hallow halloween. and the morning after.

Diddy,

Pictures, pictures, pictures.

Children. Smiling. Happy. Alive. Each wearing a costume somehow cuter than the next. I found myself pausing on some pictures a little, or a lot, longer than others.

The same ones always make my heart stop beating for a second too long. Those of the ‘Shadow Children’ – kids who are nearly the same age you would and should be, if asshole cancer didn’t murder you. There are five ‘Shadow Children’ who regularly appear on my Facebook feed. Once upon a time, I had to keep their parents ‘hidden’ from my feed. Seeing them, particularly because it was always in an unexpected fashion, was far too painful. One by one, I’ve somehow ‘unhidden’ their parents again…except for one. And that’s because, among other all-too-similar circumstances, she was born just three days before you. I purposely go to her Mommy’s page to look at her when I’m feeling really strong – but more often when I’m feeling really, really desperate to know what you’d be doing, how big you’d be, things you may like, etc.  Now a days I find myself staring longingly at the photos of your ‘Shadow Children’. My focus always lingers on their eyes. As I silently beg them to tell me if they see you anywhere. If they know where you went. If they can help me find you. Alas, they cannot.  However, I am relieved to report they are all healthy and happy. They appear especially happy this morning, because they participated in a time-honored Halloween tradition of Trick or Treat over the weekend. The lucky itty-bits are still high on sugar.

Speaking of Trick or Treat, I haven’t been brave enough to stand at our front door to hand out candy and wistfully watch child after child skip away, only to close the door and retreat into our home which sits unnaturally quiet and eerily empty. The last few years I’ve made sure to be out of the house when the mobs of adorable, innocent children come a knockin’. This afternoon, I made plans to have lunch and then head to the mall with Nana. When she pulled into our neighborhood to drop me off, a parade of kids in costumes passed in front of her car. I suddenly realized I had the Trick or Treat times wrong; I arrived home an hour too soon. In a panic, I told Nana there were a few things at Target I needed to get. So she whisked me off to Target, where I ambled up and down the aisles until the coast was clear.

I strongly feel like kid-centered holidays should come with a disclaimer, a reminder, a warning to the non-bereaved. For example, Halloween should be prefaced by any combination of creative PSAs which could air on the radio, tv commercials, shit…through ads on Facebook: “Parents, this Halloween take time to consider that some of those doors on which your adorable (blonde haired, blue-eyed, two and a half year old boy) will knock, house heart-broken people. People who desperately want to be parents, and have cried countless tears over their failed attempts to become someone’s mom or dad. People who are moms and dads, but their child cannot go trick-or-treating, or wear super-hero costumes while posing for super-cute pictures. Because their child is dead.”

Like mine.

The morning after a ‘holiday’, particularly the ones which are largely child-oriented, is almost harder than the actual day itself. Because our world is connected by social media. Social media – at which like a car wreck, I can’t help but looking. Post after post reminds me that I’ll never know what you would’ve wanted to dress up as this year. And I’ll forever wonder, at just two and a half, how many houses you’d have walked to, and how many you’d have opted for a ride in the wagon to make it a little further…before ultimately becoming too tuckered out to last any longer. I’ll never know if you would’ve proudly proclaimed some adorably mixed-up version of, “Trick or Treat!”, or if you’d have gotten an unexpected case of stage-freight, and froze – with your pumpkin clasped in your outstretched hand, hopeful to get a mini Snickers bar anyway.

I’m willing to bet I wasn’t the only Momma left wondering this morning. I know of far too many Moms who wonder what it would’ve been like to have had the privilege to walk their own little girl or boy through the neighborhood, and hear how cute they look in their costumes. I imagine they scrolled through their Facebook feeds today, and with tear-blurred vision stared into the eyes of the ‘Shadow Children’, as they mourned their child whose picture they should be uploading.

Parents who don’t belong to the worst-club-ever don’t know the thousands of tortures, just like this, which exist in our (new) worlds. Only a bereaved parent knows of the sucker punch which waits around every corner. No matter how cautiously you turn the bend, no matter how meticulously you scan the surroundings – there is no preparing for the blow. Although there isn’t a day that goes by that we need ‘reminding’ of what we’ve lost – some days all it takes to surmise the magnitude of what we’ve lost…is a picture.

Many people think that grief is some sort of “process”, which has an end. Trust me when I tell you, it doesn’t. Because every single day, for the rest of my life – there will be a morning after…filled only with shadows of you.

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Brush your teeth and hop into bed.

Stay with me Sweet Boy,

xoox,

Momma

P.S. You’ll always be my little Boo!  (Sorry. Momma couldn’t help herself. Look at that. Even when I’m sad, I’m still funny.)

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

Paxton Bowe,

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

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

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

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

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

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

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

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

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

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

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

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Stay with me, Sweet Boy.

xoox,

Momma

Your spark has spread across the pond…to the wild, wild west, and everywhere else too. But I’d rather you were asleep in your crib.

Diddy,

My little Diddy Bop…how I miss you so. More oft than not, I don’t quite know how to begin my letters to you. Perhaps the only normal part of my existence is the abnormal feeling I get when I realize the only way I can communicate with my son, who was killed over a year ago, is through letters he may or may never read. Good thing for you (because as my child, you have obviously found a way to read these) I’ve never been one to conform and do what others perceive to be normal.

Once I begin writing to you, I feel more normal and most certainly more at peace than I have in days. At the close of each letter, I tell myself, “…just write him one note every day….no matter the reason…no matter how profound or inconsequential the message”. But, most days I am still not brave enough to creak open the lid of “Paxton’s Box” and allow myself to participate in the single most vulnerable act: expressing my feelings through the written word. When it comes to writing to you, there are more days than not when it is simply too difficult to navigate the vastness of my grief, especially in total solitude (except for the companionship of my laptop and Sir Giraffey).

Each week I receive notes, cards, emails, Facebook messages and letters from complete strangers, long-time friends, long-lost friends, and your dearest earth angels who prefer to remain anonymous. Each correspondence serves as a tangible reminder that people, both near and far, are thinking of you, loving you and…holding you close to their beautiful hearts. The notion that I am not the only person in the universe missing you at any (and every) passing moment, often is the very thing which allots me the will to survive another day without you. While I do my very best to at least acknowledge I have received them, I simply do not always have the strength to do so. Ironically, it is typically the messages which mean the most that replying to proves most challenging. (I know it’s ass backwards; it’s just the way my world works.)

This past week, I received two messages which affected me very deeply.The timing could not have proven more critical. Today, with their borrowed strength, I will tell you about the messages and the women who sent them.

The first came from a woman all the way across the pond – in London. She learned of your story through Facebook. By her own admission, she avoided reading any of my Warrior Momma entries when she stumbled upon them via friends’ of friends’ shared posts. She said while she initially told herself it was merely an unconscious choice, she now realizes it was more likely out of fear. She called herself one of the stupid – naïve, uneducated, blind. The other morning, Jessi confronted her fear. She clicked on one of the entries. And as she says, her world was permanently altered. Jessi ultimately blew off an entire day of work to read every entry. She relays that she read every single word, and listened to every single song. Then Jessi wrote me. Among many other things, she said, “…so I’m writing to say ‘thank you’ for introducing me to your Paxton and to tell you that your mission is working because for every person, like me, who moves from the unseeing column to the light there is one more person to help fight the fight. Like so very many people around the world, I am thinking about you and Paxton. I am joining your fight.”

Serendipitously, Jessi is running a Survival of the Fittest event in London in November for an England-based charity called CLIC Sargent. The race benefits children with cancer and their families. Admittedly, the race meant less to her yesterday than it does today and it will mean more tomorrow as she continues to think about more ways to fight. For every pound donated to her race, Jessi will personally donate an American dollar to the Paxton Andrews Foundation. Very best of all, Jessi asked if she could run this race in honor of you! Of course, I said “YES!”

The next message came from a woman, named Bree. She lives a little closer to home – only 2,000 miles away in Arizona. Bree sent me a link to a song, named “How?” by Regina Spektor. She explained that while she never had the good pleasure to meet you, and hasn’t seen or spoken to me in over twenty years, she thinks of us daily – most especially when she hears this song. She also said her life has been changed by your story…and she promised to carry you in her kind heart for the rest of time. I promised Bree I’d put the song on your special playlist; the one I play for you on days, like today, when it’s exceptionally difficult to be so far away from you.

Bree has a baby boy of her own. He was born about a year after you. He is perfect. He is adorable. He is happy. He does not have cancer. Although she’s not said as much, I get the distinct sense Bree’s appreciation of her beloved son has been enhanced through your brave fight…through your beautiful soul. l just have a gut feeling about this. But, you know how I feel about trusting my instincts.

Paxton, I am so grateful that you continue to find ways to send me signs and messages of love and strength. I am extremely proud of the way you use your life spark to change peoples’ lives in ways so profound they cannot even explain…and evermore proud that you you allow your soul to shine so vibrantly, that even complete strangers can’t help but to fall in love with you…even when they are afraid to. But, never mistake the fact that I would trade the awe and wonder of of these intangible forces to have you back in my arms where you belong. I would far rather the only people who knew your name lived in the confines of my (now empty and sad) home. Simply put, I want you back.

Here is your lullaby tonight, sweet boy. I promise I will never forget one memory. Let’s close our eyes and find each other in our dreams.

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

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

No~Thank You, May.

Paxton,

May is here. I cannot do May.

I said those words tonight. I said them over and over. I am sorry if you heard them…if you heard my voice grow weaker with each, “No, no, no,”. I am sorry if you saw the pain in my eyes, the hot tears that ran down my cheeks. When my “no’s” fell silent, I blindly stared out your bedroom window. My sweaty palms slipped off your changing table, and wrung themselves tightly together. In my head, I begged no one in particular, “Please make May go away. Please bring him back. Please. I cannot do May”.

May is when you stopped eating. May is when you couldn’t sleep some days. May is when you couldn’t stay awake other days. May is when you were admitted into the ER. May is when you became a patient on the H.O.T Unit. May is when Room 582 became home. May is when you were assigned the largest team of doctors in the history of pediatric Oncology patients at CHW. May is when you had three (out of five) surgeries. May is when you were diagnosed with Neuroblastoma…then with Leukemia….finally with Sarcoma. May is when you started chemo…on Mother’s Day. May is when you had, and ultimately ended, your 10-day “smile-drought”. May is when the end began.

For the next seven days, I will recount every hour we spent together before we crossed the one-way bridge into the barbaric world of Childhood Cancer. I will recall the endless trips to Target to buy ‘another’ new bottle, three different nipples, Vick’s Vapor Rub plug-ins, a medicine dropper, and Pedialyte. I will read, and re-read the Gold Binder of “Paxton’s Day” logs in which I insisted Nana, Papa and Kim Lueder record detailed notes of your eating and sleeping patterns. I will think about the night I gave you a bath – and suddenly realized that the water may be a little too warm; I will then feel my heart sink as I picture you simply staring back at me with a look of quiet exasperation. I will remember watching my miracle boy in his peaceful slumber for “…just one more minute” – before waking you on Thursday morning. I will see the vision of you intently watching Nemo on the computer at the gym through weary and tired eyes. I will remember you and I fumbling our way to Urgent Care Sunday afternoon, as I did all I could to appease you as we waited for over an hour, only to have some inattentive, arrogant doctor tell me you had “Hand Foot Mouth Disease”. I will remember you waking up every few hours throughout the night on Friday, Saturday, & Sunday….not to eat…just to be held. I will swear at myself over and over as I wonder how I didn’t figure out how very sick you were. I will ask myself a hundred more times how I possibly missed all the signs. I will regret not staying awake all day…and all night…not giving up one moment with you. I will call in every favor I have to just in case this can still be one huge misunderstanding. I will give everything I own to be stirred awake tomorrow morning by the sound of your “Whoo.Who.”

Achhhk. May. Spit.

But tonight it is still April. I will hold onto April until the sun steals it from me. I will thank April for giving me a myriad of “Non-Childhood Cancer” memories. We did so many special things in April; we embarked on so many secret adventures: just me and my American Express Baby. “…I’ll never leave home without you!” Do you remember when I said that to you as I strapped you into your car seat to set out on yet another one of our outings? You pulled your smile back so big; your eyes filled with laughter and your arms circled with excitment.  You’re reaction made Momma let out a shot-gun laugh and drop her head onto your little tummy. That is such a great memory. I replay it in my head more often than you know.

Yes, it’s true. Momma has a fierce storm brewing inside her bones. May started it. But hasn’t let up since. When the storm will rise to the surface of my skin is no one’s guess – and everyone’s fear. All I know is it will not be tonight. Tonight I am going to close my eyes and play back all the bliss of April. As I do, I will imagine you sleeping in your bassinet – right by my side, breathing the same air, feeling the same breeze, hearing the same sounds, sharing the most sacred times, stealing the same love…which saturated our home.

As Dave would say, tonight I will “sleep to dream (you).” If we do not find each other in Momma’s dreams tonight, you need not be afraid: “space between” us does not exist. I am always holding your hand, and forever carrying your heart.

Trust me, My-My. You and me…we are gonna be okay. Momma’s got this.Trust.

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

February 12th.

My Sweetest Paxton Bowe,

One year ago today, you were born. It is a known fact that you completed our family. Everyone feels that way. Ask them; I promise they’ll agree. You are the link that was missing from our entire family for far too many years. You are, most certainly, what was missing from Momma’s life. My entire life, I have felt a little lost, a little incomplete. I would never have been able to put my finger on the feeling – that is, until I held you in my arms. To sweeten the pot, you turned out to be the VERY best version of me that I could never have dreamt to be, and the very best version of Daddy that he could ever have hoped to be.

I can remember every single detail about February 12th, 2012, so vividly, that the harsh reality that I can’t rewind time, and have it back remains impossible to accept. I watched the clock all day long today, starting when Daddy inadvertently woke me from of a non-sleep. He rolled over, wrapped his strong arms around me, and let out a soft whimper. I’m sure he was as dreaming of you again. He cries in his sleep too often since you have been gone. And, he can only fall asleep if he holds onto a pillow like a life saver in rough waters. As long as I have known him, he’s never done either of those things. I decided to open my eyes to see how many hours I’d been lying in bed; the clock read 2:12. (Promise.) I had my first contraction at 3:06 a.m., so I patiently watched for the numbers to read 3:06. I then watched for them to read 4:15, which was when I finally went to stir Daddy who had fallen asleep on the couch. Next, I waited for 6:55 a.m., which was the precise time we checked into the hospital – Room 4. I reeled through the snapshots in my memory and saw the arrival of Nana, Grammie, and Lala. I heard the rattle of the hospital bed as my ‘shakes’ became worse and worse. I could almost taste the the ice chips Daddy placed in my mouth, hear the songs which played softly in the background, and feel Daddy’s warm hand rub my forehead or my back…depending on what I needed in that very moment. I waited for the clock to turn 3:43 – the time I began to push. Daddy recounted all the crazy-daisy things Lala told me to do, and how they worked like a charm. He reminded me how the leg he was holding was cranked almost past my ear, while Lala held my other leg just above my tummy. (He was a fish outta water, Diddy. It would’ve been funny; had it been funny. But, it wasn’t…it was just sweetly annoying.) And, of course Daddy and I both watched for the clock to read 4:21 – the exact time you were born. I wondered if either of us would exhale as the clock changed to 4:22.

In between watching the clock, Daddy and I read all of the beautiful, heart-felt, creative notes and wishes that most all of your guests brought to your 1st birthday non-party on Saturday. I asked everyone to bring a note or letter recounting their favorite memory with you, or a wish for you in the year ahead. It was one of the best ideas I’ve ever had – even Daddy said so; and he doesn’t hand out false accolades. We also received an array of cards, letters, and gifts from many earth angels throughout the week – which we saved for today to read to you. Reading through the stack of cards, letters, and notes brought back some very, very loving memories. I hadn’t forgotten one of them, but it had been awhile since I called some of them into my active memory. It also gave us a deeper appreciation of the profound impact you have on so many peoples’ lives. And although we already knew as much, the myriad of letters served as tangible proof that you are, in fact, a miracle.

Long before you were placed in my arms, you and I had a symbiotic existence. It is so unbelievably strange to not have you here with me. I literally feel as though someone cut out half of my soul. In essence, that is what happened when I lost you. I have come to realize this feeling will never go away. The more time which passes, the more I miss you. Nobody tells you that part about being childless mother. Time does not make anything easier; in fact, it makes things harder because I keep getting further and further away from the last time I was able to kiss you, hold you, watch you, hear you, smell you. The pain of missing you grows stronger everyday, Paxton. I wonder if you miss me just as much? I wonder if you can see me? I wonder if you can hear the things I tell you? I wonder if you can feel the unceasing love I hold for you? I wonder if you ache to be held in my arms? Sometimes, I imagine you above me, trying to reach down to me with your long, beautiful fingers, and tiny perfect hands, but you can never quite get to me. The thought of this makes me sad. So very sad.

One year ago today, you were born. Without a word, and without warning, you proved to me that dreams really do come true. I will love you forever and ever…and then a little bit longer. I will always be so very proud of you, and infinitely remain your biggest fan. As I told you within moments of your arrival, and many times there after, “I am so glad you are you.” That will forever and always remain my truth. The reasons my love for you is so deep and so profound are limitless, sweet boy. However, the greatest reason of all is, simply put, because – you are you.

Family Completed

On your first birthday, my wish for you is this: May you be happy always.

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

Stay with me, sweet boy.

xoox,

Momma

Silence, Tears & Rainbows

Paxton,

Today has been a hard day. In fact, the past several days have been extra difficult. This seems to happen around and after the 2nd of every month. The time you were here went far, far too quickly. Now the days drag on so slowly…and are filled with so much down time. Daddy was at work all morning. As usual, Lucas was mad at me for being there instead of his beloved Daddy. The house was quiet. I don’t like when our house is quiet. It is eerie. It is scary. It is lonely. When it is too quiet, I find myself straining to hear your voice: coos, laughs, cries…anything. But, I don’t hear you; even when I hold my breath to be extra quiet. As I catch myself doing this, I remember, you are gone. That cruel reality check always makes me want to scream…break things…fall on the ground and thrash around. I have had to talk myself out of giving into those urges countless times. I fear that if you are watching me – which I so desperately hope you are – you would feel badly. I don’t fear, however, that you would think I was weak. I am weak. I am tired. I am sad. I am scared. All the time. Everyone continually tells me that I am “…doing so good“. First, I want to lean over and punch them as hard as I can. Obviously they don’t see my insides – my empty heart and my broken soul. They don’t drive in the car with me and see me cry every single time I am alone in it. I look in the rear view mirror 100 times a week – only to see your empty carseat base, fun mirror, and your blue & yellow riding hat from Grammie. Clearly they don’t see me and Daddy sit in silence, on opposite sides of the couch, every night, as we stare at the t.v., which is on, but not being watched. Neither one of us dare asking what the other is thinking…because the answer is obvious. And they certainly must not see me walk into your room each night before bed, first thing in the morning after willing myself out of bed – – or the countless times in between – – just to fall over your changing table and scream into your pillow. I haven’t yet gone into your room without crying. I miss you so much, little boy. But, despite the pain of your absence, I find comfort there. As I spend time in your room, I don’t have to close my eyes to picture you perfectly everywhere I look. I reach out for you, I hold your invisible fingers, and often sit in the glider to rock your ‘spirit body’. And, then I want to say, “By the way, you can’t do good.; you can do well. Fuckwad.” But, I do nothing – I say nothing, because as I said, I am too weak.

To drown out the silence, I started to overhaul the house. I didn’t stop for four hours straight. It was bittersweet; like everything we do or don’t do these days. It felt so good to purge, organize, de-clutter. We have so much useless stuff in this house. It is amazing how it all got here, or what I was thinking when I bought it in the first place. But, I was thinking the entire time, “I shouldn’t be able to do this. It’s a Saturday morning. I should be cleaning up Paxton’s highchair tray, and little plastic dishes, and teeny tiny spoons from a messy breakfast. I should be doing loads and loads of laundry chocked full of little boy clothes. I should be taking you to Nana’s, Lala’s, Grammie’s – – whoever was complaining the loudest that they wanted to spend time with you today. And, I should have plotted just the seamless timeline in which this would all coincide with your afternoon nap, so you’d be all ready for playtime with Daddy when he got home from work.

I found something in the attic that made my heart stop. I have spoken of it to several people, many times since you showed me the first of many double-rainbows this summer. I didn’t know, however, I still had it. In the dusty bin I almost didn’t open, there it was. I believe Lala or I got it from a pre-school teacher? Nonetheless, it was one of our favorite things when we were little. (Despite the fact that it androgynous in nature – a pin, a picture, a coaster – and that it’s worth less than five cents.)
IMG_0961

I brought it straight down to your room and put it on your dresser. I hope you like it, Little Diddy.

You are with me every second of every day. Not a moment goes by that you are not on my mind and in my heart. I will never stop loving you. I will always be your Momma: you will always be my baby. Did you see me today?

Stay with me, sweet boy.

xoox

Momma