i have a hang-over. please pass the kleenex.

Paxton,

This past weekend Momma went on one hell of a bender. And not the too much fun, due to too much wine type bender. It was an emotional bender – of epic proportions. One caused by mixing too many feelings, in too short of time…and not being capable of sleeping them off. My Lovelies arranged a gorgeous event fit for a queen, rather a princess, last Saturday. Marygrace lead the charge on pulling it offdespite my insistence that it was not necessary, and my pleas to not make me do it, she ultimately convinced me that it was exactly the exact thing I needed. I knew she was right. Grace is almost always right. (Almost.) I also went along with it because of my obsession of doing ‘everything different’ this time around. I’m playing a Jedi Mind trick that ‘doing everything different’ this time, will keep cancer (and frauds) at bay.

So even though my heart was saying ‘no’, my mouth agreed to let my Lovelies sprinkle me with good, pure love. But it took everything I had NOT to cancel on them. And they knew it; which is why Lala showed up at my house an hour prior to “start time” to be my chauffeur.  As we drove along, in order to not tell her to bust a U-turn and take me home, I preoccupied myself with a stern talking to. “You cannot cancel on your friends. Look at all they have done for you. As much as you want to hide, you just cannot. Not today, Danna. Make good on your word. Spend this day with your friends who love your spicy ass so much.”

I had to take a lot of mental time outs to get through the day. I’ve become so exquisitely versed in ‘blacking out’, while seemingly carrying on as normal, that I’m convinced even Lala & Grace don’t know when I’m doing it. The entire affair was as beautiful as it was difficult. I don’t ever experience a moment of pure bliss anymore. For even the purest of moments are tainted by the fact that you are dead. For obvious reasons, today’s near-bliss was particularly tainted. Throughout the event, I had many moments of happiness, but many more moments of complete and utter sadness, pain, shock, and just a feeling of being overwhelmed. The overwhelmed ‘panic-in-my-soul’ feeling never fully goes away. I suppose it makes sense that I am forever riding the cusp of a panic attack. I have suffered the greatest loss one can endure. Conversely, I now have the greatest gift growing inside of me – for which I am immeasureably grateful. Even as I oh-so-cautiously prepare for this precious life to enter the world, I feel death lurking all around me, because I am still so heavily grieving the loss of you.

Life. Death. Two dichotomous, yet equally powerful forces are literally at war inside of my heart. I want so desperately to experience true and unconditional love again, but am just as desperately afraid to allow myself such a luxury. Mostly, I am afraid because everything I have ever loved, I have lost.  But also because I fear that in loving a new life, I will somehow abandon a portion of the immense love I have for you. Even as I write this, the notion of anything or anyone being able to make me love you, even a fraction of an ounce, less sounds ludicrous. Yet, these are the thoughts which race through my mind on a steady loop.  

Not a day passes when I don’t take pause to realize how lucky I am to have these women in my life. The whole lot of them are one in a trillion. But I am also very aware of why they are here. They are here, in full-force, because you are gone. My Lovelies have always been integral forces in my life, yet the beautiful roles which they have stepped up and so seamlessly and selflessly assumed in your Momma’s shit-balls-crazy life is well beyond my capacity to understand. Suffice it to say, I am eternally indebted to each one of them for surrounding me, holding me up, and loving me … loving you, and loving your little sister too.

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I sure hope you don’t mind the explosion of pink that went off in your room today.

Stay with me, Sweet Boy.

xoox

Momma

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Really, Mr. President? And, maybe Nickelodeon should get cancer.

Diddy,

Today I am filled with anger, disgust and disappointment. I know I am not alone in my reaction to the news far too many moms and dads around the country received today. The news came in an email from a man named Barack Obama. Though I am not naive enough to think he actually took the time to generate the message. My best bet, he took just enough time to direct someone in his office to draft a standard kiss-off to all us childhood cancer parents. It was his attempt at explaining why he vetoed our petition to turn the White House Gold for one day during the month of September.

To add insult to injury, the message used the very statistics we are railing against. Mr. President, and anyone else who still does not have a clue: the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, the only thing that is clear to me is that we have grossly different interpretations of the word “progress.”

The icing on the shit-cake, he/she/whoever wrote the lame ass email was brazen enough to throw in a plug for the Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like you…if, of course, you hadn’t already been killed by CHILDHOOD CANCER. However, that is not the point. This was NOT the time, nor the place, to advance his political agenda. This was his chance to listen. I can’t help but wonder what his stance would be if he and Michelle received the crushing blow that Malia or Sasha had cancer? Would that be enough for him to be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos? What is also disheartening is that pink light bulbs aplenty, needed to illuminate his tax payer supported home in October, have surely been purchased and are sitting in waiting. Because, you know, boobs matter more than kids.

The White House should be GOLD. But more importantly, kids with cancer deserve more funding from our government. How can we make this happen? How much more blood needs to be shed? Are people really not aware or are we just plain being ignored? I am doing my best to help spread the awareness. I feel like childhood cancer is being talked about, everywhere; but I realize that is likely because it’s the world I live in now. The bottom line: We didn’t ask for much, Mr. President. We simply wanted some fucking lightbulbs changed out for one day.

On the heels of Barack’s ballsy move to send the message (loud and clear) that he simply does not care about kids with cancer, The Empire State Building also DENIED our application to light up GOLD for one day in September. It will, however, turn Orange in honor of Nickelodeon on September 16th. Gag. Puke. Poop. (You should be ashamed of yourselves, Empire State Building. But, my guess is you are probably too busy watching Sponge Bob Squarepants to give a shit.)

This is an outrage and beyond insulting. None of this makes sense to me. I simply do not know why more people are not screaming from the rooftops…and/or jumping off of them…over the vast injustices in the plight of being a child with cancer.

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That is enough for now, little man. Thank you for loving me even when I am saucy and sassy. Thank you for not giving up on me – despite the fact my efforts to carry on your fight are being met by brick walls and empty promises. (Don’t worry, Momma will never stop fighting your fight or honoring your legacy.) Most of all, thank you for being my son. Even though days like today make it hard for you to realize: you bring my soul more happy than sad and my heart more joy than pain.

Stay with me, sweet boy.

xoox

Momma

home is where your lala is.

Paxton,

It’s official. Lala and Uncle Stephen have moved to town! It is hard to process all they’ve done, and undone, in the past four months. Besides the obvious upheaval moving one’s family across the state entails, your Lala is severely allergic to change. All who know her know this to be an undeniable fact. For example, Lala has still not been able to ‘part’ with her sticker collection. She’s been hauling around albums upon albums of stickers for 30 years…yes, 30. She has, however, finally parted ways with her straw-wrapper collection. You heard me Diddy; your crazy daisy Lala used to save the wrappers to the straws she drank her milk with at lunch in 6th grade. (Promise. Ask Nana and Papa.)

Alas, when the shit-of-all-shit hit the fan, Lala could be kept at bay no longer. Without further contemplation, she and Uncle Stephen listed their house in spring. It sold in four days. Without further ado, they began their search for a new home in the Milwaukee area. They found just the perfect one, in just the perfect neighborhood. In turn, your cousins are the new kids on the block, and they will be the new kids at school this fall. Lala will quit a job she loves, and will eventually take one she may or may not like at all. For now, she is living with a friend in Madison, and coming home on the weekends. Uncle Stephen is manning the three kids, two puppy pups – one who cannot walk, and a house in half-moved-in, full-court chaos. (Just another example of Uncle Stephen’s heart of gold…and patience of steel.)

After three sticky, icky days of packing the Madison house and then the most enormous U-haul truck known to man, the Siodlarz family set out on the final leg in their relocation to Milwaukee. Your uncle drove the U-haul, which was pulling another U-haul trailer. (A last minute, “Oh shit. Our stuff isn’t going to fit!” required an impromptu additional trailer rental.) Your Lala was driving the kids and puppy pups in the chocked full mini-van…which, for visualization purposes, was also outfitted with a very stuffed car-top carrier. (Because apparently they still make those?!?) As she made her way from the Beltline in Madison to I-94 towards Milwaukee, an unmistakable message from you emerged high in the sky. In a state of giddy disbelief Lala reached for her phone and called me. She said, “DD….guess what is staring me right in the eyes?!? The most beautiful, vibrant rainbow I’ve ever seen! I don’t know about you, but where I live, not a single drop of rain has fallen in weeks!” I couldn’t get a word in edgewise because Lala was hyperventilating in a half-laugh, half-cry. It didn’t matter. Nothing more needed to be said. We both knew it was you thanking Lala for coming to get your Momma.

A relocation of such nature would be a huge undertaking for any family. But for Lala, it is unprecedented. The realization that Lala and Uncle Stephen uprooted their family, their home, their children and their careers largely in efforts to live closer to Momma is astonishing…and humbling. The love and support they’ve provided throughout the past few years has been unwavering and steadfast. This, however, supersedes my wildest imagination…even from Lala the Wonderful.

Over the past six weeks, I travelled to places both old and new. I set out on that journey in search of peace. To be honest with you, I did not find the peace I was so desperately seeking. However, I’ve come closer to accepting that given all I’ve lost in the past year – my soul may simply never be quite the same. Perhaps the peace I’ve been seeking, the kind that once lived deep inside of me, is not meant to ever live there again. I can’t begin to imagine what the future holds, nor I’m I interested in trying to guess. For now I am channeling my energy into staying “present in the present”. In this moment, I can feel pieces of my broken heart shifting closer together. Your Lala and Uncle Stephen’s unbelievable demonstration of support is the synergy behind this shift. Even if the pieces don’t ever completely converge, I am grateful beyond measure that five very big pieces of my heart are now merely a 15-minute drive away.

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Close those baby blues. Sleep sound. Worry not. We are going to be okay. You and me together…we can do anything, baby.

Here is your lullaby for tonight. It’s in honor of your “One”; your Lala.

I miss you. I love you.

Stay with me, Sweet Boy.

xoox,

Momma

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

Diddy,

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

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

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

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

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

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

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

I miss you. I love you.

shot through the heart.

Stay with me, Sweet Boy.

xoox,

Momma

the weekends are slow. your momma is fast. let’s move to france.

Little One,

“Tu me manqués”.  In French, that translates to “You are missing from me.”  I love that – as it is far more accurate than to simply say, “I miss you”.  (Although, also true.) Today is June 2nd…as of today, you have been missing from me for eleven months. You will be missing from me, every single day, for the rest of my life.

“Tu me manqués.” The French are brilliant.  The French are sexy. The French are in love with love. The French also love bread. Best of all, the French drink wine…all the time.  My friend, Lisa, in Los Angeles may be onto something in telling me to take my broken heart to France.

This weekend was not an easy one. Most of them aren’t. For the first time in my life, I am NOT a fan of the weekend.  (Don’t ask me how I intend to get through summer….which is, in essence, one never-ending-torturous weekend.)  The weekends go extremely slow. Each day is impossibly long – and the nights, well, those are even longer.  As usual, I spent most of the weekend alone. My company basically consisted of my thoughts.  Well, my thoughts and a Milwaukee County Sheriff who introduced himself after pulling me over on Saturday.  “Hi. Not nice to meet you sir. Yes. I know why you pulled me over. You want to make my day shittier than it is naturally.” I was flying, Paxton. But, it was not entirely my fault. There wasn’t another soul on the road…the sun was out…and JT was on the radio. Further, I was driving Nana’s brand new whip. Given it is far sassier than Momma’s car, I couldn’t even tell I was moving – much less that I was going 80 mph. (Yes, I know…a tad excessive.) In addition to accidentally speeding, there was no ‘proof of insurance’ in Nana’s car. So, the friendly Sheriff gave me a ticket for that too.  Truth be told, the Sheriff actually was quite friendly – but only because he found me to be quite amusing.  Ultimately, he felt badly enough that he “gave me a discount”…and only charged me for 19 mph over, instead of 25 mph, which apparently significantly reduces the price of the ticket.  But I’m still mad at him.  Needless to say, despite the fact that Mr. Sheriff and I got along swimmingly, Momma is still out a million hundred dollars, 4 points, and a squeaky clean driving record. To salt the wound, I was racing around town to get to the store to buy food to make a “dish to pass”…for a party I ended up not being able to attend. Quite an expensive dish to pass right into my garbage. But, I did anyway – because, I could care less.

I wonder if they have speed limits in France? I bet they don’t…at least not for moms who’ve lost their only child – especially when she’s en route to a party, which marks the first real plan she’s had in three weeks.  If the Municipale accidentally pulled me over, for accidentally speeding, I bet un policier would’ve given me a hug, a baguette, and a bottle of wine. He probably would’ve told me to screw the appetizer – and advised me to head directly to the party, as fast as I damn well pleased.

So another day, another weekend, another month without you has come and gone. Life without you is so abundantly sad and wholly empty that words will never suffice to explain it.  I know in the very, very depths of my bones that this was not your destiny. You were not supposed to get sick. You certainly were not supposed to die at the age 20 weeks and 1 day.  You were bound for greatness, Paxton. I am your Momma, so by default – I know things about you that no one else in the world could ever know. It’s not their fault that they don’t know; they are not your Momma. Being your Momma is my job, and my job alone.  Part of that job is to follow my instincts….the same instincts that kept telling me something was very wrong with you.  My intuition also tells me that there is something very wrong with many things which have occurred in my life. I don’t care what anyone tries to riddle me in efforts to help make sense of complete nonsense.  I know I am right when I say…all of these “events” are entirely wrong.

lock bridge. paris.

This is a photo of the Pont de l’Archevêché in Paris – more commonly known as the “Locks of Love” bridge. This breath-taking attraction allures visitors from across the globe. Two people, who love each other, inscribe their names on a padlock, attach the lock to the fence on the bridge, and throw the key in the river. Legend has it, that this act solidifies their love as one which will last forever.  Momma needs to get to this bridge. I will get an extra fabulous padlock.  I will write “Momma & Paxton” on one side, and “Danna & Diddy” on the other.  I will lock up our love. I will throw away the key.  It will last forever…and ever…because France says so.

I miss you. I love you.

Stay with me, Sweet Boy.

xoox,

Momma

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

Paxton,

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

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

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

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

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

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

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

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

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

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

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

Stay with me, Sweet Boy.

xoox

Momma

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

A sign. A sigh. And I just miss you.

Sweet Boy,

Thank you so very much for the sign you gifted me the other night. It was one of the most special, endearing, and distinct ones you have so graciously sent to date. (It was no baby giraffe drinking from a bottle…but, it was pretty damn close.)  And, of course, I so appreciate that you made sure to save it for a time when I needed it so very, very much. Not only are you good, kind, brave and funny…turns out you also happen to be quite bright to boot.

Each time I come to the edge of all the light I have, you find a way to reassure me that I am not alone. You find a way to let me know that you are, in fact, right by my side. Diddy, with the dawn of each new day, I draw a bit of strength, fight, hope and grace from you. Though it pales in comparison, I will continue to conduct myself in a way I hope makes you proud to call me your Momma. I will continue to carry you in my heart, my bones, my blood, and my soul through all of eternity.  I will continue to believe in you…I will continue to believe in us…I will continue to believe in our indomitable bond.

Littlest Warrior

I miss you. That is all. I miss you.

Stay with me, sweet boy.

xoox,

Momma

Stuck.

Diddy,

I am stuck. I am downstairs on the couch, Daddy and Lucas went to bed nearly four hours ago. I am tired; in fact, I am exhausted. Once again, I am stalling the inevitable close to another day. Any sensible person would take one look at me and tell me to ‘go to sleep’. They would likely add some sage advice, such as “…you’ll feel better with a little sleep”, or “you’ll feel better in the morning”. I cannot sleep. And, no, Soothsayer, I won’t feel better in the morning. If you want to know the truth, chances are I will feel worse. For the love of licorice, I am a Bowe; I have never liked mornings. I think I may have a severe allergy to them. (Ask Nana and Papa, they can attest that this has been a life-long condition.)

I have been dreading the entire month of February…since the month of July. Despite my pleas for some omniscient power to freeze time – or better yet, turn back time – the world has continued to rotate on its axis. Without my consent, the sun has persisted to rise and to set. The long days, and even longer nights, have compiled into weeks; and the weeks have have proceeded to roll into months.

Alas, here we are…February 5th. Exactly one week away from your 1st birthday. Given the preoccupation I’ve had regarding next week, one would think I would have found a way to better combat the darkness which now completely engulfs my insides. I now know for certain, that not even kryptonite would prove powerful enough to ward off the grief of childless mother.

In her recently released ballad, Pink has seamlessly managed to compose my love song to you. She has done so far more articulately and beautifully than I would ever be able. That being said, here is your lullaby for tonight. May the lyrics wrap around your heart and the message soothe you into a peaceful slumber. May you know in the deepest part of your soul that although a minute would not nearly be long enough – Momma would give anything to have just one more with you.

I hope you are safe. I hope you are warm. Most of all, I hope you are happy.

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