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

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She’s got a way….each and everyone of them.

Hi Sweet Diddy,

I arrived at Britta’s yesterday morning. I can’t remember a time I’ve ever been more relieved to be with one of my most special lovelies. Britta moved to Northern California almost one year ago. In fact, her move – her new job – her trip to India – were all delayed because she stayed in Milwaukee to be by my side after July 2nd happened. Despite all the new wave, unspoken expectations which come with the territory of a woman determined to climb her way to the top of a male-dominated business world – Britta adamantly refused to allow the pressures of a new, big time, high-profile job to call her back to California. In hindsight, Britta’s commitment to us, when we needed her most, is not unusual at all. Her priorities have always been family and friends. Her heart is as giant as it is genuine. So, Britta stayed. She stayed and helped Lala make a slide show and a playlist for your memorial late into the night. She took me, in a catatonic state, and held my hand as I ambled through Mayfair to find a dress for your memorial. (I didn’t end up wearing the one we got that stupid day, because the “most perfect one ever” arrived moments before the very last second. But only after first being trapped in the Colorado hellfire’s. Despite my zombie-like state, irony of such nature was not even lost on me.) The morning of your memorial, Britta came to our house. She sat me in our downstairs bathroom and did my make up and then my hair. When it didn’t seem possible she could do more, Britta executed the greatest challenge of all time. She readily agreed to read the letter I wrote you at your memorial. And, she did so bravely and beautifully…just like you.

In the past year, Britta has taken yet ANOTHER big, fancy, baller, shot-caller job – and moved again. One day, this girl will run the world; or marry Luda and have babies a plenty. Whichever she decides on first. Needless to say, I haven’t had the energy or the courage to make the trip out here sooner. She & I decided it was imperative, however, that I work in a pit stop while on my nation-wide tour for peace. In the planning, we realized this summer marked 20 years of being friends. (Yeph. Britta is old, huh?!?) As you know, Britta inherently possesses the synergy to generate fun wherever she goes. With the realization of our 20 year anniversary added to the mix, I have a feeling this visit is about to be ah-mazing. Britta has plans galore in the works. All of which I’m sure will prove to be a mother load of fun. And I will do my very best to allow the “happy” to seep through. But as you know, sometimes I get so tired and so sad – I feel happiest just sitting quietly in the company of someone with whom I feel safe (i.e. Britta).

I haven’t seen much of the city yet. But I can say with confidence it’s hands-down my favorite of the four places she’s lived since she moved to California five years ago. Upon my arrival, I was met with a package which was delivered to Britta’s house. It was waiting for me on my bed. (Fresh flowers and bottled water were also at my bedside.) I digress. I was mystified because in my grief-stricken + heart-broken haze, I didn’t even know her address – much less figure anyone else would. For some reason, I wasn’t surprised to find the package was from Grace. Knowing my plan to arrive at Britta’s on July 3rd, Grace contacted Britta and arranged for a special delivery. Along with a beautiful card, which I will keep forever and ever, was a “July 2nd shouldn’t be July 2nd” gift: healing-bead bracelets…giraffe patterned, with an angel wing charm to boot. I love the bracelets. I love Grace too.

I love all my special lovelies, Paxton. I’ve always said I have the very best friends on all the planet. But, the past year has proven this to be less of an opinion and more an undeniable fact. Without my most special lovelies, I would not have made it through July 2nd. I would not have made it through May 8th….or February – all of fucking fuck February. I would not have made it through March, April, May or June either. I wouldn’t have made it through many dark days and endless, terrifying nights in the confines of the last year.

Maybe each of my girls was strategically placed into Momma’s life along the way? Perhaps someone far, far wiser than I has know all along that there would come a time when I ‘d simply be unable to push through one more day without the borrowed strength and bestowed grace of these brave souls? Not one time, did the love and support of these girls waiver. In fact, they did not as much flinch.

Paxton, Momma’s girls share a sisterhood so sacred it is almost unspeakable. They know what I need, and what I don’t need, without me having to say a single word. These girls are the truest form of unconditional love. This is why after the shit storm of my life, I still feel lucky and blessed. So very blessed. Was it is you who placed each of these girls in my life’s path? After all, our souls have known each other before this life….and we will know each other long after this life. Isn’t that right? Yes. In fact, as I write this it makes perfect sense; it was you. Thank you so much. I don’t know what I would do without each and every one of them.

Most of all, thank you for being my son.

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Here is your lullaby for tonight. It will forever remind me of the special lovelies you’ve sent me along the way.

Sweet dreams, My-My.

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

Stay with me, Sweet Boy.

xoox,

Momma

Three hundred and sixty five days. I still just want you back.

Paxton,

July 2nd happened. It was hard. It was painful. It was scary. It was sad. I did not die. I wanted to. But I didn’t. In fact I spent most of July 1st pleading – to no one in particular – to please let me die before morning. Alas, July 2nd came. And I had no choice but to face the one year anniversary of the last day I kissed your beautiful face and held your tiny, sweet hands in my own. To make matters more difficult – it was sunny, warm, and bright outside. It was as if the atmosphere took happy steroids and some invisible force catapulted me into a vibrant backdrop fit for a post card. Surrounded by quiet air, blue skies, green trees and wide open spaces – I couldn’t have felt more vulnerable if I had tried.

What I had been busying trying to do was shift my paradigm of thinking about July 2nd. For months, I spent a good deal of time and energy convincing myself that pieces of July 2nd hold a silver lining. After all, it is the day you ended your brave and gallant battle. It is the day you stopped feeling pain. I told myself time and time again, July 2nd was your very own personal day of liberation. I did my best to prevent July 2nd from simply being “the day my son died”. To help ensure the focus was not solely on the sadness in losing you – but also on carrying on your fight – I even declared July 2nd as National FU Cancer Day. My family, friends, co-workers, and many other special members of your adoring ‘fan club’ joined my pseudo movement. Despite Momma’s very good intentions, July 2nd proved more heart-wrenching than I could have ever anticipated.

I intentionally spent much of the day entirely alone. There is simply no one left in my life who knows exactly what happened in those final days…and final moments with you. I didn’t feel like faking it with my well-intended and kind-hearted friends and family. Maybe I should have. But, I didn’t. I ran away. I ran away to a place I’ve never been, where I knew absolutely no one. And there I stayed for precisely two and a half (2 1/2) days. I spent nearly the entire time searching for you…and, also searching for slivers of peace and slices of resilience. There were moments when I felt you with me: absolutely undeniably with me. And others when I felt like you were millions of miles away.

Back in Milwaukee, my very best lovelies and some of my closest family threw an epic “Celebration of Paxton”. To no surprise, they went over the top, bonkers to put together a celebration fit for a prince. (You are most certainly worthy of an affair of such nature.) Their ultimate goal: to send you love in such abundance, that you couldn’t miss if you tried. Rainbows and love served as the theme of the celebration. Each of those lovelies painted their nails a certain color to reflect the colors of the rainbow. (Broph even did hers as clouds!) They also made sure to paint their middle fingers gold…extra, sparkly-gold just for you. The extra-sparkly-gold middle fingers were used to send cancer a whole-hearted, united, resounding “FUCK YOU”. They sent that off at the part of the day they were feeling spiciest. The kids painted signs – outfitted with giraffes, balloons, rainbows and most prominent of all: your name. The adults recounted stories of your smile, your wonder, your innocence, your bravery. Music played, libations flowed, laughs echoed, tears fell. At the end of the night, when the moon illuminated the warm, summer sky, each one of those good people sent a wish lantern, full of good, sweet love, up into the sky for you. (***Lala’s was so chocked full of kisses, she wasn’t sure it would get off the ground.) I imagine you watching it all. I picture you smiling when they pulled out their inner-gangsta and gave cancer their gold-sparkly-middle fingers. I hope you felt all of their love, Diddy. Most important of all, I hope you know their love exists for you EVERY day. Not just on the day that marks the anniversary of the day you decided to end your fight.

Towards late afternoon, Momma met up with a new friend. She and I have had plans to unite for months. We met through childhood cancer; which we hate. But, we decided to be friends on our own; which we love. She lost her beloved son to cancer 26 months ago – just before he turned four years old. His name is Ronan. His mommy’s name is Maya. A few months ago, Ms. Maya was kind and gracious enough to invite me to her childhood home to spend some time with her on what she quipped as “…that horrible, awful day”. She explained how she and her family run away on Ronan’s “Death Day” too. The first year, she wanted to get as far away from the place Ronan died as possible. So her family headed to Boston. However, when they got to Boston Ms. Maya had a very difficult time. It turned out her tummy didn’t feel right in Boston. In fact, “…she fucking hated it.” She asked her strong and kind husband, Daddy Woo, to take her to Maine instead. So he did. It was reassuring to learn I wasn’t the only Momma who needed to run far away from the place I was on the day you were taken away from me.

In fact, so much about being with Ronan’s mommy was helpful in getting through the day. She knew all the things I was thinking before I could even get the words to come up my throat and out of my mouth. She talked softly, and slowly. She was thoughtful with her words, and compassionate with her eyes. Ms. Maya took me to a beautiful restaurant which held special meaning to her. When I couldn’t eat, she was unfazed. She simply placed her hand atop mine and said, “It’s okay, Momma. You tried.” After my non-meal, we went to a magical place tucked deep in the heart of the city. We spent nearly three hours there. We walked all about the grounds: sometimes talking, sometimes thinking…sometimes crying, sometimes smiling. The entire time each of us staring far off into space. Although we didn’t say as much, it was obvious what we were scanning the skies for: our “Lost Boys”. It was at this magical place where I especially felt you with me, Diddy. Did you see me? Was that you? (I’ll never stop hating that I have to ask these questions.)

When we parted ways, Ms. Maya and I ended our visit, the same way we started it: by hugging…and sobbing. Hating what brought us together…but, grateful we were brought together. I gather there is a secret society amongst we unfortunate mothers who know first hand the gruesomeness and helplessness – which magnifies the enormity of the loss – of watching your child wage a war against cancer. In each other, we found someone who shares the same rage over the lack of awareness about childhood cancer, and also the same passion in bringing about real change to the world of childhood cancer. We also found a slew of other things we have in common – which are more light-hearted and girlie. But, for now, those are secrets for only Ms. Maya and I to hold. Late in the night, Ms. Maya called to check on me. Among other things, she said, “I’m sorry we are going to have to be friends forever because of this. But we are. I love you.” Thank you for sending her to me, Paxton. (You always send me the best ones.)

So there it is, Diddy. July 2, 2013. It was nothing like I wanted it to be, nor like I imagined it would be. If I had control of any of the major changes in my life – I’d have switched so many things about the day. However, as irony would have it…I found a sliver of peace and a slice of resilience by running off to an unfamiliar place, to spend the scariest day of my life alone, and the rest of the time with a girl, who was once but just a stranger.

I miss you. I love you. I ache for you in every cell in my being.

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Stay with me, Sweet Boy.

xoox

Momma

big things come in little packages.

Hi Diddy,

The past few days have been filled with activity. I’m still on my nation-wide search for peace. Which makes the “filled with activity” somewhat counterintuitive. That’s pretty typical for your Momma, I guess.

Speaking of activity, I’ve been running a lot. Mostly because I haven’t had a gym I can readily go to for months. So I do ninja type things using my body’s resistance and I run. As for the running thing: it turns out I like to chase people. Not in a creepy, killer way. Rather in an “I can catch you” way. Your Momma has somewhat of a competitive side, what can I say? It’s been doing wonders for my pacing. I have a few different routes, depending on my mood and on my legs. There are hills everywhere, and some days I swear someone replaced my legs with Clay Matthews’ legs. Anyway, on my short, non-hill route, I turn around when I hit 12th street. I’ve been trying to hit 12th street, at 12 minutes for two weeks. I finally did it this morning! I also clocked out the distance….exactly a mile and a half. If you do the math, that translates into an 8:00 minute mile. Pow. Your Momma may be old, but she’s slowly getting back into fighting form. I don’t think I could keep up an 8:00 minute mile pace for 4 miles or 5 miles. Unless of course I was chasing people, or just trying to impress you.

While I run, I am always on the lookout for signs of you. It seems like I receive the best ones, when I am not trying so hard to find you. Yet the other day, I stumbled upon one. Literally. On the side of a dilapidated, vacant building, there was a painting. It was a simple compilation of wild flowers and colorful butterflies. Within the collage, in blue paint, were the words, Baby A. It took my breath away. My entire pregnancy you were Baby A – short for Baby Andrews. We didn’t want to find out if you were a boy or a girl until your grand reveal. For the record, I knew you were a boy. In fact, I was so confident that I secretly bought a few boy clothes before I was sentenced to bed rest. (You never got to wear those outfits. It breaks my heart whenever I look at those in particular.) You will always be my sweet Baby A.

The Baby A sign pales in comparison to the run where I found the most amazing thing. (That’s for Ms. Britta. She can’t stand the word amazing. In fact, her crazy daisy self sent me a text at some absurd hour to tell me ‘amazing’ has now surpassed ‘moist’ and ‘luscious’ on her most hated word list. You can agree that’s a pretty serious claim.) I digress, I was half-running across a street when I spotted an object lying in the middle of the street out of the corner of my eye. Sophie! I pivoted, lunged forward, and scooped her into my hand within half a second. I turned in what seemed like 112 circles. No one was in sight. Not a soul. I didn’t know whether to laugh or cry. So, I did both. I clutched Sophie in my sweaty, shaky hand, and carried her with me for the rest of my run. The entire time, my mind raced. “The little-little who dropped her must be so entirely sad.” “I have to find the little-little.” “Paxton would be so happy if I can get her back to her rightful owner.” I went back to the scene of ‘Rescue Sophie-Two’ at the end of my run, half expecting to find a frantic mom scavenging the streets for her. I envisioned the relief on her face when I handed Sophie-Two to her, and planted a kiss on her little-little’s forehead. But, no one was there. With a heaviness in my heart, I took Sophie-Two home. She has been hanging out with Giraffey and Little-Tiny-Bear ever since. Until you whisper exactly the right thing to do with her, Sophie-Two will stay with us. We will take extra special care of her.

In even more exciting news, I connected with a long lost friend a few days ago. I haven’t seen her in 16 years; but that hasn’t stopped her from being one of your ‘Super Fans’. Little Cary has demonstrated stead-fast support for you, in ways both big and small, since last May. Truth be told, my dear, kind, generous friend just happens to have one of the biggest hearts on the planet. After learning she lives in the area, I decided to go out on a limb and send her an email. Unbeknownst to me, LC had just gotten home from work and was going through her mail and email. That afternoon, she received a letter from the museum asking for her annual pledge. LC threw the letter in the garbage. As, she had already decided in lieu donating to the museum, this year she would be donating to the zoo – specifically to the care taking of the giraffes; in honor of you! Moments after her “donation rotation” decision, she opened her email and found the message from me. She is confident this chain of events was not serendipitous. I have to agree. Without pause, LC and I had solidified plans to reunite the next morning. Upon sight, she wrapped me in her arms, and hugged me good and long. Just like that, it was as if no time had passed since we were last together.

A day of non-stop chatter, evolved into dinner, and rolled right up to night-time. LC has something big in the works to help us honor you, Paxton. That woman may be “little”, but she packs a punch. I know she will do whatever she can to lead the “Charge” in helping Momma put childhood cancer on the map. There are one (or two) other very little things she’s trying to help Momma secure as well. All in good time, Diddy. Your Momma has certainly learned how to exercise patience in the last two years. Nonetheless, I am so inspired by LC’s fierce passion for you – that even if nothing materializes, my heart can smile knowing you have another Super Mom who is intensely committed to helping you live on, and to seeing that childhood cancer is put firmly on its ass.

This afternoon, I am heading out to spend the weekend with LC’s family. Somehow, their hearts are even more beautiful than their beloved, adorable son. I am looking forward to being surrounded by familiar faces, warm love, and good souls. I will be sure to keep you posted on the things we get ourselves into. LC already has one plan for Momma. She is able to get me into one of the most beautiful and serene Hindu Temples. She thought it may provide an opportunity to feel closer to you…perhaps, find a sliver of peace to put inside my heart. Peace. It is precisely what I am in search of after all.

I carry you with me everywhere I roam.

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

xoox,

Momma

songs. signs. and a very silent storm.

Paxton Bowe,

Yesterday, I spent the better part of the morning driving through the city, soaking in the beauty of newfound surroundings, getting lost and then getting found. Normally, the times I was lost would have frustrated me and (inadvertently) lead me to swear at idiots who cut in front of me, and whip-off even bigger idiots who insisted on driving slow in the left lane. (Right after conquering cancer, I’m coming after slow-left-lane drivers.) However, you and your Busha keep me both comforted and amused. Calmed into in a blissful haze, I continued to explore. In the confines of four hours, on several different radio stations, I heard: “Somewhere Over the Rainbow”, “What a Wonderful World”, “Brown Eyed Girl”, and “Yellow”. Each time another song came on I called your Lala. With each call, she broke into her trademark, barely audible giggle. Through a tear-crackled voice she’d proudly proclaim, “He’s such a good boy, DD.” Yes. Yes, you are Diddy.

Knowing Lala was in the loop, you made sure to include her in the fun. Just when I thought you were done for the day, Lala called to tell me “Brown Eyed Girl” just came on the radio in her car all the way over in Milwaukee!

However, the most profound “musical moment” happened as I was finishing up my evening run. A song titled, “Storm”, by Lifehouse came onto my iPhone. I don’t know how it popped into my queue; I am certain I’ve never heard it before. In fact, I really don’t recall ever adding any songs by Lifehouse onto my iTunes. As the lyrics played, the world around me came to a standstill: my body paralyzed: my insides numb. The only thing that seemed to have any movement were the chills that rose to the surface of my skin, and the tears that streamed down my face.

You sent me a perfect compilation of songs, baby love.  Now that I know music is  one way you tell me you are with me, the melodies filled my broken heart with remnants of you. Like most things which involve having to parent you from so far away, receiving the songs made Momma equal parts happy and sad. Happy you are sending me signs, even more happy you are with me. Sad because you shouldn’t have to ‘send me signs’ to let me know you’re near. You should amble over to me, outstretch your little arms, and hop right up into my lap. Nonetheless, I enjoyed our day filled with secret messages. I think I smiled more during that four hour excursion than I have in the last four days combined. However, the song by Lifehouse has rested heavy inside of my heart. How it got on my iPod and came into rotation – on all days – seemed too serendipitous to be merely a coincidence. I believe it was to provide me with a vehicle to reciprocate your beautiful efforts, and send you a song.

If art were ever to imitate life, mine is reflected most perfectly by this song. Much like having you, and subsequently losing you – this song is one of the most painfully beautiful things I’ve ever heard.

This is your lullaby tonight. May the lyrics fill your heart with reassurance that there is nothing I would rather do than be exactly where you are. Nothing I rather have than you wrapped in my arms. Nothing I would rather hear than your squeaky voice. Nothing I would rather see than your adorable face. Close those baby blues and fade into a peaceful slumber – Momma is right here.

I miss you. I love you. Sleep tight.

Stay with me, Sweet Boy.

xoox

Momma

Father’s Day sucks. Walgreen’s sucks more. Cancer sucks most of all.

Diddy,

How is it possible that two whole weeks have elapsed since I last wrote you? I guess so many things have been unfolding in my life, that the days continued to pass by without me really knowing which end was up. Despite the buzz of activity, the ache of your absence has not dulled – not even a little bit. You are the first person I think of before my eyes open each morning, and the last person I think of before I fade into a semi-slumber each night. I think of you at least one hundred times in between sunrise and sunset as well.

The end of the school year has arrived; in turn, summer has officially commenced. It makes my throat tighten when I spend too much time thinking about how we should be spending summer. Can you imagine how super-duper excited we’d have been to be together every moment of every day? No work for Momma. No day care for Diddy. The Dynamic Duo would have spent our days ruling the world. Even though you are not here physically, you are with me wherever I go.  I have always heard that having children makes you see the world in a whole new way.  Nothing could be more true. My entire universe was altered when you came into my life, and made me a Momma. I view the world in a far different way than I knew possible. I have slowed down to better absorb my environment; I pay attention to the wonder around me; I notice little things, and ignore big things.  Most of the time, I think about how you would interpret what I see, hear, and smell. I picture you smiling at passer-bys, waving at puppies, pointing at airplanes. I see you running through grassy fields, and tiptoeing through warm sand. I imagine your raw excitement and genuine curiosity in new surroundings. I revel at the notion of your innocence in everything you touch and everything you do. Wherever I go, I carry you with me Paxton.

Yesterday was Father’s Day. Like most ‘holidays’, or notable days, in my head I remove the word “Happy”. It was not a “Happy Father’s Day”. Let’s be real and call it what it is: “Father’s Day sucks ass when your only child is gone.” Maybe I should embark on creating a new line of greeting cards for bereaved parents? Every time I see a card for the “Happy” holidays, I want to tear them in half and stick a piece of chewed gum inside. Our little family should have been together celebrating the absolute honor and sheer joy of Daddyhood.  Alas, we were not.

I spent a big part of the non-happy day replaying and rehashing Father’s Day last year. We were discharged that morning. As with all “discharge days”, equal parts excitement and anxiety filled my bones.  You were wearing your Ado(red), red, onesie from the Gap, and you were extra smiley. It was as if you knew that it would be your first and last Father’s Day with your Daddy, and you made sure to turn on all your charm.  In hindsight, it makes perfect sense: that is quintessential you – the ‘Peace Bringer’.  Father’s Day marked the last time we would leave the hospital with you in our arms. Father’s Day also began the stretch of time that Walgreen’s pharmacy began to further torture you. Because they are the biggest asshole fuckwads of all time, they filled a prescription which they had no business, and no knowledge, in filling. They did so merely to do what they do best: make money through preying on consumers who are in dire need of their of over-priced, inaccurate, ill-preppared prescriptions. (Don’t believe me? Do some research.) Going into detail will only further incite me, and make my stomach turn inside out and come up my throat. Just know this, I still haven’t stepped a pinkie toe into one of their establishments.  Despite their Monopoly build-a-store-on-every-major-street-corner-in-America business approach, I swear to you, I never will again. I still do my fake spit…twice….every God damn time I see a Walgreen’s – which is a lot because as I said, they’re on every blasted corner in America. I get the most satisfaction, however, when I run down Oklahoma and do an actual spit onto the driveway of the very Walgreen’s that royally screwed up your prescription. In fact, I start to save up all my spit once I pass under 794…as soon as I hit the property line of that wretched place, I hock the biggest, gooey, wad of runner’s spit right onto their punk ass driveway. I hate them.

I digress, last year on Father’s Day, Erin and Dan helped you and I set up a surprise for your Daddy. They stashed a cooler full of Bloody Mary mix, vodka, hella fixings, a 12-pack of beer, and snacks to boot. In hindsight, my behavior was glaringly unacceptable. We were enjoying a Bloody Mary – and cancer was raging throughout your tiny body. When I think of how oblivious I was, I want to throw my head against a wall until I’m unconscious. I will never forgive myself, Sweet Boy. Never in one million years. I can’t imagine the pain you endured every single hour of every single day. I cannot fathom the agony that filled your little bones and tiny limbs. You couldn’t say, “Momma, my head is pounding. My tummy is sick.” or, “Don’t hold me that way, it makes my arm hurt. This way makes makes me dizzy.” All you could do was whimper and cry…and let Momma fumble all around trying to guess what you were so desperately trying to tell me. I’m sorry I guessed wrong sometimes. I’m sorry I made you eat when you were nauseous. I’m sorry I covered your eye with that patch. I’m sorry I put Biotine in your mouth, and made it hurt worse when it didn’t help at all. I’m sorry for all of this Paxton.

I will never stop asking, “How?” “Why?” “When?” “What if?” I just will not. I don’t care what anyone says. I won’t “get over” losing you.  How could I? I am your Momma.  Protecting you was my job. I failed miserably.  Nonetheless, I am intent on hunting down your killer – and taking it to task. The good news is, I recently acquired a partner in crime. I met her through cancer and this blog. She is a bad ass, and she says the F word even more than I do. (Promise.) Two Mommas are more powerful than one; especially us two. Together, she and I are going to change the world of childhood cancer. You wait and see little boy.

Thank you for being my son. Thank you for coming to me. Thank you for letting me know you are, in fact, still with me wherever I go. You are the best little boy in all the world.

I miss you. I love you.

shot through the heart.

Stay with me, Sweet Boy.

xoox,

Momma

the drugs don’t work…and they didn’t cure cancer either.

Paxton,

Five weeks…that’s all we had left together. Memorial Day, last year, marked five weeks until cancer stole you away from me.

My flashbacks are flaring up again. Is that a possible condition: flashbacks flaring up? Like a case of hemorrhoids, arthritis, Tourette’s? I guess I could look into it. But, I don’t really care what any medical books have to say. These flashbacks are so very clear and so very real, that I have to dig my fingers in between the bones in my arms to bring myself into the present time and space. I need to feel the throbs in my arms to serve as proof that I am “here and now”, not “there and then”. Without the physical pain to ground myself, I float away to some ‘still-frame’ at Children’s Hospital and unwillingly follow the reel through the next five, seventeen, two hundred and twelve frames. I watch you disappear through two narrowing doors, after handing you off to a lady in a white jacket to be carried away to another surgery. I feel the snap of the blue gloves against my wrist as I prep to change your tiny diaper. I hear the humming and beeping of the monitors attached to your little toe. I see the cage-like crib, the fold-out-couch, the egg crates, the heavy curtain, the desk, the plastic non-rocking chair, the tables littered with empty bottles and styrofoam cups…I see the darkness. I hear myself think out the conversions of ounces to mL and squint at the scale, with every diaper change. These details are critical as they serve to accurately report your I/Os at the morning rounds. I look at the clock, I check it again. I reach for the nurses’ button to tell them they are 10 minutes late with your medications that can’t be taken late. I ask question after question, and answer a few hundred in between. I taste the stale air, the metallic suffocation, the charred helplessness. I carefully study every single person who walks through the door of your room. I concentrate on their body language, facial expressions, and word choice. I hear every word they say. But, I pay attention to what they don’t say.

No matter where they start – my flashbacks always end in the same place…where I accidentally left you: on a bed – one thousand times too big – for your tiny, precious body, in the NICU, wrapped in your yellow fleece blanket, wearing your grey and blue “Mamma’s Brave Guy” snap-in-front. I see your plump ruby lips, and your pretty pink cheeks. I watch myself kiss your baby face everywhere there is surface area. I feel your silky hair, and your soft skin for the very last time. As I memorize every last detail from the top of your head to the tips of your toes, I place “Little-Tiny-Bear” under your long, beautiful fingers. I sense your Daddy gently guide me away from you, and put me on the couch where, just moments before, we all sat intertwined as we collectively willed time to stop. I watch your Daddy go back to you one more time…and then another; I hear him whisper in your ear; I watch him snuggle your blanket around you, and tuck it gently under your chin; I see him kiss you over…and over again. I play this scene in my head, but it can’t be real. It wasn’t real then, it certainly could not be real now. The scene starts again, but before I watch it one more time, I heave myself out of bed, press my back against the cold bedroom wall, and dig my fingers into my arms all over again. I do this – “dig into my arms” routine – because it has been the only thing that keeps me from busting out the back door and running to CHW to get you. There are times, Paxton, that these episodes are so vivid I know you are still there – waiting for Momma to come back and get you. In these moments, I am not having a vision, a memory, or even a flashback…rather, a feeling so deep in my soul that I can’t possibly be imagining it. If I could make my way to CHW, I would find you peacefully waiting for me in the NICU. Nurse Renee would tell me you loved your bath, your diaper is fresh and your outfit is changed. She would be sure to have put on your Jordan socks and wrapped you in your potato blankie. She’d tell me not to worry, she loved holding you while I was gone…and, that my timing was impeccable because you were just starting to look for me. Just when I’m about to start for the door, I feel my fingers and thumb almost meet as they lift my biceps off my bones…and reality quickly ensues. No matter how far, how long, how fast I run ~ I will never get to you. You are gone.

The reasons for my ‘flashbacks’, ‘night terrors’, ‘panic attacks’ are plentiful. I’m pretty sure I’ve heard them all: PTSD…trauma…anxiety…depression…psychosis. I think they are all a bunch of b.s. There is no canned diagnosis which could appropriately define my symptoms. No diagnosis exists for the symptomatology of a mother whose only child was brutally murdered by a mother fucker named cancer at the age of 20 weeks and 1 day. Look that up in the DSM-IV.

That being said, over a month ago I decided to stop taking all the crazy ass medications those doctors, who couldn’t save you, prescribed me. I took all those pills because I was a shell of myself, and didn’t know my name – much less what I was supposed to do after my baby died. I was a shell of myself, with a hand tremor and a glazed over look in my eyes; I could barely inhale & exhale, much less realize my pill cocktail was more radio active than Kryptonite. I was a shell of myself who bought into the doctors’ alarm when they said my suicidal ideations put me significantly at risk. No shit I was suicidal. I probably still am. Far as I can tell, I will be for the rest of my life. What type of mother could watch her child die, be forced to carry on in a world without him, and NOT think (a hundred times a day) of a way to be reunited with her beloved baby?

Now that I’m in “recovery”, I see and feel things my salad bar of drugs numbed out. Most of which are not pleasant or uplifting – I should be so lucky. But, I feel them no less. The world is more vibrant and more alive…which is mostly annoying to someone like me living in the land of “My Baby Died”. Nonetheless, I feel things. Albeit these things consist mostly of pain, heartache, and a longing that can’t be fulfilled, I’m no longer numbing out the world. In fact, I am letting the world back in…one day at a time.

I have five weeks, Diddy. This time, it’s my life I am going to try to save. I have to see if I can save my life, because my life is all I have left. For the next five weeks, I am going to fight for me; strangely, a phenomenon I have never before considered. I am going to take every possible measure to get myself in a place where I am strong enough to look July 2nd in the face and give it the finger. In fact, I’m going to do my best to declare July 2nd as, “National F U Cancer Day”. It will never be the day you “…grew angel wings,” or “…went to a better place.” Fuck that ridiculous nonsense. You belong here with me; anybody who says otherwise is a brainless dickbag. My heart may be unequivocally broken, but my spirit is somehow still fierce enough to refuse to go down without one last rally. If I come through on the other side – cancer better start running. Your Momma ain’t never been a punk…but this “no drug” thing is unleashing a whole new level of bad ass. (At least this is what I am telling myself in the spirit of trying to make my five-week plan a success.)

This is absolutely the opposite of what I sat down to tell you about tonight. It’s quite bizarre, actually, that any of this came out. But, deep in my soul it must be what I needed you to know. The other stuff I have brewing in my head, can wait until tomorrow. Apparently, I needed to throw a “Hail Mary” to my Sweet Boy to let you know Momma’s in a whole new fight mode. I know it is selfish, as when we had five weeks left together I wasn’t able to save you. And, here I am with five weeks until “the day I don’t ever want to face again”, and I am asking you to help save me.

I am sorry, baby. I am sorry for all of this. I hope you know, that I will be okay either way. I just want to make you proud to call me your Momma. At least today, I feel like the best way to do that is to be okay and alive, instead of okay and living.

This conversation made me think of one of the most beautifully heartbreaking songs of all time. My favorite version is, of course, by Ben. It’s your lullaby for tonight. It is from your Momma…your #1 fan of all time.

Good-night, love bug. I miss you. I love you. I hope you are safe.

Stay with me, Sweet Boy.

xoox

Momma

the world is insane. i’m just mad.

Paxton,
I am currently donning my pink (PINK!) hoodie…complete with hood up, and tied so tightly that the only thing exposed are my swollen, tired eyes. Only your Momma would be freezing cold on April 21st. I guess I will always be the biggest freeze baby in all the land. I still think you were “coldie” more often than not too – even when others would argue you were fine…I’m pretty sure you had your Momma’s blood. (I apologize for the few times I accidentally made you super-sweaty on those walks when I snuggled you with one too many blankets. I was just making sure.)

I am sitting in your bedroom, in our glider, with your little teal pillow propped underneath the computer. The ‘just right’ pillow positioning is both traumatizing and comforting. I can remember exactly the way you and I needed to be ‘situated’ both here in our glider, as well as on the couch with your boppy – leopard pillow – red pillow combo. Of course, it all makes perfect sense now why it hurt your tiny little body so much anytime Momma made even the slightest move. I can’t talk about it in detail…because doing so would make me puke. All the little signs continue to fall into place. Just when I think I’ve thought of them all, another one pops up: like tonight, as I instinctively resumed the “glider teal pillow arrangement”. I will never forgive myself for allowing anyone to talk me out of my gut instinct. I’d do anything to rewind time and be a stronger-willed Momma. I would force someone to listen to me…not simply hear me. If I needed to, I would scream at the top of my lungs, “No…I am not a neurotic, hyper-sensitive, first time mom. No…I am not going to keep a god damn journal to document on paper what I am telling you right now. No…I am not going to bring him back tomorrow if he doesn’t ‘turn the corner’. What I am going to do is stay right here, holding my son against my chest ,while you figure out what the fuck is wrong.” I am so sorry it took me too long to say all of those things.

On top of being cold, and sad, I have officially decided the world is insane. This weekend sealed the deal, Diddy. The more people I encounter, and the more knowledge I acquire…the more convinced I am that the entire universe…at least my corner of the world…well, minimally my street…is completely twisted.

Go away - except Diddy.

One year ago tomorrow marks my first day back to work after my 13 weeks of bed-rest + 10 weeks of maternity leave…totaling 50 weeks and 1 day of completely unseparated time with you. Dream come true.

I remember how phenomenally scared I was to be away from you for ‘an entire day’. Grammie slept over to make the transition smoother for Momma. But it didn’t work. I did not sleep the night before. I could not make myself leave when it was time to go. Just as I headed for the door, I was compelled to write you a letter. Even though she was anxious to have you to herself, Grammie let me write in silence. Knowing it’d make me even later, I insisted I take the letter up to your room and put it on your dresser. I asked Grammie to read it to you when I was gone, so you would’t go too long without “hearing” from me. And she did…that Grammie of yours is a spoiler. I did not do a single, meaningful thing at work that day. I did not concentrate for two consecutive seconds. I did not make it more than one hour without calling home to check on you. I thought about you every.single.second. Above all, I missed you terribly.

Nothing about tomorrow will be different while I am at work. Everything else will be; starting with the fact that I can no longer rush home, scoop you into my arms, breathe in your sweet smell, and whisper in your ear how very much I love you…and everything else thereafter too.

I miss you so much it hurts my tummy. I hope you are warm enough.

Stay with me, Sweet Boy.

xoox,

Momma

two precious, miracle, blue-eyed boys…together forever.

Sweet Boy,

Tonight I am short on words, but not on tears.

When Bradan’s Daddy contacted me with the news of his baby boy’s passing, I was instantaneously transported back to July. I remember those days with such pristine precision, it seems as if it were yesterday: the suffocating grief, the overwhelming fear, and the pure and unrelenting love…which was all around. At the same time, given how drastically life has changed since you left, July feels like it must have been a million years ago.

Upon Bradan’s arrival, I see you reaching out for his hand. I imagine you holding it tightly and assuring him that he need not be afraid. I believe this because even in the ‘highest layer’, I know you are the bravest litte warrior – with the kindest heart, and most inviting smile.

Both of you precious, miracle, baby boys – with eyes as blue as the sky – belong here with your Mommas and Daddies. I have no doubt every angel would agree that children are meant to outlive their parents. Period. Because we cannot be together, I need you to remember this part of our forever-and-ever-pact: hold onto your angel (the one with the biggest wings) until Momma comes for you. Hold onto Bradan and to the other boys and girls who cross your path too. Most of all, please hold onto my love. And always, always know that you are not alone.

Close your beautiful blue eyes and sleep peacefully tonight, my love; Momma is right here.

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

Stay with me sweet boy.
xoox,
Momma

14 months. numbness. and (involuntary) survival.

Little Diddy,

It has been too long since I’ve written. There is no excuse – other than the fact that this numbness thing has made stringing multiple sentences together an elusive feat. Everyone who knows me could attest that I express the contents of my heart best through the written word. I realize that talking proves to be the most efficient and effective form of communication for most people. Apparently, I am not most people; at least not when I’m expected to express emotions by talking. So much of what I want to say remains unvoiced when I have to rely on my mouth to keep up with my brain. (Momma is a quick thinker. But when matters of the heart are at play, the right words don’t always catch up with my speedy brain…much less find their way out of my mouth. Ironically, in situations that it’d behoove me to be at a loss for words – thoughts fly out of my mouth all too quickly. It’s gotten me into trouble every now and again. Largely because the things that fall out of my mouth, when not speaking with my heart, happen to include the “F” word…usually more than once. And also because most people don’t appreciate the versatility of the word as much as I do.)

In hindsight, writing to you proved to be a helpful way for me to process my grief. I guess it took me until January to begin writing because that’s when my grief-induced numbness started to wear off. Each time I wrote, little pieces of my heart grew closer together. Uniting my scattered, yet most sacred, thoughts into a coherent and heart-felt voice allowed a tiny sliver of my soul to come back to life. Given I had lost my beloved child, to a gruesome and horrific disease – just six months prior, I don’t think my emotional paralysis was uncommon or unacceptable. As it turns out, others thought differently.

Two months ago a deep-freeze-Novocain-shot-to-the-heart-type-numbness returned. This round being induced by a choice, not a disease, feels entirely different…yet strangely familiar. Apparently, numbness is how I spare myself from pain so profound that, if absorbed, it would kill me. I never understood how Aron Ralston, the hiker who got trapped under a boulder for 127 hours in the mountains of Utah, managed to severe off his arm to dislodge himself and save his life. Now it makes perfect sense. Mr. Ralston cut off his arm; I cut off my feelings. Survival: I guess it is an involuntary reflex after all.

I am glad I survived until today, because today you would have turned 14 months. Before I even opened my eyes this morning, I knew it was the 12th. I knew it was 14 months. Instead of letting my eyes give way to the tears which all too often push their way past my lids and down my cheeks, I closed them a little tighter. As I did, I was met with a vision of you so vivid that if I’d reached inside my eyes, I could’ve grabbed onto you. You held onto the railing of your crib as you bounced just high enough to make me nervous…but too excited to make you stop. Across your sweet face spread your trademark, semi-lopsided, contagious smile which was so fierce that it pushed your cheeks against the bottoms of your baby-blue eyes. You had on fuzzy pj’s – – through which your diaper, being extra squishy, made your dupa stick out a little further than the rest of you. The babble you uttered was purposeful in nature – – as you were luring Momma to your room to swoop you into my arms for a good-morning kiss and love-packed squeeze.

I could have watched you all morning. But just as quickly as you came – you were gone. When that happens, especially in a semi-sleep state, I am still not sure if you actually came to visit, or if I simply conjured up a desired reality. Either way, I feel as close to you as I can possibly get – which makes my heart smile.

I eventually willed myself out of bed. I forced myself into the shower. I put one foot in front of the other. I set out to execute the motions of the day. But I held that vision of you so steady in my eyes that I can’t say for sure I ever saw the road as I drove through the dark, rainy morning. I was snapped out of my trance by a message from someone I thought I may never hear from again. The gesture alone was beyond what I could have asked for…especially today…especially in that very moment. I am certain you were behind that too, Sweet Boy. You always find a way to remind me that we are together in this shit storm of life.

For now, Momma has to go to sleep. As always, I will look for you in my dreams. Wherever you are, and wherever you roam, I hope you can feel my love – – from the top of your precious little head all the way down to your tippy-tippy toes.

...the giving tree.

I am so sorry you got sick. I am so sorry I couldn’t protect you. I am so, so sorry for all of this.

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

xoox,

Momma