june gloom. and i really can’t stop throwing up.

Paxton,

Momma has been feeling like a giant pile o’ poo lately. It’s the type of ‘don’t feel good’ where I sincerely struggle to get out of bed every morning. When I finally force my feet to the ground, and my legs to take consecutive steps in front of the other – I go into auto pilot until I make it into work. Once I arrive, I have to fight to stay upright and continually wonder if “today will be the day” I finally collapse on the ground and give up. Ambling through every day like this is just another part of my new ‘normal’. A ‘normal’ that only a bereaved parent could possibly understand. Anyone who can’t relate to my ‘normal’ – should occupy their spare time thanking the sun, the moon, and the stars for being the lucky ones.  Not understanding my ‘normal’ means they haven’t had their child die in their arms.

I guess I took a giant step back in my grief, because my body feels as empty, yet mysteriously heavy, as it did in the initial weeks following your death. I thought I had finally made it past the darkest of dark places; but I should know by now that this grief will continue to comes in waves for the rest of my life. When I least expect it, the riptides of grief come crashing to around me and attempt to pull me under. With each return, the undertow becomes harder and harder to fight. Somewhere along the way, someone very near and dear to me shared his painfully keen insight on grief. He said, “Believe me, sweetheart, the grief will never go away. It’ll come in waves for the rest of time. It has to come in waves; if it came all at once, no human could ever survive its toll.” He couldn’t have been more accurate. It will come as no surprise when I tell you he is a bereaved father. Only a parent who has lost a child could know of such unrelenting and unceasing pain.

Maybe I am feeling extra sad because another school year has come and gone. And, now I’m facing what I know will be another long and lonely summer without you. I can’t help but imagine all the things you and I would do together to fill our endless summer days. Momma and Diddy: a Dynamic Duo.  This summer, in particular, would be especially fun-filled. Two and a half – a perfect age for all types of perfect mischief. How in the world will I survive another summer without you? Why can’t we be together running wild and free? How did cancer ever end up inside your tiny body? Why didn’t I take you into the doctor sooner? How didn’t the treatment work? Where are you now? When is somebody going to end this sick fucking joke and bring you back?

I still think that, Diddy. Even after all this time, I have moments when I actually think someone is going to show up at my door and hand you back to me. I want to scream sitting here on my couch, staring at my favorite picture of you – so alive, so animated, so happy. Even your eyes are smiling at me. As I look into your blue eyes, for a split second, I wonder if you were even real. The life I knew with you seems so long ago. Another lifetime ago. In the deepest parts of my soul, I know it was another lifetime. I know that lifetime is gone. But, I still try to cling to the moments I had with you. As time goes on it gets harder to remember. My old memories are being replaced by new memories: as if they are in competition with one another. I promise you this: neither are going to win this fight.

I want my old memories, especially the good memories with you, more than anything in this world. The good memories are so hard to recall. Sometimes remembering them is just as painful as remembering the bad, cancer memories. I wish I could say I have found just a little peace with all of this, but I have not. I wonder how parents who’ve watched their child die, find peace. Do they ever truly find it, or just fragments of it here and there? Feeling at peace about you dying is never going to be reality for me; and that’s fine. At least I’m being honest with myself and what life feels like to continue in this life without you – which is still hell on earth every.fucking.day.

I think I am going to throw up now.

Thank you for being my eternal sunshine.

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Stay with me, Sweet Boy.

xoox,

Momma

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hiraeth. you are my forever home.

Diddy,

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

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

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

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

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

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

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

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

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

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

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

Stay with me, Sweet Boy.

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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

Call my understudy – this role sucks.

Paxton,

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

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

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

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

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

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

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Stay with me, sweet boy.

xoox

Momma