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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i don’t worry about not being normal. i only worry about you. (and maybe zombies. only sometimes.)

Lil Diddy Bop,

When I woke up this morning, it took me a few blinks to remember I was in Florida. I came here with two of my loveliest lovelies on a hunt for sunshine. It is the second time I’ve been to Florida and the upteenth time I’ve set out on a big o’ jet airliner and fled for unfamiliar land since you’ve been gone. No matter where I roam, the pain of missing you follows.

No matter how far, how often, or how abruptly I flee from home it is impossible to ‘run from grief’. To salt the wound, there also isn’t anything that feels right about being able to jump on a plane at any given time, and fly off to any given destination. I am supposed to be at home, with my two year old son – pinching his cheeks, and my pennies to save up for his first trip to Disney World. Instead, I’m laying in a strange bed, alone, in Boca Raton. Putting me about 185 miles from Disney, and 180 degrees from the life I should be living.

It’s impossible not to think about how wonderfully different life would be if cancer didn’t steal you. Glimmers of that life play through my psyche regularly – whether I stay at work later than normal, run multiple errands (in order to avoid going to an empty home), once I arrive at my barren, quiet, perfectly tidy home, on the weekends…and every minute in between. When I embark on an excursion outside of my day-to-day routine, I am stuffed with extra heaps of guilt, sadness, rage – and a hefty side-serving of confusion. How did this all happen?

My super-kind-extra-special lovelies are keenly aware of the angst such situations cause my heart. They couldn’t have been more supportive in their reassurances that everything would be alright. Even though I’ve heard that before and everything turned out the exact opposite of alright – I couldn’t help but trust them implicitly.  This is just one of the many reasons I love them.

Yesterday, as I was drying my hair, the all-too-familiar feeling of my heart lurching up into my throat started. Anxiety. It is as normal now as grief. And as breathing. I was certain something had happened to your “specials” in transit to Nana’s. I should’ve left them at home: in the fire-proof safe, locked in the fire-proof cubby, in the depths of the now fire-proof, bullet-proof, zombie-proof basement. But the fear of zombies conquering Milwaukee in my absence trumped my fear of the risk of having Nana take your ‘specials’ to her house for safe-keeping. Dammit. I chose wrong again. The other shoe had dropped. It all made sense. It also explained why no one was calling me. They didn’t want to ‘interrupt my vacation’ with more bad news.

My mouth filled with pre-puke saliva as I frantically lunged towards my phone. With a shaky hand, I pressed the button to call Nana. She didn’t answer. I shook out a text. No reply. I called Lala. No answer again. I sent her a text too. Again, nothing. I called Nana back. Oh my GOD… the fire – the car accident – the ER -the next death – the next memorial – the next obituary to write…the zombies.  And, just like that – the loosely stacked ruins of my AC world, collapsed like a house of cards caught in the vortex of a tornado.

I know there are people who find my thoughts neurotic, paranoid, or psychotic. Rest assured, those people don’t know what I know. I know all too well that there are absolutely no guarantees about anything in this life. I know that babies die for no explainable reason, from unthinkable accidents, from horrific acts, and from the biggest asshole murdered of all time: cancer. I know that evil exists. I know that some people are born without a soul. I know about things I never knew about knowing.

I live in a perpetual state of waiting for the other shoe to drop. I am constantly on edge, on guard, on call for something else to happen…again. Any time, anywhere. I am always expecting to trip over another dividing line. Another before and after.

Then, my phone rang. Nana. My mouth ran dry. Before she completed the first sentence: I exhaled. Everything was fine. I can always tell by her voice what she’s feeling even without her saying the precise words. Your special things were safe. Nothing was lost, tattered, ruined, burned or stolen. There was no accident, nor was there a trip to the ER. No one died. There was no memorial to plan. My house did not burn to the ground. As an added bonus: the zombies did not attack – yet.

I realize that my thoughts, fears, worries and obsessions are not remotely similar to those of mothers who are lucky enough to not have a dead child. I wonder if anyone realizes they shouldn’t be? Trust me, I’d trade my non-normal existence for their normal existence any day of the week. But my normal disappeared on May 8th, 2012…and was obliterated on July 2, 2012. All traces were expunged from my existence in February 2013. Anyone who feels the need to cast judgement, make assumptions, or spew conjecture about the thoughts which run through my mind on a perpetual loop should do the universe a giant favor – and fuck the fuck off.

I feel better knowing your “specials” are safe. I feel better because I’m writing to you. I feel better because I just said fuck a bunch of times too. Thank you for sending these lovely ladies into my universe…and for holding their hearts hostage. Half the time I am convinced the only reason they put up with me is because they are so deeply in love with you.

I wish you were here. Or, thatI I was there. I wish we were together – anywhere.

The sunshine always makes me think of you.

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Stay with me, Sweet Boy.

xoox,

Momma

P.S. Today is your Uncle Stephen’s birthday. Sneak a butterfly kiss onto his cheek at the point in the day when you feel he needs it most.

 

 

 

Trick or Grief. Halloween was worse than I remember last year.

Little Diddy,

I’m not sure how I got to be 40 years old without realizing Halloween is one of the most child-centered holidays recognized in our society. This is the second Halloween without you…but, I simply don’t recall last year being this difficult. Maybe it’s because last year I was in a deep freeze? Maybe it’s because Iast year I instinctively knew as an 8 month-old, I’d have taken a few obligatory pictures of you in your costume – possibly next to your pumpkin – before I quickly took you out of the over-stuffed charade just in time to avoid an epic melt-down.

As a 20 month-old little guy, I have a feeling you would’ve been far more fascinated in the hoopla of Halloween, or at least the candy aspect that comes a long with it. (What can I say? You got your Momma’s tastebuds!) By now, you’d have identified favorite cartoons, favorite books, favorite characters in your favorite T.V. shows. It’s safe to say you’d have only just begun to express the very fabric of which you are weaved. You’d also have been able to say, “Tweeeeeeat! Peease?” Oh, Diddy, Diddy, what would you have been for Halloween? Besides anything you wanted.

Today I played the game I’m so good at playing. The one where I teleport myself into a parallel universe. In this universe we are together, we are happy, and best of all you are healthy. I find myself excited that our “Fall Fun Day” has arrived. I see myself constantly glancing at the clock, as I can predict almost the exact minute you will begin to stir from your afternoon nap. Once you are changed and fed, I grab the 3 or 4 bags of things you need, may need, and probably won’t need – but I neurotically tote along anyway. (I’m a professional at packing these bags; so we need not discuss how much easier it’d be to leave home without them. Momma just does it anyway.)

I can almost feel myself carrying you to the car and gently placing your bundled dupa safely into your cow-print car seat….which has now faced forward for so many months I have to strain to recall how long it’s been since you faced backwards. My thoughts are periodically interrupted by your squeaky voice excitedly calling out “Twwuck!” Tweee!” and “Pupkk-kin!”. When we arrive at Elegant Farmer, I hoist you out of the car and set you on your feet. Your tiny hand reaches up, and instinctively entrusts a guide in my own as we traverse the man-made corn maze. As the breeze briskly meet our cheeks, I reach down to make sure your hat is all the way over your ears. Moments later, I wipe your runny nose with the back of my mitten. You are blissfully unfazed by the elements; but, I can’t help myself from worrying anyway. I hear the echoes reverberating off the tops of pumpkins as you excitedly stake claim on the one you want to take home. No matter how big, how small, how lopsided or flat-topped, it is absolutely perfect.

After our adventure through the maze – I contemplate a hay-ride. But, not this year. I realize I’ve saved only enough time before ‘breaking point’ to sneak you inside for a caramel apple. I ask the girl to slice the apple in extra tiny pieces…then bite them into even smaller bits just to be sure you can chew them. I don’t ration the caramel. Momma gives you free reign on the good stuff on special occasions. With sticky hands and caramel-stained cheeks, we drive straight to Grammie’s for extra-special loving. Momma passes out from exhaustion on the couch while Grammie steals good loving from you. But first we discuss all things perfect about Paxton…including how much you are talking, how much you seemingly grew just since last week, how you look this cousin or act like that cousin – but agree you are unique in every way. Mostly, we marvel over how irresistibly adorable you are.

Do you know we went to Elegant Farmer once? You were tucked safely away in Momma’s tummy at the time. It was just weeks before being placed on bedrest that we spent a sunny afternoon in October enjoying what was slated to become one of our little family’s Fall traditions. In fact, it is one of the last outings we had before being sequestered in a hospital room, and then in our bed at home for the next 13 1/2 weeks. It’s painfully ironic that in anticipation of the future, which I was certain held so much promise, I envisioned many of the same things that day as well. The main difference being back then my heart was full of hope, my soul full of happiness. I remember laughing at everything and smiling at nothing. I also remember peeing two times in a glorified-outhouse. I was so punch-drunk in love with life, I would’ve been content peeing right in the middle of the corn maze.

I did not go to Elegant Farmer today. Instead I drove through our neighborhood to the big, yellow house on the corner that sits dark & empty. On the other side of my wind shield, I noticed the houses which line our street had seemingly transformed into grave yards overnight. Front yards more closely resembled something from ‘American Horror Story’ than suburban dwellings. Lawns lay blanketed with headstones, skeletons hang from garage doors, and cotton-stretched spider webs float in the breeze. Suddenly the ghosts and goblins, intended to symbolize a childhood wonderland, morphed into a literal haunting…of a childhood lost. I nearly suffocated at the realization that grave yards, headstones and skeletons more accurately reflected my reality of living in the “Land of My Child Died”, than that of a child-centered celebration. A shriek snapped me out of my trance, and also forced me to inhale. It took a few moments to register that it was the sound of my own cry.

I know it’s make-believe stuff. I know my reaction is not normal – even for a grieving Momma. I know this is one of those moments I should never, ever tell anyone about. But I am tired of keeping so many secrets bottled inside. I am tired of feeling like no one else in the universe knows what I experience in the course of a day. I am tired of being a sitting duck every damn time I venture into the world. I am just tired. I know there are a few people who say I am wallowing in my grief, and that I am choosing to remain in a ‘dark place’. (As if anyone would choose one single aspect of my life.) In fact, the grief of losing you is simply a part of my life now. It is not my entire life; but it is a part that cannot be abandoned. So really, what I am choosing to do – is courageously face my truth. Perhaps those people should stop wallowing in judgements and assumptions. Instead they could try to one thing in their lifetime that remotely reflects truth. Or, they could just fuck off.

You could have been whatever you wanted to be on Halloween – and every other day too. I promise I would have done everything in my power to support you in realizing your smallest of hopes and your wildest of dreams. You were bound for greatness, Paxton. I am so very sorry you got sick.

Trick or Tweeeeat, Sweet Boy. I’ll save all the red Gummy Bears for you.

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xoox,

Momma

you can’t stop her. you can only hope to contain her.

Diddy,

You stole your Auntie Kupa’s heart long before you two ever met. I recall precisely the day I realized “it was written”.  In November I was admitted to the hospital and placed on medical bedrest to prevent very premature labor. All eyes were on you. But, Kupa wan’t satisfied. She needed to see for herself that her Baby Blue was in good hands. (We didn’t officially know you were “boy” anything. But, your crazy Kupa insisted she did.) Fielding phone calls was challenging. Providing anyone with an update of any type was impossible; our condition changed like the impending winter wind. So, Kupa did what she does best: took matters into her own hands. She set out on an impromptu trek across the state. The roads were icy, the sky dark, the air bitter. Kupa cared not. She was on a mission. Donning her trademark combat boots, head band, and black leather jacket – Kupa made her grand entrance at WAWM Hospital. With a flash of her smile and a wink of her eye, she managed to sweet talk her way past the Nurse station, right into my “No-Visitors Allowed” corner-suite room. That part isn’t surprising in the least. If there are rules (or laws) to be broken, Kupa is there to do so. Usually with a sly tilt of her head and a mannerly, “Thank you very much, mother fucker.” But that’s besides the point.

Prior to coming to the hospital, Kupa made a quick pit stop to pick up some (unnecessary) gifts for you. Among the lot of items: an array of outfits. In the event you came early, she wanted to be sure you had “…fly shit to wear”. My favorite of the bunch was one you ultimately wore so very often: a green and white stripped, fuzzy, snap up pajamas with froggie eyes where your toes went, and a froggie face atop of your tiny dupa. Following in a close second: a black onesie with a plaid patterned skull on it – complete with matching socks and two different bibs…each with a variant skull and bones.

I didn’t get to spend time with Kupa that day. Moments after her unexpected arrival, Momma was whisked off to a room, which resembled NASA headquarters, for observations. A very long ultra sound, as well as a slew of other tests – all which involved pokes, prods, gels, head lamps, and heat lamps ensued. After an eternity of conferring, questioning, and talking in coded doctor lingo, each member of our ‘High Risk Maternal Fetal Pregnancy’ team concurred “…that is one happy, healthy baby…who is perfect in every way. Our biggest hurdle will be keeping mom pregnant.” (The time the entire world was most concerned about your viability was precisely when you were the safest you’d ever be. The irony of it all now makes me vomit.) Alas, hearing the words “…happy and healthy baby” caused me to spontaneously burst into tears of sheer relief. I knew in my heart there was simply no way I would deliver you early. I refused to let my body fail you.

Before leaving the NASA-like procedure room, I was hooked back up to bells, whistles, buzzers and a computer monitor which tracked your every move. My tummy was lubed and strapped tightly with two heart monitors: one for me, one for you. I’m pretty sure they hooked us up directly to the red-line at the Oval Office too. When we were ready to roll, a small brigade of dear nurses wheeled us back to my room. Lying in the middle of my bed, propped on my pillows, was the most frightening zombie, voodoo, gangsta doll-esque creature I’ve ever seen. The sight of this ghastly thing caused Momma to burst out in shot-gun laughter: a hearty, deep-from-the-soul laughter – which should’ve thrown me directly into labor. Your Kupa is one sick, twisted chic. A sick, twisted chic who has a heart gold once she decides she loves someone. Although we quickly agreed your “Kupa Dolly” was the most beautifully misunderstood doll-esque critter in the world, we tucked it safely away in your closet…just for good measure. Your Daddy said you could have it when you were two. I said when you were 19.

Your Kupa checked on you a few times a week for the next 13 long, nerve-wrecking weeks we remained on strict bed-rest. Naturally, she came to see you many times after you were born…both before you were sick and a host of times thereafter; whether we were in the H.O.T. unit or at home for what always proved to be far too short of a stay. In hindsight, it is so very clear. From the very beginning, nothing could keep Kupa away from her beloved Baby Blue: an unfriendly work schedule, hectic wedding planning, four dogs and a home to tend to, sparse money, temperate weather, a beautiful fiancé, long distance treks, least of all – mother fucking cancer. Paxton, your Auntie Kupa would have given her life to spare yours…her heart to spare your Momma’s. I hope you know by now, you are one of the most cherished loves of her life. Kupa would do anything, anything in this world to protect you, your name, your honor, your spirit.  Simply put, when it comes to her Baby Blue, all bets are off.

Kupa knows of Zombies, ganstas, and tattoos.  She knows of bats, chains, swords, and guns. Truth be told, she knows of all things badass. Kupa knows bad mamma jammas who are so bad, and so jamma that when they dare come into public – she never uses their real names. Coincidentally enough, Kupa also knows her way to Indiana.

Your Kupa tells me she’s heading to a small town in Indiana to tend to some business regarding her Baby Blue. Word on the (underground) street is – she ain’t rolling alone.

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

Stay with me Sweet Boy,

xoox

Momma

Stupid people scare me more than zombies…or ganstas, so there.

Diddy, Cancer is stupid. And people are stupid. I try to ignore the stupid people of the world the best I can, but as it turns out, I am not good at it. I guess because I’m still human. I wish I were a zombie. Then maybe I wouldn’t be bothered by stupid, ignorant people. I would just rip their hearts out and eat them, perhaps making them feel a fraction of the pain I feel on a daily basis. Auntie Kupa would be jealous; she would rather be a zombie too. Sometimes the stupid people of the world say stupid things like, “Oh, I know how you feel, because when my mom died….we ALL have the flu this week – you can’t imagine the chaos…my son had his tonsils out and it was tortuuuure…my boss made me have the worst week of my life”. Please hold on a minute while I rip out your brain; as it turns out you’re not using it. Thankfully, your good, pure, kind Daddy is here to talk me off the ledge “…everyone else’s life has not stopped just because ours has…that IS a crisis to people who still live in our old world.” I am not ignorant. I am aware other people are suffering to make it through each day. In fact, I know there are even many, many other moms and dads who have lost a child. But guess what? They didn’t lose you, Paxton. So there is no comparing or justifying. You are you, and you are mine. Therefore, nobody else knows the depth and breadth of this pain. This pain is my own, this sadness is my own, this loneliness is my own. I would never tell another bereaved parent, “I know how you feel.” Because I don’t. I understand some aspects of their heartache, but simply put, no two losses are comparable. It’s something that goes without saying amongst we “bereaved parents”. A certain understanding exists between the moms and dads pretending to live without our beloved children. Grieving Parent Street Code – I guess. (Admit it Diddy, it makes you smile to learn your Momma has turned out to be a little bit gansta.) The silver lining of today is the rainy gloomy weather. At least I have that going for me. First of all, it’s mid-January and 50 degrees…which is helpful in supporting my case that the world is truly becoming more fucked up by the day. And the rain adds just the right dirty, muddy touch to help express how I feel, without me having to say a word. I was even able to take a break from the tears on my way to work this morning. The rain strummed on my windshield, and the fog muddled my vision just enough to cry for me a bit; so I let it. Then I arrived at work, where I have to put on my fake, half-smile. Today especially sucked because I was trapped in a conference room filled with people who I can’t, and won’t, let into our world. When I’m at work, I have to use all of my strength to push the sobs creeping up my throat down to my tummy. I am better at containing throwing up than I am at containing sobs. But, I don’t want to push down the sobs anymore – just because the stupid people in the conference room wouldn’t get it. I want to drop to the fetal position and kick the shit out of the stained, blue, itchy carpet and tell everyone, in between sobs, that I am the one who needs inpatient treatment – not the kid who is there because despite loving America, proving so by saluting all things red, white & blue, is trapped in shackles and, therefore, can’t run from the bad guys who are chasing him. I wonder how different this world would be if we all acted the way we felt really felt instead of hiding everything behind our lip gloss and faux professionalism? I’ll bet it would be a complete mess; but at least it would be a TRUE complete mess, versus a FAKE and insincere mess. Truth be told, I’m not much different than my student who was ‘committed’ (again) today. Everything I say – or think, but don’t say (not because I’m trying to be polite, but because I’m too damn tired) is far from normal. I realize, and own, that I am filled with extra, spicy anger; but it goes beyond that. I don’t think about normal things anymore. No matter the conversation, no matter who it’s with – all I think about, as I lose track of what I’m supposed to be listening to, is why you got cancer. I play the game that I am so good at playing: it was the eye drops I used, the supplements I took, the physical therapy I made you go to at far too early an age. It was the changes of formula, the (way too much) Karyo syrup I (accidentally) gave you for his (non) constipation. I made you too hot from all the blankies, let you cry too long, laid you on his side instead of your back. When you were misdiagnosed; I didn’t push the doctors hard enough; I let the shock suppress my instincts to question and challenge. Mostly, I fear I simply may have determined your destiny long before you were born by choosing your name – Paxton. Daddy insists there is nothing I did other than love you just exactly the right way. He reassures me ten times a week that we did everything we could have possibly done to save you. He insists, repeatedly, the outcome would have been the same, no matter what. I still don’t believe him. (Somehow, your sweet Daddy keeps loving me all the same.) Everyone tries to pacify my “guilt”. I guess I have little credibility due to being the irrational, traumatized, broken-hearted Momma. I don’t need credibility though. I just need you back. That’s all, really. Goodnight, my love. Should you run across zombies or gangstas, tell them you are my baby; they will protect from the stupid people. I will look for you in my dreams. Stay with me, sweet boy. xoox, Momma Gangsta Love