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

 

 

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a grocery store. a bathroom stall. and a promise. like all good things – it ends with wine and gummy bears.

Diddy,

I hate grocery shopping. It is the stupidest concept on the planet. Let’s talk it through. You drive to the store, grab a cart…if you have my luck, the cart has a wobbly wheel, a sticky handle-bar, and/or a mind of its own. Only after spending five minutes pretending you aren’t irritated by the wobbly-wheeled, sticky handle-bar cart, you finally ditch it. Normal people, who shop for normal sized families are forced to search for another cart. Not your Momma. I just turn on my super hero powers and carry everything I need for the week in my tired arms. I digress. Then you walk up and down aisles, taking items off shelves and placing them into your cart. Just when you think the up-down-up-down is over – you remembered an ingredient you just can’t make that casserole without, so you loop all the way back to the first aisle.  Then…you stand in line.  You often stand in that line longer than it takes you to drive there – and home. Next, you place the items onto the checkout belt. Only to then pack the items into bags. You then take the 50 bags of food – that easily could’ve fit into 6 bags, and put them back into your cart.

You wheel the cart to your car, and unload the 50 bags – which could be six, into your trunk. Then, you drive home. (You consider stopping for a drink to award yourself for a job well done, but you quickly remember your cash flow has just been spent on stupid food, which is in 50 stupid bags, in your stupid ass trunk – which you now hate even though it is an innocent by-stander in this whole stupid excursion.) So you just drive home. When you arrive, you take the bags inside. Even though you should take four trips, you insist you can make it happen in two. A dented can of beans and a leaking milk jug later, you curse yourself for trying to be Shera, queen of the grocery bag carrier, again.

Next up: you spend 20 minutes putting those SAME items you removed from shelves in the store, back onto shelves in your kitchen. It.truly.makes.no.sense.

Your Nana maintains that she’s never seen anyone more content with going hungry than having to obtain and make food. I will point out, I made more meals during the 8 weeks you and I were home on maternity leave than I did the combined 37 years prior. It’s fine. I was just waiting for the ‘know how to cook a meal’ gene that emerges after women have children. I always knew it would come.

This weekend, the whole ‘eating to survive’ thing trumped my distain for grocery shopping. So off to Sendick’s I went. It only took moments for me to realize I just didn’t have the energy to go through the motions of doing normal things, that normal people, with normal lives, and normal families partake in without blinking an eye. To buy myself some time, I ditched my cart…even though it wasn’t wobbly – and headed to the bathroom. I locked myself behind a stall door and attempted to give myself a pep talk. Before my first deep inhale, a mother and her toddler son entered the bathroom. I wanted to flush myself down the toilet.

I am assuming the little guy was about 3 years old – I never did get a look at him. His mommy was insistent that he go ‘potty’ alone, while she stood guard outside his stall door. The encouragement required to get him to agree to this arrangement was beyond endearing…and beyond heart-breaking. In the end, his mommy’s authentic support convinced this little guy that he was brave enough to ‘be a big boy’.  No sooner did his stall door close – did he began to rattle off questions.

“Mommy?”

“Yes, honey.”

“Are you still there?”

“Yes, honey.”

“Mommy. Mommy? Are you waiting for me?”

“Of course, sweetie. I’m not going anywhere.”

“Mommy…don’t leave me.”

“Sweetie, I will NEVER leave you.”

….pause, pause, pause.

“Never?”

“No, sweetie. Never.”

“Mommy, you won’t leave me…even if you die?”

(Audible gasp…Though, at this point, I still can’t say for sure if came from this little guy’s Mommy – – -or from me.)

“Of course not, honey. Not even when I die.”

“Mommy, if I die – I won’t leave you either. Because I don’t want to ever be away from you. Not even if I die.”

I am certain this mommy heard my stifled sobs, which were nicely echoing off Sendick’s, barren bathroom walls. It took all I had not to charge through the stall door, grab onto her shoulders, look through her eyes, and straight into her soul – while begging her to never, ever let her dear boy go.  Never. Not even for a second. Not even to encourage him to be a big boy and use the bathroom on his own. But, my legs wouldn’t have worked if I wanted them to.

There have been many times in the last 20 months when I’ve known you’re with me.  Other times I think it is you – but, I find myself wanting ‘more proof’.  Today falls under the former category. After all, only you would come with me on the most dreaded errand of all time, and follow me right into the grocery store bathroom – to make good and sure I knew it was really you.

The fear that management would be beckoned to check on “…the crazy woman hyperventilating in the Ladies’ Room” propelled me into action.  I swung the stall door open, threw water on my face, avoided eye contact with the reflection of the stranger who so often greets me in the mirror, and fled for safety. I quickly realized I was in a god damn grocery store…making it not so safe and cozy after all.

I ultimately left with two of the 24 items on my list: gummy bears and wine. There’s always next week.

I miss you. I love you. I would have packed really good lunches for you.

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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

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

Diddy,

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

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

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

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

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

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

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

Stay with me, Sweet Boy.

xoox,

Momma

A 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.

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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.

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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

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

Hi Diddy,

I made it back to Wisconsin.

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

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

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

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

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

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

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

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Stay with me, Sweet Boy.

xoox,

Momma

Be Peaceful.

Sweetest Diddy,

An early morning trip to Target proved to be far more significant than Momma’s run-of-the-mill trips to Target. With only a few things to pick up, and a surplus of time to spare, I began to amble mindlessly through a store which, once upon a time, was as familiar to me as our backyard. Ultimately, I found myself in the middle of the “happy home” isle. I almost screamed out loud, (but didn’t – so don’t be embarrassed) when I found the candle I have been searching high and low for since last April. To the rest of the free world, it would seem there is nothing extraordinary about this candle. It is a typical Target something-or-other-brand aromatherapy candle. The name however, a bit more special, ‘Be Peaceful’…which is what compelled me to initially buy it. I found it on my first “away from home” trial in very early March. I wonder if it were exactly one year ago today? At any rate, I remember your Daddy making me leave the house without you in tow. He said I could go wherever I wanted, but that I had to be gone a minimum of twenty minutes. Prior to you becoming a part of my life, a twenty minute errand was nearly laughable, given my trademark ability to turn a five minute errand into a two hour escapade. Nonetheless, I took the challenge.

In lightening speed, I secured formula, a double pack of Dr. Brown’s bottles, and a tube of “Butt Paste” (recommended by Dr. D.). I turned to head home, but realized I had been gone about 7 minutes. I anxiously made a quick right turn down the “happy home” isle….where I spotted the ‘Be Peaceful’ candle. I instinctively, and giddily, added it to the must-haves-for-Paxton basket. Unwilling to suppress my angst of being away from you, away from my family, a minute longer – I headed to the Express checkout, paid for our stuff, and drove home…without stopping to look both ways. I burned that candle, almost daily, until approximately the middle of April. When I noticed it was almost gone, I began my search for another one. I checked multiple Target locations, Target online, and eBay; but was unable to find another one anywhere. Knowing it was ‘running’ low – and with no replacement in sight, I began to burn it more sparingly. Then May happened.

Finding the ‘Be Peaceful’ candle today, initially, seemed so very serendipitous. It is, after all, March 2nd. Today marks 8 months since I rubbed my lips across your perfect head and silky hair, held you against my chest as we slowly breathed in tandem, and felt the warmth of your gentle – but steadfast – fingers circled around my thumb. To my surprise, the more aroma that fills the room, the more sadness fills my heart. Our sense of smell is 10,000 times more sensitive than any other of the five senses. The recognition of smell is immediate. While other senses (touch and taste) must travel through the body via neurons and the spinal cord before reaching the brain: our olfactory response is immediate, extending directly to the brain. The emotional connections and the memories attached to a smell are always deeply personal; it seems a familiar smell is oft intrinsically enmeshed with the individual experience.

As the scent of the candle replaces the air in the room, I can almost teleport myself back to last year on this very day. Although smell is the strongest of the five sense, I can remember them all. I hear college basketball steadily as a fixture on our t.v. – but not too loud – because we were listening for the coo of your voice. I see you contently asleep, while swaddled (extra tight, like a cigar) in my arms, or in your bassinet – which we moved upstairs and downstairs depending on where “camp” was determined to be for the next several hours. I taste the sweet flavor of your formula, as I test a drop from my wrist to make sure it is just the right temperature. I feel the unabridged happiness, unexplainable contentment, (no doubt the newborn induced sleep deprivation); most importantly I feel the good, sweet love that filled every last inch of our home.

Needless to say, since ‘Be Peaceful’ has permeated throughout our home, the scent has evoked an unanticipated array of emotions. The sadness and yearning which have flooded my heart are not only due solely over the loss of you – but also over the loss the family who lived here – just last year. It does not seem plausible that the only thing that remains the same about our little family, about our quaint home, about our happily-ever-after … is the familiar scent of a candle.

Sweet boy, I do not know how all of this has happened. What I do know is that if I could fix even one part of it, I would…in a heartbeat, I would.

Momma. Alone.

I hope you are safe. I hope you are peaceful. Please be happy, little one.

Stay with me, Sweet Boy.

xoox
Momma

Call my understudy – this role sucks.

Paxton,

I think today was the perfect day for me to have stayed in bed and boycotted my participation in the real world. I hated every second of today – starting with saying good bye to you while scanning your room and (yet again) being bombarded by my unbelievable reality …cruelly reinforced by the sight of your freshly-made crib, abandoned ‘size one’ diapers, and deprived, staged stuffed animals.

Because everything about today would only make me say swear words on top of swear words, I need to skip telling you about it. I made a promise to myself that I will keep my swearing to a minimum in each entry. At least, I promised myself I would try.

Over the weekend I solidified a starter-plan for your first birthday. I think it may have been harder than planning your memorial. Aunt Lala and “Magic Meg” did most of the planning for your memorial – i.e. “the most fucked up day that should never have had to happen”. I was in shock, merely watching myself in a (very bad) made for t.v. movie…as I blindly assumed a lead role, which I never tried out for, much less reviewed the script ahead of time. Thank goodness for Lala and the entourage of lovelies in her wake, for I know not how we’d have pulled one minute of that day together. At this point, the shock of your absence has worn off; but the reality of it is just not setting in. Regardless, I simply cannot NOT participate in planning my baby boy’s 1st birthday. Other than the day you were born, this is a day I have looked forward to for as long as I can remember. The “dysfunction” of planning a birthday for my only child, who was stolen from me (after being slowly tortured) by cancer…at the age of 20 weeks and 1 day…is not lost on me. I get it. It’s unnatural. It’s unbelievable. It’s unorthodox. It’s kind of like your 12 week old son being diagnosed with cancer. So, between you and me Paxton, I certainly hope people hold their judgements about my ‘psychological instabilities’ behind having a birthday gathering for my dead child for someone who gives a shit. I’m unwillingly trapped in a D-List version of my old life. If my behavior is so disconcerting that anyone feel it necessary to psychoanalyze my motives in group talk, or generate phone tree conversation to concoct the best way to approach me with their ‘loving concerns’…I urge them to take a less circuitous route – and call my agent. I cannot, will not, simply refuse to allow your birthday to come and go without proper recognition. You are my baby; you also happen to be my hero. Therefore, you deserve the very best. And, the very best you will get.

Daddy and I decided we would like to remember the happiest day of our life (the day you were born) by gathering all your special earth angels for an afternoon of quality fare, sweet melodies, fond memories, pure love…and, of course, some therapeutic libations too. As you watch us come together, I hope you will recognize we do so not because of any one of us has the strength, will, or desire to overcome the fact that you are gone. Rather, we come together – despite your absence – because we are collectively driven to remain united through the strength of your spirit, courageous of your soul, and purity of your love. Diddy, you alone have the ability inflict a change in this world. I have told you this before; yet, I realize that because I am your Momma, you assume I couldn’t possibly know what I am talking about. You just wait and see, little boy. Your birthday gathering will be beautiful – and powerful…much like you. Afterwards, when Momma proves, again, she knows ‘what’s what’, you and I will talk about other plans I have for that uncanny power of yours. Don’t worry baby, I will be with you every step of the way. You and I are in this ‘change the world’ thing together.

It is time for me to go up to bed. Daddy went up almost two hours ago now. I am beyond tired, yet dread ending the night – much for the same reasons I dread starting the day. I will walk in your room to kiss you good-night, touch your warm little head, pull the blanket you kicked off back up across your tummy, whisper in your ear how proud I am to be your Momma…and sneak as many kisses onto your cheek before (accidentally) stirring you awake (and getting in trouble with Daddy). Instead, I will be met by the familiar heavy silence and somber absence which greeted me this morning. Intellectually, I (almost always) know it’s coming. It takes my breath away nonetheless.

I miss you. I love you. I hope you are warm enough.

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Stay with me, sweet boy.

xoox

Momma