jedi mind tricks don’t work on days like today.

Diddy,

Tonight, as I was brushing my teeth before bed, the doorbell rang. Standing at the front door was a strange man, who asked if he could borrow some eggs. Before I could answer, and tell him I don’t have butter, sugar, or flour – much less eggs, he grabbed me and threw me in the back of his rusty van that reeked of peed-soaked carpet. He bound my arms and legs and shoved a gag in my mouth. He drove and drove until we reached his rundown shack, smack in the middle of nowhere. As he threw me onto the cold ground, he told me I’d be his bitch forever and ever.

Ok. So that didn’t actually happen. But I conjure up scenarios like these to do my best  to put things into perspective. Because being kidnapped from my own home, shoved into the back of a smelly van, and forced to be a creeper’s sex slave would be just a little bit worse than the day I had today. My attempts to pull Jedi mind tricks on myself don’t work, because even though I logically realize that my day is better than someone’s who is held captive, or someone’s who lives in poverty-stricken, war-ravaged conditions, and is definitely better than someone’s who has the great misfortune of working at craft store for a living – I still hate every, single day here in this life without you.

Today was especially shitty because it was the first day of school. For most parents, this is an exciting time of year – marked by photos of their happy children, on the front steps of their happy homes. For most parents, the start of a new school year is a welcomed change. For bereaved parents, back to school bonanza does an exquisite job of displaying signs of torture everywhere. Over-sized backpacks, school supplies, yellow school buses, car drop off lines. Everywhere I turned, I was faced with painful reminders of more ‘firsts’  that you will never experience. It was one sucker punch after another.

It’s too much sometimes. By sometimes, I mean almost always. It’s especially challenging because, even if I tried, this annual occurrence is not only monumentally painful, it is one which I simply cannot avoid. I am a teacher, for the love of Jesus, Joseph and Mary. So not only am I smacked right in the face by the back-to-school torment; I have to actively participate in the god-forsaken event. Part of my job is to be the ‘welcome wagon’ to all the eager, awkward in the most adoring way, teenagers – with sun-kissed skin, donning their spanking new back-to-school outfits. But, behind every ‘welcome back’ smile there is a floodgate of tears threatening to tsunami my classroom at any given moment.

Everything I wished for is not. And the brutal truth of it burns. It burns new holes in me – it  burns in the old places, that I foolishly thought were repaired, too. It aches in places I didn’t know could ache. It screams in a pitch that reminds me of the wretched moment my life changed forever. This is one of the many realities of being a bereaved parent that no one talks about….milestones – that should have been – which rip open the scabs of buried grief and create ones of new grief – all at once, and all over again.

And, boy, do you fucking bleed.

I know you wouldn’t be starting school this year. In fact, I know your first day of Kindergarten wouldn’t be for exactly three more years. To be precise, it would be in September of 2017. But that doesn’t stop me from imagining what it would be like to be able to take just one picture of you starting school. A toothy grin, or a goofy face. A perfectly matched outfit…that I laid out for you the night before. Or, a perfectly mismatched one…that you insisted on choosing yourself. Blurry or in focus. Sunshine or rain. Our front steps, or the front steps of your new school. I’d take it. Just.one.picture. Because just one picture would have given us five more years together. Five more years to kiss your sweet head. Five more years to hear your voice. Five more years to tuck you in at night. Five more years to memorize every nook and cranny, and idiosyncrasy that make you perfectly and uniquely you. Five more years to watch you run wild and free.

If only I could walk hand and hand with you to your classroom, or as far as you would let me before you wrangled your grip free, and bravely reassured me, “I’m okay, Momma.” If only I could be annoyed by the lengthy back-to-school shopping list. If only I could have held back the tears of wondering how you got to be my ‘big Kindergardener’, as you excitedly rushed into the day ready to partake in the rite of passage children across the land look forward to experiencing. If only I could post your (adorable) picture on my Facebook wall. If only I could race home to greet you, with an excited smile and an enormous hug, at the end of your very first day of school. I would give my whole life to experience just one more minute. Just one minute longer is always and forever the cry of a bereaved Momma.

Every ‘first day of school’ makes me sick. And it makes me sob. I know most people have no idea these thoughts and feelings flood my soul. You never having a first day of school is a distant thought in their minds. It is far too ‘long gone’ to stay in the present. Especially in the frenzy of their beloved children’s back-to-school hoopla. For the rest of the moms, time moves at warp speed. But for a bereaved mom, time stands still.

So here I stand, the world around me paused at a screeching halt, with one foot in the life we once had, and one foot in the life I now have. With a broken heart and a tortured soul…wondering, imagining, longing for all what could have and should have been. Here I stand, with wobbly knees and tired, tired legs – straddling time and space.

And although my life is not as bad as it could be, it is still so very hard to live this life without you.

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I would’ve always packed you the very best lunches.

Stay with me, Sweet Boy.

xoox,

Momma

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She is here. But part of her is elsewhere for eternity.

Paxton, I made it through the fuckwad days in May that I hate so much. I went to work on May 8th. That was  a major accomplishment in it of itself. Last year, I willed myself a million times over to die in my sleep. I didn’t get out of bed until the girls showed up, dug me out from underneath my pillows and held my hands as they guided me downstairs. They kept me busy: setting up new phone/cable service, buying tv’s, taking toys and contraptions you never got to use from the basement to Goodwill, sorting and packing some of your other things and safely storing them in the attic, cleaning out extra-large items abandoned in the garage, organizing copious amount of medical bills which somehow got backlogged in the insurance system, and attempting to make me eat. This was just three months after your Dad moved out, and left me holding a shit ton of bags of shit. Thank goodness for Momma’s girls; they swarmed in and helped me take care of a lot of that shit. Alas, this year I navigated my way to work. While my body was present, my mind was far, far away…recounting every detail of May 8th, 2012. Scene by scene, the reel started playing in my mind. I relived every minute that led us to Dr. D’s, which lead us to the ER, which lead us to the HOT unit, which ultimately lead us straight to the depths of Hell. Right around the time of day you were officially diagnosed, Allison appeared, grabbed my hand and said, “Let’s go.” She knows just how to make Momma listen. Your girlfriend, Ms. Nicole smiled knowingly and said, “Go. I got you. Please go.” And, just like that, two of Momma’s loveliest lovelies saved her heart once again. Allison had just come from Children’s Hospital. Somewhere along the way, I mentioned how much it would mean to me if PaxLove was spread throughout the HOT unit and the Clinic on May 8th. Allison and Erin found a way to make it happen – even though it meant taking a 1/2 day off of work, and exposing their vulnerable hearts to the very place in which you ended your brave battle. They packed your Treat Cart to the brim with ‘happy’, and rolled it right through the HOT unit and right into the hearts of so many brave, little warriors. Have I mentioned how much I love those girls? After work, I met up with Lala and her crew at Papa & Gg’s house. Lala received a “Cold Water Challenge” earlier in the week; she fittingly saved her debut for the most appropriate day. The point of a “Cold Water Challenge” being to jump into cold water, or make a donation to the charity of your choice. Living in Wisconsin, particularly on the heels of a Polar Vortex, finding cold water was NOT a challenge. Willing oneself the mental toughness to take the plunge – a far different story. Lala wasn’t fazed; she said, her super-hero nephew demonstrated far, far more bravery in his (ittsy bittsy pinkie) than she could in a lifetime, muchness by jumping into some cold ass water. Not doubt.  So, into Papa’s lake she went  In turn, she got to challenge three people to do the same.  She challenged her friend Sandy on the east coast, Beth Kille in Madison, and Britta in Cali – to jump or donate $24 – to mark 24 months since your diagnosis. Her battle cry was heard – and despite braving the cold waters, those ladies donated anyway. And they donated $100 each! You certainly have a way with the ladies, lil’ man. Mother’s Day was a bitch to navigate. I spent the day with Lala, the three musketeers, and Nana. Once again, I was physically present; but my heart was a million miles away – searching for you. The day took forever to end. Although I strained to feel you with me, to see a sign, sense a glimmer of your soul somewhere in my surroundings….I didn’t. And despite being in the company of some of the ones I love the most – I felt completely and entirely hollow and alone. It is oft said that being a mother is the hardest job in the world. Well, being a bereaved mother – is unbearable. The countdown is on…15 more days until stupid May is over. (Then I begin dreading the arrival of July.) I am so sorry you got sick. IMG_2098

Stay with me, Sweet Boy…

xoox

Momma

A question. An abyss. A little boy I miss. (Plus, I’m just sad.)

Paxton,

As part of my preparation for the “opportunity-I’m-not-still-not-talking-about”, I was provided an array of ‘assignments’. The purpose of this particular one: encourage deeper reflection about being your Momma from so far away. (As if I need any?)

The query was simple, “A bereaved mother is….”. The question immediately irritated me. Perhaps because someone so revered in the realm of documentary styles and genres: grief, loss, and bereavement being no exception – would ask something so damn dumb. As the seconds ticked by, I pulled out my Warrior-side and began to generate an answer. It’s actually a non-answer; which, in my opinion, is even more fitting. Even better news: it turns out Momma is still spicy enough to accomplish something – merely for the sake of conquering a challenge.

I quickly determined the definition must lend itself to be ever-evolving. It must also allow for the flexibility to reflect the day, hour, or moment I just survived; or the particular soft wave of grief I am currently riding.

A bereaved mother is…

…the woman who has felt pain in every single cell in her body. Literally, from the tips of her toes to the ends of her hair. The pain is indescribably and mercilessly physical.

…the woman who shies away from carrying bags of groceries, or laundry baskets against her chest – especially with the aide of her hip; as doing so most always morphs the bundle into the precise size and weight of her phantom son.

…the woman whose knees have buckled when hearing the sounds of little boys, calling out: “Mommy.” “Mommy!” “Mommy?”…a mommy who will tuck her child into bed – while she will stand, tears falling atop the unused changing table, in her son’s, otherwise barren bedroom.

…the woman whose primal mourning, done only when alone, is still shocked & frightened by the supernatural sound of this mourning. As it serves as a reminder that she is but a wild animal – capable and willing to do anything to protect her young, as well as the fact that she failed miserably at the task.

…the woman entrapped by grief’s incessant state of craze, finds herself pacing the hallways late at night: unable to focus long enough to string two sentences together: intolerant of music, t.v.’s, or voices projecting “too loudly”: sensitive to lights: irritated by a host of other benign stimuli.

…the woman who has accepted that no form of self-induced suffering will suffice in filling the chasm of her loss. Instead she finds herself Googling “…how to construct time-machines.” In moments of lucidness (which sometimes follow) she realizes the depths of her desperation. Instead, she Googles: “…how to initiate the process of self-institutionalization.”

…the woman who wills herself to trade places with her dead child, a hundred times a day – and two hundred times a night. But continues to awaken to a new sunrise – almost always wishing she hadn’t.

…the woman who gives extra generous tips, extra gentle eye contact, extra caring smiles… to the young boy who crosses her path. Despite her keen awareness that he is someone else’s son, she can’t help but pretend – if only for a fleeing moment – that he is her own.

…the woman who knows how to ingest just enough shallow breathes, to keep from throwing up – until she makes it home.

…the woman who refuses to hold another baby – though her arms ache from emptiness – because she is adamant that the last baby she’ll ever hold, will be her own son.

…the woman who wishes she knew it was not an eye infection, or the ‘wrong’ baby formula – just a little sooner.

…the woman who will always, always be consumed with guilt – no matter how many people tell her it wasn’t her fault.

…the woman who will love her sweet boy forever and always…and then a little bit longer.

A bereaved mother is the woman who has a story about a bittersweet survival that does not include a fallacious or contrived “end” to her grief after a prescribed six month period. Her story is a true story of anguish – absent the “happy” ending. Not to say, at some point, she won’t be capable of pure love and joy and contentment. Alas, there is no bypassing the tortures caused by the death of her beloved son. The effects of his absence are perennial, and relentless; the aches – much deeper than the unsuspecting world believes.

Yes, Paxton. Cancer came along and stole everything from us. Everything. The wreckage which has ensued is so grim, I cannot yet begin to speak of it.

However, bereavement, grief, a parallel universe…another lifetime, have nothing to do with how I define the distinct honor of being your Momma. I am the only woman in the world who is lucky enough to be your Momma. Plain and simple: I am your Momma; you are my son. Our bond is far stronger than the grips of cancer…our love is far deeper than the depths of grief.

I will love you forever, and ever…and, then a little bit longer.

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Stay with me, Sweet Boy.

xoox,

Momma

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

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.

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

Stay with me, Sweet Boy.

xoox.

Momma

silence is a sound. you are really gone. and cancer is still a giant asshole.

Hi Diddy,

I made it back to Wisconsin.

Coming home threw a giant curve ball my way. In my absence, somehow the house has grown exponentially larger, quieter, and lonelier. In hindsight, maybe a part of me was half expecting to come in the back door and find a house filled with all things baby boy: trucks, Legos, puzzles, and books spattered about the downstairs; plastic dishes, rubber spoons, and sippy cups in the sink; the iconic sweet sent of Burt’s Bees Buttermilk lotion in the air. I was snapped out of my trance by the time I reached the bottom of the upstairs staircase. By then I knew even if I ran to the top and lunged into your room – I wouldn’t find you happily kicking about and ‘whoo-whoo-ing’ in your crib.

Every so often, I still have fleeting moments when I forget you are really gone. When they happen, my breath is sucked right out of my lungs, and I swear the world stands still: for.just.a.split.second. Each time they happen, I am positive it will be the last time. I’m always surprised and somewhat embarrassed by them. They also scare me a bit because I feel like I truly may be going crazy after-all. But, then I get pissed and realize I am not the crazy one. Cancer is the crazy one. I think about how very unfair and unacceptable it is that you were cheated from a life which held such promise – and that the world was cheated from a soul which held pure goodness.

I wonder if the day will ever come when I whole-heartedly believe, in the very core of my being, that all of this actually happened. I had a son. He was a miracle. He was beautiful. He was perfect. He was funny. He was brave. He was everything I dreamed of…and more. He was the part of me which had been missing my entire life. Then, just like that – he got cancer and died. No matter how long I wait, or how much I beg, plea and bargain – he is never, ever coming back. I honestly don’t know if my subconscious will ever allow my conscious state to fully digest the gruesomeness of my reality. It defies all logic, reason, science and what is right and fair in the universe. Above all else, it is simply too god damn hard. Anyone who thinks I should simply “…accept my reality” and “move on” – as though losing my son, and then the rest of my entire world (in the span of seven months), is merely an unfortunate kink in plans akin to an unforeseen head-wind on a magic carpet ride to Disneyland – can fuck off. Or they can choose which one of their children they will watch get slowly tortured and brutally murdered by cancer…and ultimately die in their arms. In fact, they can do both. Then we can meet for tea and eat crumpets while they tell me all about how beautifully they’re accepting what life threw their way. And I can apologize for telling them to fuck off.

Despite the echoes I hear as I walk to and fro our rooms, accompanied only by the silence swimming through the air, a part of me feels relieved to be home. I am still comforted by being in your room, among your things. I know you are with me wherever I go. I know your things are merely things. I know your room is simply a floor, with four walls, which not too long ago was filled with hope, dreams, and promise. Yet, I also know memories of you and I are more vivid in that sacred space. Whenever I’m feeling especially far away from you – I retreat to your room, if only for a minute, and I feel just a tiny bit closer to you.

One of the thousands of things we didn’t get to do together nearly enough is read bedtimes stories. I read to you every now and again…sometimes in the middle of the day, sometimes when I get home from work, sometimes right before bed – whenever it is I am able muster the ever-elusive grace to choose a book from your shelves and say the words out loud. When I don’t have the composure to use my voice, I sit in the glider and quietly turn the pages as I imagine you there with me. Alas, some of the most special people in your life gave you the same book for your (non) shower gift. They picked it for you because it was one of their favorites. So, I tend to choose it more often than others. I’m a quite certain it is one of your favorites too. Goodnight Moon is on deck again tonight; it’s been far too long.

Goodnight stars. Goodnight air. Goodnight, ‘silence’ everywhere.

Goodnight, Diddy. I’ll look for you in my dreams.

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Stay with me, Sweet Boy.

xoox,

Momma

Three hundred and sixty five days. I still just want you back.

Paxton,

July 2nd happened. It was hard. It was painful. It was scary. It was sad. I did not die. I wanted to. But I didn’t. In fact I spent most of July 1st pleading – to no one in particular – to please let me die before morning. Alas, July 2nd came. And I had no choice but to face the one year anniversary of the last day I kissed your beautiful face and held your tiny, sweet hands in my own. To make matters more difficult – it was sunny, warm, and bright outside. It was as if the atmosphere took happy steroids and some invisible force catapulted me into a vibrant backdrop fit for a post card. Surrounded by quiet air, blue skies, green trees and wide open spaces – I couldn’t have felt more vulnerable if I had tried.

What I had been busying trying to do was shift my paradigm of thinking about July 2nd. For months, I spent a good deal of time and energy convincing myself that pieces of July 2nd hold a silver lining. After all, it is the day you ended your brave and gallant battle. It is the day you stopped feeling pain. I told myself time and time again, July 2nd was your very own personal day of liberation. I did my best to prevent July 2nd from simply being “the day my son died”. To help ensure the focus was not solely on the sadness in losing you – but also on carrying on your fight – I even declared July 2nd as National FU Cancer Day. My family, friends, co-workers, and many other special members of your adoring ‘fan club’ joined my pseudo movement. Despite Momma’s very good intentions, July 2nd proved more heart-wrenching than I could have ever anticipated.

I intentionally spent much of the day entirely alone. There is simply no one left in my life who knows exactly what happened in those final days…and final moments with you. I didn’t feel like faking it with my well-intended and kind-hearted friends and family. Maybe I should have. But, I didn’t. I ran away. I ran away to a place I’ve never been, where I knew absolutely no one. And there I stayed for precisely two and a half (2 1/2) days. I spent nearly the entire time searching for you…and, also searching for slivers of peace and slices of resilience. There were moments when I felt you with me: absolutely undeniably with me. And others when I felt like you were millions of miles away.

Back in Milwaukee, my very best lovelies and some of my closest family threw an epic “Celebration of Paxton”. To no surprise, they went over the top, bonkers to put together a celebration fit for a prince. (You are most certainly worthy of an affair of such nature.) Their ultimate goal: to send you love in such abundance, that you couldn’t miss if you tried. Rainbows and love served as the theme of the celebration. Each of those lovelies painted their nails a certain color to reflect the colors of the rainbow. (Broph even did hers as clouds!) They also made sure to paint their middle fingers gold…extra, sparkly-gold just for you. The extra-sparkly-gold middle fingers were used to send cancer a whole-hearted, united, resounding “FUCK YOU”. They sent that off at the part of the day they were feeling spiciest. The kids painted signs – outfitted with giraffes, balloons, rainbows and most prominent of all: your name. The adults recounted stories of your smile, your wonder, your innocence, your bravery. Music played, libations flowed, laughs echoed, tears fell. At the end of the night, when the moon illuminated the warm, summer sky, each one of those good people sent a wish lantern, full of good, sweet love, up into the sky for you. (***Lala’s was so chocked full of kisses, she wasn’t sure it would get off the ground.) I imagine you watching it all. I picture you smiling when they pulled out their inner-gangsta and gave cancer their gold-sparkly-middle fingers. I hope you felt all of their love, Diddy. Most important of all, I hope you know their love exists for you EVERY day. Not just on the day that marks the anniversary of the day you decided to end your fight.

Towards late afternoon, Momma met up with a new friend. She and I have had plans to unite for months. We met through childhood cancer; which we hate. But, we decided to be friends on our own; which we love. She lost her beloved son to cancer 26 months ago – just before he turned four years old. His name is Ronan. His mommy’s name is Maya. A few months ago, Ms. Maya was kind and gracious enough to invite me to her childhood home to spend some time with her on what she quipped as “…that horrible, awful day”. She explained how she and her family run away on Ronan’s “Death Day” too. The first year, she wanted to get as far away from the place Ronan died as possible. So her family headed to Boston. However, when they got to Boston Ms. Maya had a very difficult time. It turned out her tummy didn’t feel right in Boston. In fact, “…she fucking hated it.” She asked her strong and kind husband, Daddy Woo, to take her to Maine instead. So he did. It was reassuring to learn I wasn’t the only Momma who needed to run far away from the place I was on the day you were taken away from me.

In fact, so much about being with Ronan’s mommy was helpful in getting through the day. She knew all the things I was thinking before I could even get the words to come up my throat and out of my mouth. She talked softly, and slowly. She was thoughtful with her words, and compassionate with her eyes. Ms. Maya took me to a beautiful restaurant which held special meaning to her. When I couldn’t eat, she was unfazed. She simply placed her hand atop mine and said, “It’s okay, Momma. You tried.” After my non-meal, we went to a magical place tucked deep in the heart of the city. We spent nearly three hours there. We walked all about the grounds: sometimes talking, sometimes thinking…sometimes crying, sometimes smiling. The entire time each of us staring far off into space. Although we didn’t say as much, it was obvious what we were scanning the skies for: our “Lost Boys”. It was at this magical place where I especially felt you with me, Diddy. Did you see me? Was that you? (I’ll never stop hating that I have to ask these questions.)

When we parted ways, Ms. Maya and I ended our visit, the same way we started it: by hugging…and sobbing. Hating what brought us together…but, grateful we were brought together. I gather there is a secret society amongst we unfortunate mothers who know first hand the gruesomeness and helplessness – which magnifies the enormity of the loss – of watching your child wage a war against cancer. In each other, we found someone who shares the same rage over the lack of awareness about childhood cancer, and also the same passion in bringing about real change to the world of childhood cancer. We also found a slew of other things we have in common – which are more light-hearted and girlie. But, for now, those are secrets for only Ms. Maya and I to hold. Late in the night, Ms. Maya called to check on me. Among other things, she said, “I’m sorry we are going to have to be friends forever because of this. But we are. I love you.” Thank you for sending her to me, Paxton. (You always send me the best ones.)

So there it is, Diddy. July 2, 2013. It was nothing like I wanted it to be, nor like I imagined it would be. If I had control of any of the major changes in my life – I’d have switched so many things about the day. However, as irony would have it…I found a sliver of peace and a slice of resilience by running off to an unfamiliar place, to spend the scariest day of my life alone, and the rest of the time with a girl, who was once but just a stranger.

I miss you. I love you. I ache for you in every cell in my being.

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Stay with me, Sweet Boy.

xoox

Momma

the weekends are slow. your momma is fast. let’s move to france.

Little One,

“Tu me manqués”.  In French, that translates to “You are missing from me.”  I love that – as it is far more accurate than to simply say, “I miss you”.  (Although, also true.) Today is June 2nd…as of today, you have been missing from me for eleven months. You will be missing from me, every single day, for the rest of my life.

“Tu me manqués.” The French are brilliant.  The French are sexy. The French are in love with love. The French also love bread. Best of all, the French drink wine…all the time.  My friend, Lisa, in Los Angeles may be onto something in telling me to take my broken heart to France.

This weekend was not an easy one. Most of them aren’t. For the first time in my life, I am NOT a fan of the weekend.  (Don’t ask me how I intend to get through summer….which is, in essence, one never-ending-torturous weekend.)  The weekends go extremely slow. Each day is impossibly long – and the nights, well, those are even longer.  As usual, I spent most of the weekend alone. My company basically consisted of my thoughts.  Well, my thoughts and a Milwaukee County Sheriff who introduced himself after pulling me over on Saturday.  “Hi. Not nice to meet you sir. Yes. I know why you pulled me over. You want to make my day shittier than it is naturally.” I was flying, Paxton. But, it was not entirely my fault. There wasn’t another soul on the road…the sun was out…and JT was on the radio. Further, I was driving Nana’s brand new whip. Given it is far sassier than Momma’s car, I couldn’t even tell I was moving – much less that I was going 80 mph. (Yes, I know…a tad excessive.) In addition to accidentally speeding, there was no ‘proof of insurance’ in Nana’s car. So, the friendly Sheriff gave me a ticket for that too.  Truth be told, the Sheriff actually was quite friendly – but only because he found me to be quite amusing.  Ultimately, he felt badly enough that he “gave me a discount”…and only charged me for 19 mph over, instead of 25 mph, which apparently significantly reduces the price of the ticket.  But I’m still mad at him.  Needless to say, despite the fact that Mr. Sheriff and I got along swimmingly, Momma is still out a million hundred dollars, 4 points, and a squeaky clean driving record. To salt the wound, I was racing around town to get to the store to buy food to make a “dish to pass”…for a party I ended up not being able to attend. Quite an expensive dish to pass right into my garbage. But, I did anyway – because, I could care less.

I wonder if they have speed limits in France? I bet they don’t…at least not for moms who’ve lost their only child – especially when she’s en route to a party, which marks the first real plan she’s had in three weeks.  If the Municipale accidentally pulled me over, for accidentally speeding, I bet un policier would’ve given me a hug, a baguette, and a bottle of wine. He probably would’ve told me to screw the appetizer – and advised me to head directly to the party, as fast as I damn well pleased.

So another day, another weekend, another month without you has come and gone. Life without you is so abundantly sad and wholly empty that words will never suffice to explain it.  I know in the very, very depths of my bones that this was not your destiny. You were not supposed to get sick. You certainly were not supposed to die at the age 20 weeks and 1 day.  You were bound for greatness, Paxton. I am your Momma, so by default – I know things about you that no one else in the world could ever know. It’s not their fault that they don’t know; they are not your Momma. Being your Momma is my job, and my job alone.  Part of that job is to follow my instincts….the same instincts that kept telling me something was very wrong with you.  My intuition also tells me that there is something very wrong with many things which have occurred in my life. I don’t care what anyone tries to riddle me in efforts to help make sense of complete nonsense.  I know I am right when I say…all of these “events” are entirely wrong.

lock bridge. paris.

This is a photo of the Pont de l’Archevêché in Paris – more commonly known as the “Locks of Love” bridge. This breath-taking attraction allures visitors from across the globe. Two people, who love each other, inscribe their names on a padlock, attach the lock to the fence on the bridge, and throw the key in the river. Legend has it, that this act solidifies their love as one which will last forever.  Momma needs to get to this bridge. I will get an extra fabulous padlock.  I will write “Momma & Paxton” on one side, and “Danna & Diddy” on the other.  I will lock up our love. I will throw away the key.  It will last forever…and ever…because France says so.

I miss you. I love you.

Stay with me, Sweet Boy.

xoox,

Momma

next time a stranger comes a callin’…hang up.

Diddy,

As one of the worst ‘anniversary’ dates closes in on me – the air becomes increasingly heavier by the day. The closer Wednesday gets, the less oxygen Momma seems to be able to find. I was prepared for this week to be challenging. However, I was not prepared for the challenge to exponentially implode. The bomb that was dropped on me this weekend has officially made the first week of May the worst week of all time – ever. Times infinity. I guess I shouldn’t be surprised by this unexpected blow; history sure has a funny way of repeating itself. Yet I am surprised…but not as much as I am horrified.

I have always lived by the adage that “knowledge is power”. However, I am not sure I agree with that any longer. Maybe there is such a thing as too much knowledge. Maybe ignorantly floating through life, even one riddled with deceit, would prove to be the ‘wiser’ existence after all.

Unfortunately, you only find your limit of how much ‘knowledge’ you can handle after you’ve already learned far too much. You find it in the call that should have been left unreturned, or the meeting that should have been left unattended. You find it in a story that twists your tummy into tiny, nauseating knots – and leaves you with a dry heave you honestly may never shake. You hear this story in its entirety. A story that can’t possibly be real: from the very beginning, throughout the twisted middle, right down to the bitter end. Not even two hundred and twelve Sazeracs could have dulled the blow. You walk away absolutely empty. All you can feel are the shards of a heart that used to beat in your chest. The contents of this story, the “knowledge”, causes those shards to methodically slice away at your insides. You cross into an entirely new plane of suffering – which seems impossible given you’ve already been treading water in a life seemingly determined to drown you in heartache.

Paxton, you were taken from me without my permission. Our little family began to crumble without my permission. The shards of what used to be my heart rake through my soul without my permission.

But learning the intricate details of the most unconscionable story of all time was my decision. I returned that call. I agreed to that meeting. I listened to that story. I choked back the lump in my throat as more and more unimaginable information was divulged. Now, here I sit – with an abundance of “knowledge” I wish I could unlearn. I replay the words in my head over and again. I am unable to bear this load. So maybe, just maybe, knowledge isn’t all so powerful after all. I really don’t know anymore.

Here is what I do know: Losing you shattered my heart into slivers of a whole. Gaining knowledge of a premeditated and soulless betrayal used those slivers to cut the rest of me into pieces. I also know that I will never be okay again. It is simply no longer possible.

Puke my heart out.

I miss you desperately. I want you back. I am so sorry you got sick.

Please stay with me, Sweet Boy. (I need you now more than ever.)

xoox,

Momma