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

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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

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

 

 

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

Before. After. There is no in between.

Paxton,

May is officially here and I’m trying my best not to go into freak out mode.  You know what May means; and no matter how many Jedi mind tricks I attempt to sell myself – one’s subconsciousness always knows the truth: May will never get easier. May 8th: diagnosis day. Mother’s Day: the day you started chemotherapy. (i.e. The day I allowed poisonous venom to be pumped throughout your teeny, tiny body. One of a thousand ways in which I failed to protect you.) May: the beginning of the end. May: there is no escape.

I will come up with some sort of plan to get through the shitty days of May.  I realize how very lucky I am to know that I will do so surrounded by some of my most favorite people.  Having my lovelies by my side will help ease the pain a bit. But the body never forgets. No matter where I am, who I am with, what I am doing – every cell within me remembers the pain of these dates.

I don’t live in a normal world anymore. I live in a world that I often feel very alone.  I tend to do alright in this world. This world without you is so hard for me to live in, but I have done my best to make it bearable by living each day the best way I’m capable because I hope against all hope that you are watching me, and that you are with me. I refuse to disappoint you by being a loser Momma. You may say this new perspective has given me a clarity I never had before. I guess that all comes with the territory of living a life that includes a line of demarkation: a ‘before and after’.  My before cancer life, and after cancer life are unequivocally two completely, wholly, vastly different lives.

The always absence of you is more ever-present during certain times and certain days; May being one of those times. As always, I will keep you tucked as close to me as possible, and carry you with me in everything I do and everywhere I roam.  Thank you for not giving up on me.

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

Stay with me, Sweet Boy.

xoox

Momma

 

 

i’ll up the ante again. and again.

Paxton,

A memory of you popped into my mind’s eye this morning. You were happily bouncing and cooing away in your bunny seat, while smiling at your (adorable) reflection in Mr. Cow. As always, I recalled every last detail with acute precision: from the the tiny crook in the lobe of your left ear, to your almost-but-not-quite-off-centered smile, down to the way your arm involuntarily pumped into the air. Your half-excited, half-serious voice echoed in my ears and straight through my bones.

It didn’t take long before I began negotiating, with no one in particular, for a deal they couldn’t refuse. Bring you back to me. I pledged anything – everything, in exchange for you in my arms. My desperate negotiation ended the same way it always does; with the harsh realization that no matter how grandiose or lavish my ante: it will never be enough. You aren’t ever coming back.

Should anyone still find validity in the age-old, psychological Stages of Grief, your Momma must be stuck smack dab in the middle of the ‘Barging’ stage. If you ask me, there is simply nothing universal about the time or way in which a person grieves. Suggesting that a prescribed way to mourn the death of your only child exists, is as insulting as it is ridiculous. In fact, I am quite certain it makes perfectly good sense that I find myself attempting to strike a deal with the universe to let me have the love of my life back in my arms.

Without a doubt, and without pause, I swear on all things good and pure, I would give anything…everything, to have you back again.

I believe it’s just about time for your afternoon nap. Allow the rain falling from the sky wash away any tears you’ve cried today. Let the lyrics of your afternoon lullaby line your soul; I mean every last word. Fade into a peaceful slumber. I will be right here when you awake. I will be here forever thereafter, too.

I miss you. I love you. I hope you catch the kisses I throw into the sky for you.

xoox,

Momma

P.S. Today is April 26th. You’d be 26 months old today. I am so sorry.