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

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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

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

 

 

wrestling…and my entire life is summarized in one word.

Paxton Bowe,

I’ve spent a good deal of time throughout the past several months watching your warrior brothers wrestle their way to the top of the GMC conference, and through the WIAA Regional and Sectional tournament. Momma sat in those bleachers – a complete nerve ending: picking her eyebrows, biting the inside of her cheek; all the while holding back my visceral urge to run onto the mat and stomp each competitor brazen enough to try to bend or maneuver one of those boys in the way they shouldn’t bend.

Today, Joshie and Juju left for the WIAA State Wrestling Meet. I sent them on their way, with bags and bags full of ‘all the right food’, ‘good luck blankets’, ‘motivational notes only-to-be-opened-at-specific-times’, and ‘pinkie promises’ to keep me updated with every last detail. After hugging them for the fourth time, I released them for their chariot; god love them for putting up with my neuroses. I did my best to burn the image of them running towards the gym doors, filled with fleeing innocence, into the permanent parts of my brain. As they rounded the corner, Juju poked his head back in my direction – one more time…and waved good-bye. I almost collapsed right onto the floor.

I shoved the sob rising in my throat firmly against the back of my chest. As I held it in place, tears began to beat against the backs of my eyes.  True to Wrestling Momma form, I pinned the pressure and the tears in place…right up until 3:09. As I attempted to flee for the Exit door – my ever-insightful, keenly astute friend stopped me in my tracks. She said, “This all has to be equal parts heart-warming and heart-breaking for you.”  And just like that, I came undone…but good.

Yes. It is equal parts heart-warming and heart-breaking. Every last part about my AC life  is neither one, or the other anymore.

I wish there was a way I could adequately or accurately explain my AC life, without having to ever become who I am now. I  am still the person I’ve always been; yet I am not the same at all. I am still a mom, yet I am not able to mother…all at the same time.

The a pain I carry is unlike any pain I can describe.  This pain is always there.  It doesn’t nap during the day, or get safely tucked into bed at night.  It follows me everywhere, it never leaves my side – like you should be doing. Only this grief-induced pain is not cuddly, nor sweet and it certainly does not make me smile, squeeze my face, or give me good-night kisses.

My grief is almost always coupled with guilt. It is relentless in nature. I am consumed with guilt when I devote hours on end attending your warrior brothers’ wrestling matches. I never got to watch you learn to walk, see you run – and I certainly will never be able to attend one of your sporting events, or participate in a parents’ night….as I proudly meet you at half-court, while donning an oversized button displaying your handsome face. On the other hand, I am equally consumed with guilt when I don’t attend their matches – as I feel like I am letting both them and you down. After all, you have made it abundantly clear that you’re hopelessly in love with them.

I still catch myself bargaining to have both worlds. The “inside-my-head” voice plays on loop, “If I can go pick Paxton up from daycare, and bring him to the meet – I won’t beg for the boys to win again tonight. Instead, I’ll just take them all for ice cream. (Or celery sticks if they’re cutting weight.) One minute, I’ll wipe the dried blood off Joshie & Juju’s faces; the next, the dried ice cream off of Paxton’s chin. Each of them will remain blissfully unfazed by my OCD; as they’ll be lost in a world only traversed by the spiciest of monkeys. Before the evening closes, I will thank my older boys a hundred times over for the myriad of ways in which they so effortlessly love my son. We will all head to our respective homes, and sleep soundly while when dream of of all things happy.”

Paxton, I plea for a different ending, over and over again; one where no one dies.  Most especially not you. Then, the panic of it happening again, anytime, anywhere…sets in – followed quickly by the spiraling of obsessive thoughts, (What if…If only?). 

Ahh, those boys: they will never understand how they have saved my life over and over again. Alas, they’ve set out to participate in another long-awaited, well-deserved, exciting experience. Please give them extra special doses of bravery throughout the weekend. As always, watch over their vulnerable hearts…which this mixed-up, fucking world has already shattered into a million little pieces. When you find me in those bleachers, biting the insides of my cheek, and picking my eyebrows – climb into my lap. Momma’s arms will always hold you safely … right where you belong.

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

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Stay with me, Sweet Boy.

xoox,

Momma

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

Sweet Diddy,

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

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

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

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

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

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

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

Stay with me, Sweet Boy.

xoox,

Momma