we became them. now became then. and, nothing would ever be the same.

Diddy,

Today marks five years since my life was split into two – marked by a radically profound ‘before and after’. May 8th marks the day you received the crushing, mind-numbing diagnosis: childhood cancer.  As the words fell from the doctor’s mouth, my universe stopped from spinning on its axis. The ground disappeared beneath me – my vision and hearing simultaneously lost capabilities. I could literally feel the air being sucked from my lungs, and my heart being ripped from its cavity. In hindsight, my soul instinctively knew what my mind was struggling to process: nothing would ever be the same.

Despite the chaos that consumed my every fiber, I recall each and every moment. I’ve played the reel, frame by frame, in my mind countless times. Sometimes it plays in slow motion, and I find myself trying to will my energy ‘just a little harder’ to transport myself back in time, so I can jump in; stop the production; and carry you safely back to bed. Other times, the reel speeds ahead on fast forward. It plays without warning – and without permission. No matter how hard I try, I’m not able to turn it off, nor am I able to turn my eyes away from watching the gruesome details. Over.  And over again. If it weren’t for the weight of the grief I carry inside me and the hole in my heart, the exact size and shape of you, most of the time I still wouldn’t believe any of this is real.

I have endured an immeasurable  amount loss, pain, guilt, heartache and despair throughout the past five years. Still, all of it combined pales in comparison to the pain you suffered. I haven’t yet been able to forgive myself for failing to protect you and for failing to save you. I doubt I ever will. All these days and nights later – I cannot wrap my mind around the fact that I didn’t figure it out sooner. I am sorry. I am sorry. I am so very sorry.

The wreckage of this motherload of all shit-storms has brought with it many beautifully complicated lessons. (Juxtapositions seem to be a mainstay in this life of love and loss, my darling. But, more on that later.) One of the most important take-aways being how precious and fragile our time is in this world. We are all one phone call, one car accident, one unexpected discovery, one diagnosis away – from being robbed of time. I wish more people would realize this without having to be faced with a life-altering event, before it was ‘too late’…before they became ‘one of us’. Perhaps, we are the lucky ones, Diddy? For, I’ve come to believe that one is not able to love with true abandon, until faced with the uncertainty of time. In loving you, I’ve been blessed to have experienced love in the purest, deepest, most enduring way.

I loved you from the moment I first saw your faint heartbeat on the ultrasound machine; to your first breath, until your last breath. I’ve loved you every moment thereafter. I never experienced mother love, until you came into my life. Alas, the motherlove I hold for you is different than most others: because it’s reflective of the resolve, determination and grace you showed throughout your short time on this earth. And, it mirrors the unceasing and desperate measures I traversed – and the deals and vows I made, as I begged and pleaded with the universe to spare you.

We were robbed of so much time together, Paxton. You were robbed of far more. I was not ready to say good-bye. I am still not ready. I will never accept that this was your destiny and I will never stop asking, ‘Why?’.  Yet, if given the option to do it again – knowing it would end the same, I would choose you. If I were told that I would only be able to have you with me in this lifetime for 141 days, I would still chose you. If I knew the thousands of tears I would cry, and the thousands more I’ll yet shed – out of a sea of millions, I would search the world over until I found you. I’d wrap you in my arms and hold you close. With my lips against your forehead, I’d revel in the feeling of our hearts beating in tandem – if even for one more moment.

Paxton, I would choose you. Again. And again. And, yet again. You’re worth it all. You always were. You always will be.

Wherever you are, and wherever you roam – promise Momma that you’ll love until your heart bursts. That you’ll love until you run dry. And, that then you’ll love a little bit longer.

My life has been split into two – marked by an indelible ‘before and after’. But our love is not defined by a before and after. By a diagnosis. Or by death. Our love is far more powerful than all the forces in the universe. It transcends lifetimes, crosses worlds, and extends through time, space and distance.

My blue-eyed boy, you are mine. I am yours. For eternity.

I miss you. I love you.
xoox,
Momma
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i have a hang-over. please pass the kleenex.

Paxton,

This past weekend Momma went on one hell of a bender. And not the too much fun, due to too much wine type bender. It was an emotional bender – of epic proportions. One caused by mixing too many feelings, in too short of time…and not being capable of sleeping them off. My Lovelies arranged a gorgeous event fit for a queen, rather a princess, last Saturday. Marygrace lead the charge on pulling it offdespite my insistence that it was not necessary, and my pleas to not make me do it, she ultimately convinced me that it was exactly the exact thing I needed. I knew she was right. Grace is almost always right. (Almost.) I also went along with it because of my obsession of doing ‘everything different’ this time around. I’m playing a Jedi Mind trick that ‘doing everything different’ this time, will keep cancer (and frauds) at bay.

So even though my heart was saying ‘no’, my mouth agreed to let my Lovelies sprinkle me with good, pure love. But it took everything I had NOT to cancel on them. And they knew it; which is why Lala showed up at my house an hour prior to “start time” to be my chauffeur.  As we drove along, in order to not tell her to bust a U-turn and take me home, I preoccupied myself with a stern talking to. “You cannot cancel on your friends. Look at all they have done for you. As much as you want to hide, you just cannot. Not today, Danna. Make good on your word. Spend this day with your friends who love your spicy ass so much.”

I had to take a lot of mental time outs to get through the day. I’ve become so exquisitely versed in ‘blacking out’, while seemingly carrying on as normal, that I’m convinced even Lala & Grace don’t know when I’m doing it. The entire affair was as beautiful as it was difficult. I don’t ever experience a moment of pure bliss anymore. For even the purest of moments are tainted by the fact that you are dead. For obvious reasons, today’s near-bliss was particularly tainted. Throughout the event, I had many moments of happiness, but many more moments of complete and utter sadness, pain, shock, and just a feeling of being overwhelmed. The overwhelmed ‘panic-in-my-soul’ feeling never fully goes away. I suppose it makes sense that I am forever riding the cusp of a panic attack. I have suffered the greatest loss one can endure. Conversely, I now have the greatest gift growing inside of me – for which I am immeasureably grateful. Even as I oh-so-cautiously prepare for this precious life to enter the world, I feel death lurking all around me, because I am still so heavily grieving the loss of you.

Life. Death. Two dichotomous, yet equally powerful forces are literally at war inside of my heart. I want so desperately to experience true and unconditional love again, but am just as desperately afraid to allow myself such a luxury. Mostly, I am afraid because everything I have ever loved, I have lost.  But also because I fear that in loving a new life, I will somehow abandon a portion of the immense love I have for you. Even as I write this, the notion of anything or anyone being able to make me love you, even a fraction of an ounce, less sounds ludicrous. Yet, these are the thoughts which race through my mind on a steady loop.  

Not a day passes when I don’t take pause to realize how lucky I am to have these women in my life. The whole lot of them are one in a trillion. But I am also very aware of why they are here. They are here, in full-force, because you are gone. My Lovelies have always been integral forces in my life, yet the beautiful roles which they have stepped up and so seamlessly and selflessly assumed in your Momma’s shit-balls-crazy life is well beyond my capacity to understand. Suffice it to say, I am eternally indebted to each one of them for surrounding me, holding me up, and loving me … loving you, and loving your little sister too.

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I sure hope you don’t mind the explosion of pink that went off in your room today.

Stay with me, Sweet Boy.

xoox

Momma

hallow halloween. and the morning after.

Diddy,

Pictures, pictures, pictures.

Children. Smiling. Happy. Alive. Each wearing a costume somehow cuter than the next. I found myself pausing on some pictures a little, or a lot, longer than others.

The same ones always make my heart stop beating for a second too long. Those of the ‘Shadow Children’ – kids who are nearly the same age you would and should be, if asshole cancer didn’t murder you. There are five ‘Shadow Children’ who regularly appear on my Facebook feed. Once upon a time, I had to keep their parents ‘hidden’ from my feed. Seeing them, particularly because it was always in an unexpected fashion, was far too painful. One by one, I’ve somehow ‘unhidden’ their parents again…except for one. And that’s because, among other all-too-similar circumstances, she was born just three days before you. I purposely go to her Mommy’s page to look at her when I’m feeling really strong – but more often when I’m feeling really, really desperate to know what you’d be doing, how big you’d be, things you may like, etc.  Now a days I find myself staring longingly at the photos of your ‘Shadow Children’. My focus always lingers on their eyes. As I silently beg them to tell me if they see you anywhere. If they know where you went. If they can help me find you. Alas, they cannot.  However, I am relieved to report they are all healthy and happy. They appear especially happy this morning, because they participated in a time-honored Halloween tradition of Trick or Treat over the weekend. The lucky itty-bits are still high on sugar.

Speaking of Trick or Treat, I haven’t been brave enough to stand at our front door to hand out candy and wistfully watch child after child skip away, only to close the door and retreat into our home which sits unnaturally quiet and eerily empty. The last few years I’ve made sure to be out of the house when the mobs of adorable, innocent children come a knockin’. This afternoon, I made plans to have lunch and then head to the mall with Nana. When she pulled into our neighborhood to drop me off, a parade of kids in costumes passed in front of her car. I suddenly realized I had the Trick or Treat times wrong; I arrived home an hour too soon. In a panic, I told Nana there were a few things at Target I needed to get. So she whisked me off to Target, where I ambled up and down the aisles until the coast was clear.

I strongly feel like kid-centered holidays should come with a disclaimer, a reminder, a warning to the non-bereaved. For example, Halloween should be prefaced by any combination of creative PSAs which could air on the radio, tv commercials, shit…through ads on Facebook: “Parents, this Halloween take time to consider that some of those doors on which your adorable (blonde haired, blue-eyed, two and a half year old boy) will knock, house heart-broken people. People who desperately want to be parents, and have cried countless tears over their failed attempts to become someone’s mom or dad. People who are moms and dads, but their child cannot go trick-or-treating, or wear super-hero costumes while posing for super-cute pictures. Because their child is dead.”

Like mine.

The morning after a ‘holiday’, particularly the ones which are largely child-oriented, is almost harder than the actual day itself. Because our world is connected by social media. Social media – at which like a car wreck, I can’t help but looking. Post after post reminds me that I’ll never know what you would’ve wanted to dress up as this year. And I’ll forever wonder, at just two and a half, how many houses you’d have walked to, and how many you’d have opted for a ride in the wagon to make it a little further…before ultimately becoming too tuckered out to last any longer. I’ll never know if you would’ve proudly proclaimed some adorably mixed-up version of, “Trick or Treat!”, or if you’d have gotten an unexpected case of stage-freight, and froze – with your pumpkin clasped in your outstretched hand, hopeful to get a mini Snickers bar anyway.

I’m willing to bet I wasn’t the only Momma left wondering this morning. I know of far too many Moms who wonder what it would’ve been like to have had the privilege to walk their own little girl or boy through the neighborhood, and hear how cute they look in their costumes. I imagine they scrolled through their Facebook feeds today, and with tear-blurred vision stared into the eyes of the ‘Shadow Children’, as they mourned their child whose picture they should be uploading.

Parents who don’t belong to the worst-club-ever don’t know the thousands of tortures, just like this, which exist in our (new) worlds. Only a bereaved parent knows of the sucker punch which waits around every corner. No matter how cautiously you turn the bend, no matter how meticulously you scan the surroundings – there is no preparing for the blow. Although there isn’t a day that goes by that we need ‘reminding’ of what we’ve lost – some days all it takes to surmise the magnitude of what we’ve lost…is a picture.

Many people think that grief is some sort of “process”, which has an end. Trust me when I tell you, it doesn’t. Because every single day, for the rest of my life – there will be a morning after…filled only with shadows of you.

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Brush your teeth and hop into bed.

Stay with me Sweet Boy,

xoox,

Momma

P.S. You’ll always be my little Boo!  (Sorry. Momma couldn’t help herself. Look at that. Even when I’m sad, I’m still funny.)

41 birthday wishes. everyone of them is for you.

Paxton,

Yesterday was my birthday. Among the host of other holidays, my birthday lost its luster the moment you were robbed from ever having one. The fact that I’ve now had 41 birthdays strung together just doesn’t seem right. Probably because it’s not. Nothing about having your baby die in your arms and then be left to continue on in this world without him is right. No need for a “48 Hour Mystery” segment to solve the rub on this one, Diddy.

I spent my non-happy birthday at your favorite girl cousin’s birthday party. Alina will turn eight next week. I’m relieved she’ll have eight birthdays. She has always made my heart drum a little lighter. No matter how hard I try, I just can’t celebrate her turning eight without simultaneously feeling overwhelmingly sad that you will never have a birthday cake with eight candles to blow out. As always, not a day – particularly a ‘special’ day goes by where I’m not consumed with guilt over the many, many things you will never experience. Though most people are likely unaware – regardless of where I am, and what I am doing – I’m only partially ‘present’. I always have one foot in a parallel universe looking for you, reaching for you – always wondering how very different life would be if I could find you and bring you back to this world with me.

Alina may be your only girlie-girl cousin. However, she is anything but girlie. Oh, that spicy monkey. She truly is one of a kind. Alina ‘strongly dislikes’ anything pink, ruffley, or girlie in anyway. Dolls are not allowed in her room – which is donned in blue from top to bottom. When I say blue, think Cookie Monster, highway sign, Facebook blue. Literally: her walls, her bed-spread, her (self-made) decor…all blue. Your Lala says she always makes sure not to turn in a circle too fast in Alina’s room – for fear she’ll throw herself into a seizure. Before Alina went Back to School shopping this year, she announced that, “…she’s not wearing girl clothes anymore.” So, NIKE sweats and running shorts it’s been. Some of her favorite gifts included: a NERF bow and arrow, Legos, blue running shoes, camouflage leggings, and a skate board. A skate board for which she will build taller and steeper ramps; on which she bust higher and radder ollies. Alina the bold and beautiful. Have I mentioned she is one of a kind?

One of the most difficult parts about my birthday (and the impending holidays which always, cruelly, ensue) is when people ask what I want for my birthday/Christmas. I know these queries are coming from a place of graciousness. None the less, every.single.time. I want to reach out and slap the shit out of the person asking me such an insenstive question as I scream, “What do I want? What the fuck do you think I want? I want my son back in my arms: healthy, happy…and ALIVE. What’s that you say? You can’t find him at Mayfair, TJ Maxx, nor J. Crew? Hmmm. Well, then, it’s official. I don’t want anything…except to die before sunrise.” But even on my spiciest of days, I wouldn’t dare lash out on someone in such a brutally honest way.

Much like my life, my “Wish List” is vastly different than I ever saw it panning out in my head. Bottom line: given all the money in the world, not a single item can be bought.

I don’t want to hear overused cliches, or a string of empty words flung around my neck like a too-tight, itchy turtleneck. No. “…everything doesn’t happen for a reason”, because there is no reason good enough in this twisted-world to justify the pain you endured, nor the ever-present pain in my soul from losing you.

I certainly don’t want the coldness and emptiness that accompanies the abandonment of a cast of characters who I was naive enough to believe when they promised again and again they’d never leave my side.

I want strong, sacred, loving arms to hold onto me while I sob uncontrollably in the middle of the night…soaked to the bone with sweat, due to another gruesome flashback.

I want eyes that see this pain is not the kind of pain from which I will ever recover. Even if given a year. A decade. Or a lifetime. I will never, ever be whole again.

I want hands that remember to trace the letters of your name on my back, and a voice that speaks your name, loudly, boldly, proudly, and often – without needing to be reminded.

I want feet to walk with me – slowly, gently, without pushing or rushing, graciously following my pace – until I can see color, if even in muted shades – once again.

I want ears that can listen to the sound of my heart breaking – over and over again.

There you have it: your Momma’s list of ever-elusive wishes.  For today, I’ll settle for the sound of AC’s giggle as she excitedly opens her not-so-girlie-girl gifts; the sight of sunlight reflecting off the boys’ heads: as they run wild and free through their back yard, and the steady strumming of ‘hope’ innocently moving about inside me.

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I will look for you in my dreams.

Stay with me, Sweet Boy.

xoox,

Momma

gold is the new pink.

Diddy,

September is nearly over. You know what that means, “Childhood Cancer Awareness” month is drawing to a close. I had big hopes for September this year. My ultimate goal remains that Gold:September will soon be as wide-spread as, and synonymous with Pink:October. For weeks, I have been in the middle of writing a post about all which has been unraveling surrounding my plight, and the plight of some of your favorite PaxLovers (LaLa, Erin, Dan, Meg, Allison, and Matt). Everytime I turn around, it seemed as though a new development has unfolded. In the end, I decided my energy would be better spent trying to make a real difference in this fight than to stop, even for a minute, to document my thoughts about how it shouldn’t be this hard to get people to pay attention to childhood cancer.

There are some special people, in high places,  who are paying attention…and joining our fight. One of the accomplishments I’m most proud of are the many different Proclamations that officially declared September Childhood Cancer Awareness month. Mayor Tom Barrett, City of Milwaukee, lead the way. Without pause – he declared September Childhood Cancer Awareness month in Milwaukee – in your honor. Following Mayor Barrett was Steve Ponto, Mayor of the City of Brookfield and David Ament; Mayor of the City of New Berlin; as well as a personal favorite of mine – Dan Vrakas, County Executive of Waukesha County.  

In less officious forms, several communities actively generated awareness as well. On September 20th, PAX Luminary bags lined the streets of neighborhoods all around the Milwaukee area. There were also several individuals who put a twist on the now infamous ALS Ice Bucket Challenge and chose PAX as their foundation of choice. In fact, close to $1,500 was donated to your foundation throughout the month. The timing couldn’t have been more appropriate. 

Unfortunately, there are some seriously disappointing events which have resulted from my efforts to keep Childhood Cancer Awareness on the forefront of peoples’ minds. These unfortunate occurrences have sent Momma into a tailspin. After much consideration, I refuse – simply refuse to give them any god damn air time – for now. For now, Sweet Boy. But as I always tell you, in time, “…shit always floats to the top”.

One thing I must give air time to is the refusal of the Empire State Building to light up Gold for one night during the month of September. The thousands of requests which have been made by desperate, yet hopeful, parents have been denied for some seriously lame ass reasons. The ESB lights up for pretty much every cause out there, but apparently childhood cancer is not worthy enough to be one of them. One night last week, it was lit green to promote the premiere of the  Teenage Mutant Ninja Turtles movie. Promise.

During your treatment, and nearly every.single.day.since, I felt overcome by the overwhelming notion that you were being experimented on like a lab rat. I don’t understand how you had the biggest team in the history of Oncology at CHW, composed of the smartest people across the land, and no one could come up with an answer….not a single fucking answer. It still burns my soul that your death certificate, which I will never open, but inherently know lists your official cause of death as, ‘undifferentiated sarcoma’.  To those who are lucky enough to remain blissfully unaware of the world of childhood cancer, “undifferentiated” loosely translates to: “We don’t really know what kind of cancer your baby has…and without knowing what we’re treating, we couldn’t identify a protocol to treat him. So he died.”

I refuse to turn the other cheek and accept that more strides haven’t been made in the world of childhood cancer. It didn’t take long to learn that childhood cancer seems to be a dirty little secret that nobody wants to talk about. But, if nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and kids will continue have the same grim outcomes. Until things change, I plan on fighting the only way I know how. The way that you  taught me – by being as spicy as possible.

Through my new network of parents, who belong to the “club” no one wants to be a member of, I started to hear the soft roars of brave parents who are trying to accomplish some of the same things I am – only to be met by one brick wall after another. As the month moved on, these soft roars became louder and louder. Eventually it seemed as if the entire world (at least in my corner of the universe) was entranced by this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all Empire State social media pages. The outrage intensified when they noticed their posts about anything childhood cancer related, started to disappear as well as pictures of their children. It was as if, much like our beloved babies, this “dirty little secret” was expected to die and be buried.

The Empire State Building grossly underestimated the advocates of childhood cancer community. We are not merely promoting a Hollywood film, or a front-runner for a Democratic Convention, and we could give a shit about the release of Mariah Carey’s new CD. We aren’t merely advocates – we are parents. Parents who were forced to watch our child fight for his/her life…while we helplessly stood by and watched them slowly die.  We are parents trying to change a very dark world by giving it a beam of golden light to help ignite this change. We are simply trying to give other kids a chance so they can grow up to do the amazing things that I know you would have done.

I want a face-to-face with the heartless bastard who operates the ESB. I wouldn’t need, nor want much of his time. In fact, I’d simply ask him one question, just one:

“What if it were your child?”

Huh?

What’s that you say?

If it were your child, you would want the best awareness, funding, and treatments possible so you wouldn’t have to kiss your baby’s urn every night instead of tucking him into bed?

That’s what I thought you said.

Jackass.

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Close those baby blues and sleep tight lil’ one. If you need me, just call my name.

Stay with me, Sweet Boy.

xoox,

Momma

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

courage. i find it in you. only in you.

Paxton,

Every day, someone asks me, “How are you?” It’s a weird way people in our culture say, “Hi”. Because they don’t REALLY want to know how the person they ask, in passing, is doing. We are Americans. We are far too self-absorbed with our own problems, own achievements, own goals, and our never-ending “To Do” lists, to give a real shit about someone else’s world. Every so often, someone asks me, with sincerity in their voice and a pause in their gaze, “How are you doing?” They actually want an answer. Or, at least they think they want an answer. I love those kind people for remembering, recognizing, knowing, I am still not ‘okay’. Nonetheless, I always provide the only answer that efficiently stops them from prodding further into my sacred space. “I’m fine.” Given the strength, my authentic reply would be far, far different. Yet, as it turns out, the truth makes people uncomfortable anyway. Because people don’t like when I say, “Well, I have to make a conscious choice to continue to fight this fight every single day. No matter what. Every.day.is.a.fight.” If I spent the rest of my life trying to explain how many break-my-already-broken-heart-scenarios I encounter every day, I wouldn’t be able to convey the depths or breadth of the grief which consumes me.

I continue to fight this fight despite my fear, despite my second guessing, despite my broken heart. I carry on despite the fact that my heart will never be unbroken. I venture into the world despite the flashbacks and panic attacks-drenched-in-sweat that still wake me up in the middle of the night. I execute daily functions, sometimes mimicking those of a normal person with a normal life, despite the ache of my empty arms – – still searching, pleading, begging to be filled with the only child who can gild the cracks of my broken heart.  I attempt to nurture friendships and relationships, despite the fact that I’m not sure I can ever trust anyone or anything ever, ever again. I get out of bed each morning, despite the fact that I will never be able to change the outcome. I do this all despite the reality that all I can really do – is hope…hope that somehow, someway, we will be back together again.

I make the choice to carry on in this fight, because I am the Momma of the bravest boy in all the land. And, what kind of Momma would I be, if not merely a sorry excuse of one, if I cut and ran in the other direction? Told myself the death of my only child, at the age of 20 weeks old, was “…meant to be”? Took the easy way out? Laid down and threw up a white flag? You, Paxton Bowe, are exquistely brave. You are the reason, the only reason, I fight this fight for another day.

It is often said, “…in broken places is where true strength lies”. In other words, where one is cracked wide open is where she is strongest. After all, the cracks are where the light shines through. That being said, it is within my torn, tattered and broken heart that my Momma Courage roars loudest – even when it’s only whispering, or barely breathing in between choking sobs. The courage that resides in the cracks does so, because you make it possible.

Even in the whispers of the night, from the trenches of my tear-soaked pillow, I feel your courage channeling through my veins. Even when I feel like I’ll never make it another step forward, your courage gently pushes me onwards. When sheer fear is overtaking my entire body, your courage calms my soul. And when I can barely speak because terror has suffocated the words and clamped my vocal cords – your courage settles my heart. I am able to roar with the fierce tender love that is quintessentially ‘mother’ – because you. are. my. son.

Despite the odds – I choose to fight. Despite the risks, I choose to let my heart beat to the drum of hope and love; even though the clanging of fear and despair oft rings louder and truer.

Diddy, I wish I could guarantee you that someday I am going to stop having to the urge to give up the fight. But you and I both know there are no guarantees in life. There is only now.

And, for today, I’ve got this. Because you are mine. And, that is all I will ever really need in this world. 

Thank you for choosing me. Thank you for not giving up on me. Thank you for showing me the epitome of true courage and teaching me the meaning of unconditional love.

Take Courage

Stay with me, Sweet Boy.

xoox

Momma

go get my girl.

Paxton,

No. No. No. Not again. I simply cannot do ‘this’ again.

Our beloved Ms. Nicole is so very, very sick. She is so sick that no one is saying what everyone is thinking; Nicole.may.not.make.it. Which is precisely what has been running through my mind on a constant loop: “Nicole cannot die.” “Nicole cannot die.” Diddy, Nicole cannot die – because she has so many reasons to live. This is all so entirely fucked up and beyond unfair I could light the world on fire with my rage.

At this point, no one knows quite what went wrong, all we know is that Nicole, a 26-year-old picture of health, grace, strength and beauty, went into acute liver failure and desperately needs a new liver – and she needs it now. On July 8th, we thought our pleas were answered, as a match had been secured, and a liver was on the way to save my super-hero sidekick. After 14 long, torturous hours of waiting, the Transplant Team ultimately determined the liver was not going to work. How is that possible? How is any of this possible?

Only a few days ago, Ms. Nicole was on top of the world. She started out her summer with two a-days workouts, sunbathing and wedding planning. She is punch-drunk in love with her hunk of a fiancée, who she is marrying next June. In fact, just last Saturday she bought her wedding dress. It was the very first one she tried on. Overcome with excitement, she sent me a photo of her in her perfectly-perfect dress. Her smile was so bright and bold it nearly overshadowed the beauty of the vision of her in that perfectly-perfect dress. Almost. Now she’s in a coma, lying in ICU, and has been moved to the #1 spot on the National Liver Transplant waiting list.

Nicole has a Caring Bridge page, she has a Go Fund Me site. She is being sustained by a feeding tube and a PICC line.  Her insides are being infiltrated with an onslaught of steroids, chemotherapy, methadone, and dopamine. While her body is frail, it is swollen nearly beyond recognition. Nicole is fighting for her beautiful, bountiful life – and NO ONE knows how any of this happened. You already know that all the horrifying parallels of your fights have set a million and twelve triggers into motion for Momma.

I received a text from hunky Tyler today that said, “Nicole is in ICU…but, she is in Room #12. It is the best sign we’ve received so far.”

Nicole Grace. I am certain she and I are long-lost soul sisters. One of the many reasons I love her so much is because she has helped sustain my life during the darkest, loneliest parts of this walk – when the twists and turns took me lower, and the darkness got even darker, Nicole held my hand a little tighter. Further, Nicole possesses uncanny strength. She is strong-willed, strong-minded, and strong-bodied. In fact, the very definition of her name, Nicole, means: “victorious people”. That simply is no coincidence. She has lived up to her namesake in a hundred different ways. This simply must prove to be her greatest victory yet.

Please keep doing everything Momma has asked you to do. Now is not the time to rebel, my spicy little  monkey. Ms. Nicole needs you. Take good care of her. I will do my best to help her family and Tyler in any way I can. But I feel helpless. There is nothing I can do or say that is going to make this easier. All I have to offer is that I know what it feels like to watch the love of your life fight for his/her life. And I am not dead from the pain. Most of the time I wish I was. Nonetheless, I am still here. That’s all I’ve got. That and I am just so sorry.

I love you more than all the stars in the sky.

Go get my girl, Sweet Boy.

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xoox,

Momma

 

 

two years. too long. to the moon and back.

Diddy,

July 2nd. The date I last held you in my arms, as our hearts drummed in tandem. The date I last kissed your beautiful, perfect head and soaked in your sweet baby smell. The date of the worst day of my life…times two. This day will never get easier. I will never stop recounting every hour, every minute, every last moment that lead up to the last one we shared together. I will never forgive myself for not taking you to the doctor sooner. I will never stop wishing that I could rewind time and find a way to save you. I will never stop fighting your fight. Most of all I will never stop loving and missing you madly. Never. Ever.

Things have been unfolding like rapid fire on this side of the universe. With each new development, your existence is reinforced beyond one single, solitary, sliver of a doubt. July 2nd, began with a much-anticipated phone call. Given the date, I vacillated on whether or not it was right to take the call on the worst day in history. But, something in the deepest part of my soul told me a you had a message you wanted to deliver…and the timing of your message was no coincidence. I braced myself against the wall in the furthest corner of your bedroom, with Giraffey and Little Tiny Bear clutched in my sweaty, clenched palms as I did my best to process the information being relayed to me. As the words rolled off of the caller’s voice, tears of relief, joy and guilt burned down my face. Her words slowly turned into background noise, as I said over and over again, “…my Sweet Boy is pure, pure perfection.” Not only was the news perfect in every last way – the timing of it, naturally, couldn’t have been sweeter. I don’t know what I ever did to deserve you, Paxton Bowe; but, I will spend the rest of this life trying to make you proud.

My heart has never known such a juxtaposition of joy and sorrow…elation and guilt…relief and dread. Nonetheless, I wanted to throw you up in the air and tell you all about the wonderment and miracles which are coming our way. My mind in knots, my stomach reeling – and you nowhere to be found, I ran straight to the bathroom and threw up my breakfast instead. Twice. I guess once for each year we’ve been apart.

Your Uncle Stephen & Lala had a small gathering at their house in your honor. I will hate that those types of gatherings exist as much as I’d hate if they didn’t for the rest of eternity. Almost all of my lovelies were present; although the mood was light, everyone’s hearts were heavy. We did our best to wear fake smiles, complimented with faux-laughter and make-shift contentment. But, each of our souls was silently crying, while simultaneously wishing there were never a need for such a shitty reason for a shitty gathering. Shit-o-versary cards don’t exist…nor do shit-o-versary cakes or gifts. Because everyone knows there isn’t anything in the entire world that could minimize the shittiness of such a date: not cake, not cards, not packages in shiny bows. Not even all the people you love the most in the entire world contained in one room, holding you up, and telling you that you are not in this shit storm alone.

At nightfall, adults and children alike launched wish lanterns into the damp and dreary sky for you. Mine was so chocked full of kisses, I didn’t think it would lift from the ground. But it did. And, I followed its glow until it was swallowed by the moon’s clouds. Then I watched a little longer. I hope you saw this corner of the sky light up for you. I hope you felt the waves of love we sent to you. I hope you know how deeply and desperately you are missed. I hope you understand I would give anything in this mixed up world to trade places with you.

Thank you for the phone call. Thank you for my lovelies who surround me with their love, even though I don’t deserve it, nor have the strength to reciprocate it. Thank you for the greatest gift of all – being my son.

tyler knott empty

Stay with me, Sweet Boy.

xoox

Momma

a fragmented sea of love. because you’re missing from everything.

Hi Diddy,

I did my best to keep myself as busy as possible today. With no responsibility, no schedule, nowhere to be, and no one to be any where in particular with – this proves more challenging than I can sometimes manage.  After running all of the errands I could possibly think of, I starting heading towards home. As I approached my house, which loosely resembles a place I once knew as home, I kept driving. I drove, and drove nowhere in particular. Somehow I reached the lakefront and instinctually pulled over.

I looked out into Lake Michigan as far as I could see. My eyes took in the sights of the water meeting the horizon and everything in between: a flock of birds flying in v-shaped pattern, sail boats gliding atop the crystal blue waters, a man walking his dog, an old couple walking hand in hand, and a woman pushing a toddler in a stroller. Yet all I really saw was a world continuing to turn on its axis and creatures, big and small, continuing to live. The audacity of it all – despite the fact that my baby got cancer and died – caused me to scream at the top of my lungs. The echoes of my primal scream will always leave me more scared of myself than a normal person could ever understand. It is a sound that remains foreign even to the very body which produces it. I haven’t screamed like that in awhile now. I guess I needed to release some of the pain which was compiling inside of me before I burst into a million pieces. I may not scream as often as I should, but I still cry everyday. Sometimes in the shower when I have to face another day without you, sometimes when I’m trying to fall asleep and can’t kiss you good night – and don’t even know where you are, sometimes in my car when I am suffocated by the booming silence of your absence. Other times, in the middle of doing absolutely nothing, the tears start pushing on the back of my eyes – forcing me to cut and run somewhere that I can let them fall without having to answer anyone when they inquire, “What is wrong?” Everything is wrong.

After my ‘primal shit show’ for one, I did what I usually do when I don’t know what else to do. I go find your cousins.  One of them always finds a way to mute my sadness for at least a little while. When I walked in their house, the three little people who have saved my life a million times over greeted me with overwhelming excitement and gestures of love I know will only last a few more precious years. The time will come (far before I’m okay with it) when their crazy aunt who comes and steals kisses from them in exchange for candy and gum will be replaced by best friends, girlfriends/boyfriends, teenage priorities – and I’ll have to suffice with a mere glance in my direction, and a barely audible, “Hey DD.” For now, I will suck up their good lovin’ with every cell in my tired body.  

As if it were a perfectly normal query, Sennet said, “DD what’s your favorite song in the whole world?”  Taken off guard by his question, and enamored by the fleeing innocence he intermittently projects, I stammered, “Uhhh. Geez. I’d have to think about it, Sennet.” Alina chimed in, “Try?…just because it burns doesn’t mean you’re gonna die…you gotta get up and try, try try.” Just like that a lump started to rise in my throat. I constantly worry about the emotional trauma these little people have endured because of cancer, because of me, because of the people I let them fall in love with only to have them be ripped from their lives.  They should not know about the pain that has become commonplace in their once care-free hearts. No child should. Most certainly not these babes.  My 7 year-old niece shouldn’t know that Try could very well be her aunt’s life theme song.  Before I could compose a response, Sennet countered, “No. Yellow.”  And the three of them began to sing, “…look at the stars, look how they shine for you…and it was all yellow too.” It was the most heartbreakingly beautiful sound I have heard in a very long time. Luckily, I was safely tucked away in the bathroom – where my tears fell silently into the sink. As their serenade faded your best buddy, Finn, confidently proclaimed, “Well yeah, Yellow is DD’s favorite song. It’s about Paxton. And Paxton is her favorite per-shun.”  The three of them quickly concurred. And so it was settled.

It took all my strength to push the tears and the vomit back down into their hiding places, and come out of the bathroom before it was ‘too long to be there’. I wanted to collapse on the ground in between the sea of love created by these three little humans and tell them to fall asleep with me until we woke up in a different lifetime. A lifetime where you are among us, and there are four little humans laying among me. But, I knew I couldn’t do that.  It would break your cousins already vulnerable hearts. So I put on my fake smile and crouched down to be eye level with them and asked about Mindcraft and Plants and Zombies, sleepovers and Safety Town. All the while, I sustained a parallel conversation in my mind with you. The one where I apologize that you are not here too, that I carry the guilt with me every day for not protecting you, that I worry every second of the day if you are happy, safe, and warm enough, and that I hope against all hope that someday, we will be together again.  Meanwhile, I held the smile on my face for the picture I know will be taken by those three little minds. I will forever wonder how in the world I can look happy, if only in a picture inside the mind of a child, when I am still so broken, sad, and shattered.  

It truly is amazing…the indomitable nature of a human soul.

I miss you. I love you. I hope you are running wild and free.

 

Stay with me, Sweet Boy.

xoox

Momma