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.

IMG_2831

I will look for you in my dreams.

Stay with me, Sweet Boy.

xoox,

Momma

Advertisements

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.

This slideshow requires JavaScript.

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

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

hiraeth. you are my forever home.

Diddy,

I spent the afternoon doing one of my favorite things, with one of my favorite people. I had a “special day” (aka “Day of All Yes-es!”) with your super hero side-kick cousin, Finn Foo. Whenever Finn and I set into the world together, I feel as though I could conquer the universe. I also feel more vulnerable than when I am in the presence of any other person; as million an one vibrations of how life should’ve been echo through my bones. I remain convinced he carries pieces of your heart within his soul, and pieces of your soul inside his heart.

After an action packed day, Finny climbed into “his side” of bed and began fade into a slumber. Moments before his almond colored eyes closed for the night he said, “D.D., When can I meet your other kids?” Equal parts confused and rattled by his query, I quickly assured him I didn’t have any other children. Sleepily, he persisted, “…yes you do; you tell stories about them all the time. I want your other kids to be my cousins just like Paxton.”  Oh sweet, innocent, adorable Finn.

Silenced by the need to stifle my sobs, I was unable to explain that when I refer to, “…one of my kids” – I actually mean, “…one of my students”. For once, my lack of composure likely worked in my favor.  A conversation of that nature would’ve only further confused the little guy. My arm was the only part of my body that wasn’t paralyzed by the reminder of Finny’s ever-complex existence of trying to navigate life without you – his wing-man. So I used it to stroke his hair across the top of his furrowed brow. I managed to eek out the only words which needed be said: “Paxton is my only child.”

As always, the voice inside my head ensued on one of its familiar rants. I’ve resigned myself to the fact that it’s talking to the ‘other people’ inside my head. So it’s fine. “Paxton is my only child. He is my only, miracle child. He is my only, miracle child who I waited for my entire life. He is my only, miracle child, who I waited for my entire life – and he is dead.”

My only child died. He was diagnosed with cancer when he was just 12 weeks and three days old. In 146 days, he raised an entire village. In less than one second, he stole my heart. Without uttering a single word, he rewrote the definitions of bravery, courage, grace and peace. My son took his last breath while safely tucked in his Daddy’s arms…with his cheek pressed against my own. I felt the warmth of his last breath brush across my lips. It is the only good-bye kiss I will ever get. And, it will suffocate me for as long as I am breathing. My only child is dead. 

No matter how many times I say it, even if it’s not out loud and only to the ‘other people’ in my mixed up head, I cannot wrap my mind around the incomprehensible truth. You are dead. I am not dead; yet I am not alive. I am fighting to live; yet begging to die; breathing yet suffocating; attempting to exhale, yet holding my breath; smiling on the outside, yet crying on the inside. My existence is every parents’ worst nightmare; only it is not a dream-state nightmare. It is a real fucking nightmare. It is my life.

Other parents complain about their kids spilling kool-aide on their carpet, their homes being a mess, their laundry piling out of control. Whenever I hear such banter, I swallow my grief whole while I silently beg to choke to death on my wishes to have problems just.like.theirs. Mud-stained, sticky-carpets; spilled milk, smashed peas and crushed gold fish crackers randomly strewn across my kitchen floor. I ache for the signs of the living, breathing, playing, alive in my home version of you. I long for the iterations of all that could have and should have been.

Instead, I have an empty chair at every meal, ‘loads’ of laundry that make me twinge with guilt and shutter with rage that it’s all I have, again this week, to wash. The contents which encompass your entire life sit neatly stacked in plastic bins – which have been organized with acute precision, in my attic. I can’t bring myself to verify as much – but, I know in my soul they now smell more of ‘stillness’ than of you.

It is true, I refer to my students as my ‘kids’. It is also true that I love some of them in ways the majority of the planet could never understand. In many aspects, I consider parts of them to be mine. I also love your crazy daisy, adorably unique, and perfect in every way cousins well beyond my own comprehension. I know for a fact parts of them are mine.  From the outside looking in, my life appears to be chocked full of love, from a vast continuum of children young and old. Rest assured, it is always empty. I’m left with an equation that never equates.  No matter how many times I recompute, the only one that matters – the only one who is really mine, is missing. A million more children, and a trillion more blonde haired, blue eyed boys, could never replace or erase the pain of missing you.

There is an eternal hole in my heart and in my life. It is the precise size and shape of you and only you.  No one and nothing will ever be able to fill this hole. Despite the incomprehensible complexity of being a bereaved mother, all that truly matters is quite simple. You are my son. You are my heart. You are my soul. You are my dream come true. You are my home. 

Diddy, you are as real to me now as you were when you were here in my arms.

Stay with me, Sweet Boy.

1453271_625359260838757_329810949_n

xoox,

Momma

BC. AC. FuC. And Uncle Dave sings Baby Blue for you. (Don’t tell Auntie Kupa.)

Paxton,

When I lost you, I lost so very many things: my only child, my chance to mother you; all the things you were and would have been; our little family; my future; my place and identity; my confidence; my naïveté; my view of the world as a safe and just place.

I can easily say my life is now divided into two distinct parts: Before Cancer (BC) and After Cancer (AC). In addition to mourning the loss of you: my dream come true – I’ve also mourned over the version of me I lost when you died. Some days, I long to have her back. Not as often, or remotely as desperately, as I long to have you back. Yet she is gone. You are gone. I am here: living in my AC world. Without you. And without the Danna I knew for 38 years.

Most days, however, I would not trade in the new version of me. (Other than if to have our entire BC world back…the one where you never got sick, you never suffered, and we never kissed good-bye one.last.time.) Given no choice in the matter, I have morphed into a different woman. Naturally, there are parts of me which are still broken and empty. Some are broken beyond repair. How couldn’t they be? When a parent loses a child, they lose a part of themselves. Beyond that, they are permanently rocked to the very core of their soul. The only way around this truth – is if they simply do not have a soul. However, there are also pieces of me which are far wiser, stronger, and more refined than that of my former self. All of which can be attributed to the fact that particles of you flow throughout my body and are contained within my soul.

Perhaps my former self needed to lose her naiveté, her blind trust, and her belief that those she loved would never betray her. She needed to become strong – in a entirely different capacity: one which allowed her the strength to see the world as it is, not how she willed it to be. She needed to acknowledge that the most difficult times do, in fact, reveal people’s true character – and she had to accept all which was unveiled. She needed to learn, the really hard fucking way, to always trust her god damn instincts.

Though few and far between, there are times where if I quiet my mind long enough, I vividly see the gifts you’ve left for me. Despite the depth and breath of the pain I experience from having lost you, I see reminders all around that I, too, have gained. Not enough. Not nearly enough gain for the hefty, immeasurable price of losing you. Still, you must always know that you alone are a far, far more profound gift than the torture and the despair of living in my new world without you.

My AC world is mournful and tenuous at times. Yet it is also beautiful, meaningful and sublime in a way I never imagined. Gibran describes it best when he prophesied that only after having really “…looked into the eyes of such sorrow” can one find their way to pure joy. For the infinite joy you have brought into my life, and the promise you continue to bring…I remain humbly and infinitely indebted.

It should come as no surprise, Dave has a little diddy for you, Diddy. Allow him to serenade you into a peaceful slumber tonight. Rest your head against my chest. Close those baby blues…Momma is right here.

Thank you for helping your Momma become a better, stronger, wiser woman. 

Stay with me, Sweet Boy.

xoox,

Momma

20 months. 40 years. even mother nature knows we belong together.

Diddy,

Yesterday you would have been 20 months old. I am getting better and better at knowing what you’d be doing as each month marker comes along. I never wished to be more blissfully ignorant about anything than I do about all things babies and toddlers. There isn’t a day that goes by that I don’t get lost in thought imagining all that you would now be able to do. For starters, I hear you talking in two or three word sentences. “Diddy is fly.” “Momma is sleepy.” (But also fly.) I see you completing block puzzles, or pointing to your favorite things when we read: like Lowly the Worm in your Busytown books, or to the moon on each page of “Goodnight Moon”. I picture you proudly helping Momma with little tasks like, “Go get your jammies.” “Put your trucks away.” In addition to all the innocence and wonder you were robbed of, I am also tortured by the things I can’t envision. Mostly by the fact that I can’t picture what you look like anymore. Every so often when I’m somewhere in between asleep and awake, I see you. Only for a flash…before you turn into the baby I last kissed at 20 weeks and 1 day old. I have every inch of you at that age memorized: from the top of your soft head, to the tips of your teeny toes. But I want to see you now, at 20 months old. I want to see you without trying. I want to hear you without straining. I want to hold you without imagining. I want to kiss my 20 month old son and have you kiss me back – with as much teething-induced drool as possible. Instead, I can’t even say for sure what you look like. Because you died when you were just 20 weeks old.

On top of your ‘should have been’ 20 months old day, I turned 40 years old. How it’s remotely right that I have already lived for 40 years, when you didn’t even get to live for five months is so far beyond my comprehension, I nearly puke every time it passes through my consciousness. Alas, in honor our “Secret Society Club” I wanted to do something special to pay tribute to this particular 12th. It met the criteria of being something new, it is also something that will eventually become old. I finally got (the most preciously radical) tattoo. In turn, “your place” on Momma is now officially reserved forever and ever. Just as it should be. No one else will ever call the nook of my arm all the way to the crest of my shoulder their own. All who look will see my Sweet Boy has staked his claim. They will see your name. They will see a symbol of you in fight and in flight. They will see a peaceful warrior transitioning to a warrior at peace: as he passes through the faintest rainbow…and heads straight to the highest layer.

The only tolerable part about October 12th was the weather. It started out cloudy and chilly. A perfect backdrop to stay in bed a little later than planned to see if it would be the day that squeezing my eyes extra-tight would transport me back to my old life. If even for one day. No such luck. When the rain began to strum against my bedroom window, I was convinced the world was as sad as me; so I decided it was safe to face the day. I got to the gym and back before the happy-ass sun decided to come out and toy with my mood. However, it turns out Mother Nature is in my corner after all. And she’s manic too. A few hours later the skies reverted to a dark grey, opened up, and dumped out an unyielding and unforgiving rain. It was a true shit storm. And it made me feel much better. However the greatest birthday gift (outside of you back in my arms) came moments after when a faint rainbow emerged high in afternoon the sky. It was there momentarily. But it was there. You were there.

You and I have always had our very own secret society. Nothing will ever change that; not even death itself. Tattoos and rainbows aren’t needed to prove our love. Our love far supersedes markers and magic. It transcends the parallel universes in which we exist. It is the rare kind of love that truly does last forever and ever. Of this I am sure.

That being said, you must wonder why there are times I’m overcome by such extreme sadness that I stand in the shower just so the water can drown the sound of my sobs and the screams of your name. Or how there can be moments when I’m overcome by such anger that to prevent myself from breaking things, I bury my face into your blanket and scream…to no one at all, that I just want my baby back. I miss you so much that parts of me I never knew existed hurt. And I miss being your Momma (the way I should be) so much that the parts that don’t hurt…are simply numb.

I am doing my best to navigate these unchartered parenting waters of being a Momma from so far away. I am terrified more often than not. I am sad. I am lonely. I am mad. I am so very, very tired. But I am also without another choice. So I push onwards. And I hold onto hope that in the process, I am not letting you down.

1348098844663554

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

Stay with me, Sweet Boy.

xoox,

Momma

a defense lawyer stops me in my tracks. because he knows you.

Paxton,

Tonight I ended what was a very difficult week with a “not-so-happy” hour with two of my lovelies from BCHS. I wasn’t in the mood to be there, but familiar with their persistence in integrating me into the world at-large, I knew it’d be easier to join them. So I did. I made it to about 6:30 before I was ready to leave. As I approached my car, a man parked next to me quickly popped his head out from the backseat of his car where he was putting his child in a carseat. He said, “Excuse me. What does your license plate say?” I knew he was talking to me; but I froze – speechless and paralyzed. He continued, “Does your plate say, Paxlove”? I studied his sincere face and steadfast eyes as I faintly replied, “Yes. Paxlove.” He excitedly persisted, “Is it for Paxton? The baby? The little Peaceful Warrior?” I almost collapsed onto the goddamn pavement.

Before my legs had a chance to give out, he broke into a 40 yard dash in my direction. As he jogged towards me he yielded his “Paxton” bracelet in front of him like a white flag. Meanwhile my friend took over the talking part and proudly proclaimed that I am your Momma. Once in front of me, he put the bracelet an inch away from my eyes and exclaimed (repeatedly) that he wears everyday. He went on to explain how he learned about you and your brave fight. He said he attended PaxFest and donates to your foundation. Most importantly – he told me how he finds daily strength and inspiration through your brave soul.

As I attempted to absorb the scene unfolding around me, I noticed his wife had come out of their car and was now standing just steps behind us. Her hand was over her mouth. Tears were streaming down her face. As our eyes met, we innately stepped towards each other and hugged tightly. Through a tear-filled voice, she told me how you changed the way she mothers her son…and that she marvels at how I find the strength to continue to live without you. These kind-hearted people said so many endearing things to me. All of which I will hold close to my heart for many, many moons to come. The dad ended the conversation by telling me he is a defense attorney and that whenever he is in trial, he rubs his “Baby Paxton” bracelet to find strength and clarity. For he is reminded that whatever he or anyone in the court room is experiencing, or has experienced, pales in comparison to what “Baby Paxton” endured.

The entire time this couple talked to me, I literally did not utter a single word. In hindsight, my inability to speak makes me want to punch myself. I should have taken out my wallet and shown them pictures of you. And told them how everyone who was lucky enough to be in your presence noticed how peaceful (and beautiful) you were. I should have shared with them how (before you were sick and stopped feeling hungry), you would stop mid-suck while eating your bottle, smile right at me – and then happily resume eating. Or let them know your favorite CD is Coldplay’s Rock-a-bye Baby, and that you loved when we would dance around the dining room and sing, “I like to eat, eat, eat apples and bananas.” I should have relayed the stories of how you’d stare into Mr. Cow mirror and “Ooouuuooo!” so fiercely at the site of your adorable reflection that the entire house would erupt in laughter.

On top of failing to tell them any of the many things that make you incredibly special, I deeply regret that I didn’t think to ask them their names. While I hugged the husband, I did manage to eek out the words, “Please don’t take that bracelet off.” (He assured me that he wouldn’t.) With the exception of one simple sentence, I stood mute as two strangers told me how you have changed their lives. In exchange, they allowed me to embrace them as though they each contained a small part of you. I am sorry if I hugged them too tightly. I am more sorry I didn’t tell them about any one of the multitude of things which make you my uniquely perfect Paxton.

Very early this morning I was overcome by one of the greatest moments of despair I have yet felt. I don’t entirely know why. I guess this roller coaster of grief, bereavement, or grief-that-interrupted-the-initial-fucking grief will never make any sense. I do know that I literally begged you to send me a sign if you were still with me. Anything to prove that despite the emptiness in my stomach and the hollowness in my heart, I am not entirely alone in this world.

I believe with all of my heart, you sent that man to me tonight. You rescued me from the abyss of grief which I must consciously ward off from swallowing me whole. More than anything in this entire world, I would give anything – anything – to be the one saving you. It should have been me. Never you.

IMG_0752

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

Stay with me, Sweet Boy.

xoox.

Momma

A Gold Out, a heavy happy, and a Princess Warrior hug.

Paxton.

This week was chocked full of a shit can of mixed up emotions. By now you know the entire community of Brookfield came together in honor of your bright and beautiful life spark. It all happened so quickly that Momma didn’t have a moments notice to catch her breath, much less time to process all that was unfolding. Unbeknownst to me, Nita and Bruce spearheaded a “Gold Out” to raise awareness for childhood cancer. They chose to have the Gold Out this week because it is September…and because it was the biggest game of the year: the cross town rival football game between BCHS and BEHS. I was brought into the loop after the event had taken on a life of its own. But I’m told that within 24 hours of the suggestion for a Gold Out, BC contacted BE – and both schools were on board, BC vs. BE was named WISN’s Game of the Week, news outlets were calling for commentary, social media was buzzing, t-shirts were ordered, and posters were designed. The crescent tides of what would become a fierce sea of gold, were already swelling around me.

I was honorary captain of the game – and a balloon launch, especially for you, punctuated the Star Spangled Banner. The sweetest moment of all, however, could not have been orchestrated. It occurred shortly before kickoff. The sun, which was just beginning to set, came out for the first time all day. Stunning shades of pink, purple, and best of all…gold illuminated the evening sky. All who witnessed it agree: even the heavens above Brookfield wanted to participate in the Gold Out. (I don’t so much believe in heaven. So, I figure it was you and your flock of angels knocking on the walls of the picturesque fall sky to let me know you were nearby.) Hundreds of gold balloons were released; but I was given a special one. It was a brilliant, rich, purple – to match your birthstone. Bruce decided it’d be easier for you to spot the purple, amongst the blanket of gold, and know exactly which one Momma sent up to you.

The synergy created in efforts to bring awareness of childhood cancer, albeit within the confines of my tiny universe of BCHS, gave me more hope and promise than I’ve felt in a very long time. No money was raised, no promises for change were made. Awareness was generated. And, that is all I have ever asked for.

High off the adrenaline of fighting childhood cancer like a ninja, I made the bravest move yet. I met Emily. Emily is a valiant and beautiful warrior princess who kicked Ewings Sarcoma right in the fucking mouth. She fought the same type of cancer you had for over 13 months, endured 5 surgeries. She travelled between CHW and CHP – to ensure she was in the best of care – throughout her grueling protocol. I first learned about Emily through Dr. D right after your diagnosis. Since then, I’ve kept Emily tucked in my heart. But, I never had the courage to seek her out. In fact, I couldn’t even search for her on Infinite Campus. The mere notion of looking into her eyes terrified me. I still can”t explain some of my fears. Though, I recently read somewhere that grief feels a hell of a lot like fear.

In the meantime Emily silently roamed, like a princess warrior in waiting, throughout the halls of BCHS. All the while knowing who I was, knowing who you were…knowing, most of all, that our worlds would officially collide exactly at the right time. Today was the right time. By my request, Bruce brought her to my room. He did not say a word. Emily did not say a word. I, of course, did not say a word either. Words would’ve only gotten in the way. Instead, I scooped Emily into my arms and held her tightly against my broken heart. I didn’t want to let her go. I felt like she’d be better off in my arms – or in my pocket, for the rest of time. But, I figured her mom would feel otherwise. So I put her down. I took her adorable and innocent face in my shaky hands, and told her she was the bravest little warrior princess. Through tear-filled eyes and a quivering smile she said, “You are brave too.” (Oh, Emily. You really are the best little girl there ever was, aren’t you?) We didn’t talk for long because I couldn’t talk…or say anything of consequence. Yet we quickly realized we are, in fact, kindred spirits. Don’t worry Diddy, I won’t let her out of my sight – poor thing will have me creeping in her shadows from now until the end of time. Thank you for sending her to me.

The high of Friday has sent me crashing so low, that I don’t know how I’ll ever recuperate. The fact that I have to parent the son I waited my entire fucking life for by participating in high school “Gold Outs” to generate awareness of the very asshole who brazenly killed him, is simply impossible to digest. You must agree – my existence is all types of messed up. I do have moments of happiness. But when they occur, I almost always lose my breath. Happiness that exists without you is never guilt free. It is certainly not the kind of happiness I had back when you were here. My new happiness comes with a very heavy price that never goes away. This happiness feels as heavy as the absence of you, which is never far from my mind, heart, body, or soul. This happiness is heavy.

The happiness is almost always accompanied by tears. Tears because all of this is too damn much for one girl. Tears over the thousands of kids who are currently fighting cancer. Tears that so many other parents, like me, are left with a dead child due to this crap shoot of a world. Tears that if you survive it’s only because you got ‘lucky’ in a game of Russian Roulette. But when you lose, you lose big time. There are no “do overs” or second chances. No matter how loudly you scream and cry, or call out your child’s name at the top of your god damn lungs because you think if you scream it loudly enough, he’ll come home. (Not home as in fucking heaven, but home as in back into your arms, where he belongs.) Home: as in where you belong with me and should’ve been with me until I was the one old and dying, not you, young and dying while I sat by and helplessly watched you take your last breaths.

I am so grateful for the Gold Out, and the unyielding support the “Little Community That Could”. But I am not as grateful as I am regretful that this is how your life turned out. It was never supposed to be like this, Paxton. I don’t know what went wrong. I just know it should have been me. Never you. No. Never you.

I am so sorry. I am so, so sorry.

This slideshow requires JavaScript.

I miss you. I love you. I hope you caught my purple balloon.

Stay with me, sweet boy.

xoox,

Momma

19 months. today wasn’t gonna be easy…then cancer came back.

Diddy,

Today began much like everyday. I got out of bed, walked down to your room, and began our morning ritual. I whispered the many hopes and dreams I have for you: some old, some new. Each at the forefront of my mind as I face the dawn of yet another day without you. I told you how much I loved and missed you, and explained yet again how I wished a million times over that we could trade places. I shared many other secrets in the spaces in between. All the while searching and scanning the world on the other side of your bedroom window – – just in case today would be the day you’re outside waiting for me to come and rescue you. Then I ambled into the shower, got myself presentable, and set out into the ‘real’ world. (Also known as my ‘fake’ world.) Though I don’t recall the commute, I arrived at BCHS: parked in the spot reserved for me 13-ish years ago, entered the set of doors I’ve pulled on a million times over, navigated the hallways in which I’ve surely worn a pathway, entered my classroom, switched on the lights, landed safely at my desk…and was met by your beautiful face smiling right at me. Then, I exhaled.

I have become very adept at eluding eye contact with the 1300 students which fill the hallways at any given time throughout the school day. I avoid looking too deeply into the eyes of babes who, despite their individual stories and struggles, do not know anything about the dark, grim, gruesome world in which I live. Part of my avoidance comes from sparing myself from the pang which stings my soul when the realization strikes that you will never be in 9th, 10th, 11th or 12th grade, worried about a test, excited about a girl, donned to the nines for prom, decorated as a stud player on the basketball team…the list goes on. The other half, is sparing the kids who should they look too closely into my eyes, will surely end up getting sick and dying. But mostly my avoidance stems from the fact that I know I live in a parallel universe. I realize that no one in that building could ever come close to understanding the aforementioned – let alone a teenage kid. None of those teenagers: with the exception of two, little, lovely Lancers.

I met the older of the lovelies three years ago when she was a freshman. She is a spicy monkey. Spicy enough to be one of my students. Spicy enough to run hurdles to boot. It was during track season that I got to know her best. At the time, I was going through IVF treatments to conceive you. She and her family were rallying around her little brother who was in the final weeks of his victorious battle with brain cancer: medulloblastoma. He endured and triumphed over 56 rounds of chemo and 28 rounds of radiation. I remember the day she brought celebratory bracelets into a team meeting. The night before, her brother “rang the bell” at CHW. (At the time, I had no idea how intimate I’d become with the notion of one day watching you reach up to tug the string on that same bell.) I recall silently sobbing in the coaches’ office as I watched the video she made of her little warrior brother ringing the bell. My tears were those of sheer joy…the sobs I blamed on the assortment of drugs surging throughout my body. In retrospect, I wonder if the world was silently trying to prepare me for matters of which I wouldn’t have understood, nor heeded, had they been emblazoned in neon, flashing lights.

Today one of my closest BCHS friends, who apparently pulled the short straw, sat me down and delivered a brutal message. The little warrior boy, who rang a bell over three years ago, just received the crushing news that his cancer is back. His cancer is back in the same spot as the original tumor…at the base of his brain. His cancer is fucking back. How is this even possible?

One of my new-world survival techniques is compartmentalization. In fact, it is the single most effective tool in my arsenal. I simply cannot allow my real world to overlap with my fake world. That being said, I don’t do “cancer-talk”, “Paxton-talk”, “personal-life talk” while I’m anywhere other than at home. On top of the collision of my two worlds, the nature of this news shoved me right down my ‘isolate to survive’ rabbit hole. The net result left me paralyzed. As tears began to push against the backs of my eyes, and vomit started to creep up my throat, I merely uttered, “This is not good. This really is not good.” Bless her heart and soul, my sweet friend gently replied, “I’m sorry, Danna. I am so sorry.” And the exchange of those two sentences continued on a loop, until I walked away…and “deep six-ed” into my rabbit hole.

Many hours later, and in the safety of my own space, I called my friend. I asked her to make sure this family knew that I will do anything I can to help them – anything at all. I am fully and wholly committed to their every last need. No matter what it is, when they need it…I am here. The offer stands infinitely. She promised she would make sure they knew. And she did.

I couldn’t allow my commitment to this little warrior boy to be my ‘something different’ on the 12th of this month. I forced myself to do something else. It ended up being horse-shit because my heart, which is smashed into 12 billion pieces, couldn’t muster up anything meaningful. Plus it was hella late in the night. For that, I apologize. For committing every last resource I personally have and that your Foundation has generated to this brave and beautiful boy, I do not.

I still have a hard time wrapping my head around my reality, which I know is also the reality for so many other parents across the land who have lost a child. It’s a reality you never get to escape from or take a break from. It’s a reality that is tremendous and cumbersome to carry around – and the load never gets any lighter. But, I don’t ever want my reality to be another parent’s reality. One blonde haired, blue-eyed boy is one too many. How many more need to be spared? What do I need to do to stop cancer from stealing another child?

Please help this little warrior boy. Please help Dr. Jogal, Dr. Firat, Nurse Renee and the other all-too familiar cast of characters at CHW who compose his Dream Team find a way for him to (once again) defy the gruesome odds. Please help him find his inner-warrior strength and reign triumphant over medulloblastoma, a PNET sarcoma, which has yet again declared war inside his sweet, innocent body.

IMG_0581

I miss you each and every day, I truly do. But today I’d especially have done anything to have been able to rush home, scoop you into my arms, and plant a kiss atop of your innocent, beautiful head…as I thanked the angels everywhere for letting you be born healthy and happy.

I am so very sorry you got sick. I will never, ever stop asking why. I will never, ever stop fighting either.

Stay with me, sweet boy. Stay with the little warrior boy too.

xoox,

Momma