Front yards more closely resembled something from ‘American Horror Story’ than suburban dwellings. Lawns lay blanketed with headstones, skeletons hang from garage doors, and cotton-stretched spider webs float in the breeze. Suddenly the ghosts and goblins, intended to symbolize a childhood wonderland, morphed into a literal haunting…of a childhood lost. I nearly suffocated at the realization that grave yards, headstones and skeletons more accurately reflected my reality of living in the “Land of My Child Died”, than that of a child-centered celebration. A shriek snapped me out of my trance, and also forced me to inhale. It took a few moments to register that it was the sound of my own cry.

I know it’s make-believe stuff. I know my reaction is not normal – even for a grieving Momma. I know this is one of those moments I should never, ever tell anyone about. But I am tired of keeping so many secrets bottled inside. I am tired of feeling like no one else in the universe knows what I experience in the course of a day. I am tired of being a sitting duck every damn time I venture into the world. I am just tired. I know there are a few people who say I am wallowing in my grief, and that I am choosing to remain in a ‘dark place’. (As if anyone would choose one single aspect of my life.) In fact, the grief of losing you is simply a part of my life now. It is not my entire life; but it is a part that cannot be abandoned. So really, what I am choosing to do – is courageously face my truth. Perhaps those people should stop wallowing in judgements and assumptions. Instead they could try to one thing in their lifetime that remotely reflects truth. Or, they could just fuck off.

You could have been whatever you wanted to be on Halloween – and every other day too. I promise I would have done everything in my power to support you in realizing your smallest of hopes and your wildest of dreams. You were bound for greatness, Paxton. I am so very sorry you got sick.

Trick or Tweeeeat, Sweet Boy. I’ll save all the red Gummy Bears for you.

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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.

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

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

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

you can’t stop her. you can only hope to contain her.

Diddy,

You stole your Auntie Kupa’s heart long before you two ever met. I recall precisely the day I realized “it was written”.  In November I was admitted to the hospital and placed on medical bedrest to prevent very premature labor. All eyes were on you. But, Kupa wan’t satisfied. She needed to see for herself that her Baby Blue was in good hands. (We didn’t officially know you were “boy” anything. But, your crazy Kupa insisted she did.) Fielding phone calls was challenging. Providing anyone with an update of any type was impossible; our condition changed like the impending winter wind. So, Kupa did what she does best: took matters into her own hands. She set out on an impromptu trek across the state. The roads were icy, the sky dark, the air bitter. Kupa cared not. She was on a mission. Donning her trademark combat boots, head band, and black leather jacket – Kupa made her grand entrance at WAWM Hospital. With a flash of her smile and a wink of her eye, she managed to sweet talk her way past the Nurse station, right into my “No-Visitors Allowed” corner-suite room. That part isn’t surprising in the least. If there are rules (or laws) to be broken, Kupa is there to do so. Usually with a sly tilt of her head and a mannerly, “Thank you very much, mother fucker.” But that’s besides the point.

Prior to coming to the hospital, Kupa made a quick pit stop to pick up some (unnecessary) gifts for you. Among the lot of items: an array of outfits. In the event you came early, she wanted to be sure you had “…fly shit to wear”. My favorite of the bunch was one you ultimately wore so very often: a green and white stripped, fuzzy, snap up pajamas with froggie eyes where your toes went, and a froggie face atop of your tiny dupa. Following in a close second: a black onesie with a plaid patterned skull on it – complete with matching socks and two different bibs…each with a variant skull and bones.

I didn’t get to spend time with Kupa that day. Moments after her unexpected arrival, Momma was whisked off to a room, which resembled NASA headquarters, for observations. A very long ultra sound, as well as a slew of other tests – all which involved pokes, prods, gels, head lamps, and heat lamps ensued. After an eternity of conferring, questioning, and talking in coded doctor lingo, each member of our ‘High Risk Maternal Fetal Pregnancy’ team concurred “…that is one happy, healthy baby…who is perfect in every way. Our biggest hurdle will be keeping mom pregnant.” (The time the entire world was most concerned about your viability was precisely when you were the safest you’d ever be. The irony of it all now makes me vomit.) Alas, hearing the words “…happy and healthy baby” caused me to spontaneously burst into tears of sheer relief. I knew in my heart there was simply no way I would deliver you early. I refused to let my body fail you.

Before leaving the NASA-like procedure room, I was hooked back up to bells, whistles, buzzers and a computer monitor which tracked your every move. My tummy was lubed and strapped tightly with two heart monitors: one for me, one for you. I’m pretty sure they hooked us up directly to the red-line at the Oval Office too. When we were ready to roll, a small brigade of dear nurses wheeled us back to my room. Lying in the middle of my bed, propped on my pillows, was the most frightening zombie, voodoo, gangsta doll-esque creature I’ve ever seen. The sight of this ghastly thing caused Momma to burst out in shot-gun laughter: a hearty, deep-from-the-soul laughter – which should’ve thrown me directly into labor. Your Kupa is one sick, twisted chic. A sick, twisted chic who has a heart gold once she decides she loves someone. Although we quickly agreed your “Kupa Dolly” was the most beautifully misunderstood doll-esque critter in the world, we tucked it safely away in your closet…just for good measure. Your Daddy said you could have it when you were two. I said when you were 19.

Your Kupa checked on you a few times a week for the next 13 long, nerve-wrecking weeks we remained on strict bed-rest. Naturally, she came to see you many times after you were born…both before you were sick and a host of times thereafter; whether we were in the H.O.T. unit or at home for what always proved to be far too short of a stay. In hindsight, it is so very clear. From the very beginning, nothing could keep Kupa away from her beloved Baby Blue: an unfriendly work schedule, hectic wedding planning, four dogs and a home to tend to, sparse money, temperate weather, a beautiful fiancé, long distance treks, least of all – mother fucking cancer. Paxton, your Auntie Kupa would have given her life to spare yours…her heart to spare your Momma’s. I hope you know by now, you are one of the most cherished loves of her life. Kupa would do anything, anything in this world to protect you, your name, your honor, your spirit.  Simply put, when it comes to her Baby Blue, all bets are off.

Kupa knows of Zombies, ganstas, and tattoos.  She knows of bats, chains, swords, and guns. Truth be told, she knows of all things badass. Kupa knows bad mamma jammas who are so bad, and so jamma that when they dare come into public – she never uses their real names. Coincidentally enough, Kupa also knows her way to Indiana.

Your Kupa tells me she’s heading to a small town in Indiana to tend to some business regarding her Baby Blue. Word on the (underground) street is – she ain’t rolling alone.

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I love you. I miss you. I hope you are safe.

Stay with me Sweet Boy,

xoox

Momma

home is where your lala is.

Paxton,

It’s official. Lala and Uncle Stephen have moved to town! It is hard to process all they’ve done, and undone, in the past four months. Besides the obvious upheaval moving one’s family across the state entails, your Lala is severely allergic to change. All who know her know this to be an undeniable fact. For example, Lala has still not been able to ‘part’ with her sticker collection. She’s been hauling around albums upon albums of stickers for 30 years…yes, 30. She has, however, finally parted ways with her straw-wrapper collection. You heard me Diddy; your crazy daisy Lala used to save the wrappers to the straws she drank her milk with at lunch in 6th grade. (Promise. Ask Nana and Papa.)

Alas, when the shit-of-all-shit hit the fan, Lala could be kept at bay no longer. Without further contemplation, she and Uncle Stephen listed their house in spring. It sold in four days. Without further ado, they began their search for a new home in the Milwaukee area. They found just the perfect one, in just the perfect neighborhood. In turn, your cousins are the new kids on the block, and they will be the new kids at school this fall. Lala will quit a job she loves, and will eventually take one she may or may not like at all. For now, she is living with a friend in Madison, and coming home on the weekends. Uncle Stephen is manning the three kids, two puppy pups – one who cannot walk, and a house in half-moved-in, full-court chaos. (Just another example of Uncle Stephen’s heart of gold…and patience of steel.)

After three sticky, icky days of packing the Madison house and then the most enormous U-haul truck known to man, the Siodlarz family set out on the final leg in their relocation to Milwaukee. Your uncle drove the U-haul, which was pulling another U-haul trailer. (A last minute, “Oh shit. Our stuff isn’t going to fit!” required an impromptu additional trailer rental.) Your Lala was driving the kids and puppy pups in the chocked full mini-van…which, for visualization purposes, was also outfitted with a very stuffed car-top carrier. (Because apparently they still make those?!?) As she made her way from the Beltline in Madison to I-94 towards Milwaukee, an unmistakable message from you emerged high in the sky. In a state of giddy disbelief Lala reached for her phone and called me. She said, “DD….guess what is staring me right in the eyes?!? The most beautiful, vibrant rainbow I’ve ever seen! I don’t know about you, but where I live, not a single drop of rain has fallen in weeks!” I couldn’t get a word in edgewise because Lala was hyperventilating in a half-laugh, half-cry. It didn’t matter. Nothing more needed to be said. We both knew it was you thanking Lala for coming to get your Momma.

A relocation of such nature would be a huge undertaking for any family. But for Lala, it is unprecedented. The realization that Lala and Uncle Stephen uprooted their family, their home, their children and their careers largely in efforts to live closer to Momma is astonishing…and humbling. The love and support they’ve provided throughout the past few years has been unwavering and steadfast. This, however, supersedes my wildest imagination…even from Lala the Wonderful.

Over the past six weeks, I travelled to places both old and new. I set out on that journey in search of peace. To be honest with you, I did not find the peace I was so desperately seeking. However, I’ve come closer to accepting that given all I’ve lost in the past year – my soul may simply never be quite the same. Perhaps the peace I’ve been seeking, the kind that once lived deep inside of me, is not meant to ever live there again. I can’t begin to imagine what the future holds, nor I’m I interested in trying to guess. For now I am channeling my energy into staying “present in the present”. In this moment, I can feel pieces of my broken heart shifting closer together. Your Lala and Uncle Stephen’s unbelievable demonstration of support is the synergy behind this shift. Even if the pieces don’t ever completely converge, I am grateful beyond measure that five very big pieces of my heart are now merely a 15-minute drive away.

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Close those baby blues. Sleep sound. Worry not. We are going to be okay. You and me together…we can do anything, baby.

Here is your lullaby for tonight. It’s in honor of your “One”; your Lala.

I miss you. I love you.

Stay with me, Sweet Boy.

xoox,

Momma

She’s got a way….each and everyone of them.

Hi Sweet Diddy,

I arrived at Britta’s yesterday morning. I can’t remember a time I’ve ever been more relieved to be with one of my most special lovelies. Britta moved to Northern California almost one year ago. In fact, her move – her new job – her trip to India – were all delayed because she stayed in Milwaukee to be by my side after July 2nd happened. Despite all the new wave, unspoken expectations which come with the territory of a woman determined to climb her way to the top of a male-dominated business world – Britta adamantly refused to allow the pressures of a new, big time, high-profile job to call her back to California. In hindsight, Britta’s commitment to us, when we needed her most, is not unusual at all. Her priorities have always been family and friends. Her heart is as giant as it is genuine. So, Britta stayed. She stayed and helped Lala make a slide show and a playlist for your memorial late into the night. She took me, in a catatonic state, and held my hand as I ambled through Mayfair to find a dress for your memorial. (I didn’t end up wearing the one we got that stupid day, because the “most perfect one ever” arrived moments before the very last second. But only after first being trapped in the Colorado hellfire’s. Despite my zombie-like state, irony of such nature was not even lost on me.) The morning of your memorial, Britta came to our house. She sat me in our downstairs bathroom and did my make up and then my hair. When it didn’t seem possible she could do more, Britta executed the greatest challenge of all time. She readily agreed to read the letter I wrote you at your memorial. And, she did so bravely and beautifully…just like you.

In the past year, Britta has taken yet ANOTHER big, fancy, baller, shot-caller job – and moved again. One day, this girl will run the world; or marry Luda and have babies a plenty. Whichever she decides on first. Needless to say, I haven’t had the energy or the courage to make the trip out here sooner. She & I decided it was imperative, however, that I work in a pit stop while on my nation-wide tour for peace. In the planning, we realized this summer marked 20 years of being friends. (Yeph. Britta is old, huh?!?) As you know, Britta inherently possesses the synergy to generate fun wherever she goes. With the realization of our 20 year anniversary added to the mix, I have a feeling this visit is about to be ah-mazing. Britta has plans galore in the works. All of which I’m sure will prove to be a mother load of fun. And I will do my very best to allow the “happy” to seep through. But as you know, sometimes I get so tired and so sad – I feel happiest just sitting quietly in the company of someone with whom I feel safe (i.e. Britta).

I haven’t seen much of the city yet. But I can say with confidence it’s hands-down my favorite of the four places she’s lived since she moved to California five years ago. Upon my arrival, I was met with a package which was delivered to Britta’s house. It was waiting for me on my bed. (Fresh flowers and bottled water were also at my bedside.) I digress. I was mystified because in my grief-stricken + heart-broken haze, I didn’t even know her address – much less figure anyone else would. For some reason, I wasn’t surprised to find the package was from Grace. Knowing my plan to arrive at Britta’s on July 3rd, Grace contacted Britta and arranged for a special delivery. Along with a beautiful card, which I will keep forever and ever, was a “July 2nd shouldn’t be July 2nd” gift: healing-bead bracelets…giraffe patterned, with an angel wing charm to boot. I love the bracelets. I love Grace too.

I love all my special lovelies, Paxton. I’ve always said I have the very best friends on all the planet. But, the past year has proven this to be less of an opinion and more an undeniable fact. Without my most special lovelies, I would not have made it through July 2nd. I would not have made it through May 8th….or February – all of fucking fuck February. I would not have made it through March, April, May or June either. I wouldn’t have made it through many dark days and endless, terrifying nights in the confines of the last year.

Maybe each of my girls was strategically placed into Momma’s life along the way? Perhaps someone far, far wiser than I has know all along that there would come a time when I ‘d simply be unable to push through one more day without the borrowed strength and bestowed grace of these brave souls? Not one time, did the love and support of these girls waiver. In fact, they did not as much flinch.

Paxton, Momma’s girls share a sisterhood so sacred it is almost unspeakable. They know what I need, and what I don’t need, without me having to say a single word. These girls are the truest form of unconditional love. This is why after the shit storm of my life, I still feel lucky and blessed. So very blessed. Was it is you who placed each of these girls in my life’s path? After all, our souls have known each other before this life….and we will know each other long after this life. Isn’t that right? Yes. In fact, as I write this it makes perfect sense; it was you. Thank you so much. I don’t know what I would do without each and every one of them.

Most of all, thank you for being my son.

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Here is your lullaby for tonight. It will forever remind me of the special lovelies you’ve sent me along the way.

Sweet dreams, My-My.

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

Stay with me, Sweet Boy.

xoox,

Momma

big things come in little packages.

Hi Diddy,

The past few days have been filled with activity. I’m still on my nation-wide search for peace. Which makes the “filled with activity” somewhat counterintuitive. That’s pretty typical for your Momma, I guess.

Speaking of activity, I’ve been running a lot. Mostly because I haven’t had a gym I can readily go to for months. So I do ninja type things using my body’s resistance and I run. As for the running thing: it turns out I like to chase people. Not in a creepy, killer way. Rather in an “I can catch you” way. Your Momma has somewhat of a competitive side, what can I say? It’s been doing wonders for my pacing. I have a few different routes, depending on my mood and on my legs. There are hills everywhere, and some days I swear someone replaced my legs with Clay Matthews’ legs. Anyway, on my short, non-hill route, I turn around when I hit 12th street. I’ve been trying to hit 12th street, at 12 minutes for two weeks. I finally did it this morning! I also clocked out the distance….exactly a mile and a half. If you do the math, that translates into an 8:00 minute mile. Pow. Your Momma may be old, but she’s slowly getting back into fighting form. I don’t think I could keep up an 8:00 minute mile pace for 4 miles or 5 miles. Unless of course I was chasing people, or just trying to impress you.

While I run, I am always on the lookout for signs of you. It seems like I receive the best ones, when I am not trying so hard to find you. Yet the other day, I stumbled upon one. Literally. On the side of a dilapidated, vacant building, there was a painting. It was a simple compilation of wild flowers and colorful butterflies. Within the collage, in blue paint, were the words, Baby A. It took my breath away. My entire pregnancy you were Baby A – short for Baby Andrews. We didn’t want to find out if you were a boy or a girl until your grand reveal. For the record, I knew you were a boy. In fact, I was so confident that I secretly bought a few boy clothes before I was sentenced to bed rest. (You never got to wear those outfits. It breaks my heart whenever I look at those in particular.) You will always be my sweet Baby A.

The Baby A sign pales in comparison to the run where I found the most amazing thing. (That’s for Ms. Britta. She can’t stand the word amazing. In fact, her crazy daisy self sent me a text at some absurd hour to tell me ‘amazing’ has now surpassed ‘moist’ and ‘luscious’ on her most hated word list. You can agree that’s a pretty serious claim.) I digress, I was half-running across a street when I spotted an object lying in the middle of the street out of the corner of my eye. Sophie! I pivoted, lunged forward, and scooped her into my hand within half a second. I turned in what seemed like 112 circles. No one was in sight. Not a soul. I didn’t know whether to laugh or cry. So, I did both. I clutched Sophie in my sweaty, shaky hand, and carried her with me for the rest of my run. The entire time, my mind raced. “The little-little who dropped her must be so entirely sad.” “I have to find the little-little.” “Paxton would be so happy if I can get her back to her rightful owner.” I went back to the scene of ‘Rescue Sophie-Two’ at the end of my run, half expecting to find a frantic mom scavenging the streets for her. I envisioned the relief on her face when I handed Sophie-Two to her, and planted a kiss on her little-little’s forehead. But, no one was there. With a heaviness in my heart, I took Sophie-Two home. She has been hanging out with Giraffey and Little-Tiny-Bear ever since. Until you whisper exactly the right thing to do with her, Sophie-Two will stay with us. We will take extra special care of her.

In even more exciting news, I connected with a long lost friend a few days ago. I haven’t seen her in 16 years; but that hasn’t stopped her from being one of your ‘Super Fans’. Little Cary has demonstrated stead-fast support for you, in ways both big and small, since last May. Truth be told, my dear, kind, generous friend just happens to have one of the biggest hearts on the planet. After learning she lives in the area, I decided to go out on a limb and send her an email. Unbeknownst to me, LC had just gotten home from work and was going through her mail and email. That afternoon, she received a letter from the museum asking for her annual pledge. LC threw the letter in the garbage. As, she had already decided in lieu donating to the museum, this year she would be donating to the zoo – specifically to the care taking of the giraffes; in honor of you! Moments after her “donation rotation” decision, she opened her email and found the message from me. She is confident this chain of events was not serendipitous. I have to agree. Without pause, LC and I had solidified plans to reunite the next morning. Upon sight, she wrapped me in her arms, and hugged me good and long. Just like that, it was as if no time had passed since we were last together.

A day of non-stop chatter, evolved into dinner, and rolled right up to night-time. LC has something big in the works to help us honor you, Paxton. That woman may be “little”, but she packs a punch. I know she will do whatever she can to lead the “Charge” in helping Momma put childhood cancer on the map. There are one (or two) other very little things she’s trying to help Momma secure as well. All in good time, Diddy. Your Momma has certainly learned how to exercise patience in the last two years. Nonetheless, I am so inspired by LC’s fierce passion for you – that even if nothing materializes, my heart can smile knowing you have another Super Mom who is intensely committed to helping you live on, and to seeing that childhood cancer is put firmly on its ass.

This afternoon, I am heading out to spend the weekend with LC’s family. Somehow, their hearts are even more beautiful than their beloved, adorable son. I am looking forward to being surrounded by familiar faces, warm love, and good souls. I will be sure to keep you posted on the things we get ourselves into. LC already has one plan for Momma. She is able to get me into one of the most beautiful and serene Hindu Temples. She thought it may provide an opportunity to feel closer to you…perhaps, find a sliver of peace to put inside my heart. Peace. It is precisely what I am in search of after all.

I carry you with me everywhere I roam.

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

xoox,

Momma