No~Thank You, May.

Paxton,

May is here. I cannot do May.

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

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

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

Achhhk. May. Spit.

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

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

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

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

Stay with me, Sweet Boy.

xoox

Momma

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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

Go for Gold.

We are so close! Let’s not stop now. Let’s not stop at 25,000. Let’s blow this out of the water. Do it for my sweet boy. Do it for the 7 warriors who ended their fight with cancer today. Do it for the 46 children who will be diagnosed tomorrow. Do it … because it’s the right thing to do.

It is time for The White House to join this fight. It is time The White House lead the way in bringing awareness to Childhood Cancer. It is time The White House light up GOLD in the month of September.

This should have happened a long time ago. I’m still astonished how simple awareness has continued to slip through the cracks. Did you know George Bush Senior, had a daughter who died from Leukemia? I believe she was almost 4 when she ended her fight. Heartbreaking, right? You would think the personal devastation of the most powerful man in the world would have been the impetus in putting childhood cancer on the map. We had not one, but two President Bushes who could have done something brilliant…something huge. But as far as I can gather, not much was done. So here we sit now, begging for a petition to get the signatures it needs in hopes that The White House will say YES to lighting the White House GOLD for the month of September. This is not something we should have to beg for. I begged for the life of my beloved Paxton. Begging for signatures just seems silly, but, I am not above it.

I hope President Obama, takes a stand on this cause. I hope the First Lady gets involved too.  (I love you Michelle – but kids are not dying left and right due to childhood obesity.) Do kids with childhood obesity have to go through harsh chemo treatments meant for adults? No, they do not.

Yes; I am begging for signatures on a petition I don’t even know if The White House will approve. Here I sit, at 3:30 in the morning, unable to sleep – tears streaming down my face not ONLY for the loss of Paxton, but for so many other beautiful warriors as well. All I am asking is for Childhood Cancer to be as recognized just like the other cancers out there. All I am asking for is for the color GOLD to be recognized just like the color PINK. Just make it equal. Why isn’t it already?

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

Thank you all who have signed and shared. Please continue to share with anyone and everyone.

Tears of Gold

(I love you Paxton.)

Warrior Momma

Holding Me Down

Sweetest Diddy,

Tonight, I cannot bear my pain. Tonight, I want to give up.

Nights like tonight, I find myself playing, this song over and over again. It rocks me to my very core. The more I think about it, the more convinced I am that Gabriel Kelley was a bereaved mother in his past life. (There is no other explanation for him taking the words out of my mouth and creating one of the most beautiful songs ever written.) Despite the darkness expressed within the lyrics, the song itself brings Momma a sense of peace. As it plays, I don’t even have to close my eyes to envision you tucked in my arms on that warm, afternoon in late June. It was one of the most painstaking, yet endearing, days we endured together. I am not brave enough to recount the extent of your discomfort ; nor is it necessary. Alas, after 24 – 36 grueling hours of unrelenting agony, you and I found temporary refuge in your bedroom. I am not sure why, and fear you may have simply grown weary from sobbing and/or from the unwavering aches and pains, but you found comfort enough to let your cries temporarily subside. So there we stayed, rocking as one, for five beautiful, unabridged, unforgettable hours.

We covered a lot of topics that day. We shared secrets, dreams, fears and wishes. We listened to music on my iPhone, and sang other songs I made up on the cuff. I vividly recall the view outside your bedroom window of the summer sun disappearing behind the horizon. I remember pleading with the sun, through tear-filled eyes, to find a cure for you before coming back in morning. As the bittersweet afternoon morphed into evening, I mindlessly scrolled through my phone, while simultaneously rocking you. I came across a link your Uncle Stephen posted on his Facebook page. Accompanying the link, a brief statement explaining that while at Gabriel Kelley’s live show, (the song) “…brought me to my knees”. Your uncle is one of the most brilliant, introspective, kind, and gentle souls I know. When he speaks, there is bound to be meaning in his message.

This incidence afforded no exception. Without uttering a single word, Uncle Stephen (and Mr. Kelley’s genius talent), unknowingly relayed the most life-altering news. The anger, the fire, the smoke, the heartache – – the reason it was hard for me to breathe – – could no longer be denied.

I hope you remember that day with even the smallest bit of fondness. It would be selfish for me to ask for it back; as you were in far too much pain. Yet, I would give anything to hold you in my arms, feel your skin against mine, and listen to you breathe.

I wish you didn’t get sick. I don’t know why this all happened. I will never, ever forgive myself. I am sorry. I am sorry. I am so, so sorry.

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

Stay with me, sweet boy.

xoox

Momma

Sorrow: masqueraded with a smile.

Little Diddy,

Momma is bursting at the seams with pride, thus needing to talk far too fast for Daddy to keep up. So I need to bend your ear to tell you about all the wonderful things that have been happening. (If you are busy, just smile and nod while you pretend to listen. I understand.) The past few days I have received so many unexpected messages which have made me smile. Each one of them were about you. It takes a whole lot of super-packed power to make Momma smile…especially on the outside, these days. You have managed to do the trick, at least three times in three days.

On Monday Ms. Sara told me about an extremely kind donation, accompanied by an even more endearing message, Team Paxton received from a man named Nick. Nick has a heart of gold. Momma went to high school with him, but he graduated with Lala. (My guess is it won’t be long before you notice the trend in people reigning from Cudahy and this heart-of-gold quality…just saying.) To remind you, Nick sent a bucket of goodies to CHW in June when we were inpatient. I was stunned to learn he knew of your diagnosis, but more so that he took the time to find, purchase, and send a goodie bucket filled with nuks, squeaky duckies, and crochet hats all the way to Wisconsin just to let you know he was thinking of you. Over the weekend, Nick made a generous donation in honor of your upcoming 1st birthday. He has a beautiful daughters of his own, lives out of state, hasn’t seen me in 20 years, and never had the good fortune of meeting you. Yet, your indomitable spirit has impacted Nick in ways I am certain he could not even explain. When you have a chance, can you please watch over Nick’s beloved little girl and see to it that good things come her way?

Yesterday I received an email from Lisa, the Patient Care Manager at CHW. She wrote to let me know that the hangers Team Paxton purchased for the floor have served as a tangible, and cherished, example of how ‘…little things make such a big difference’. She too is moved by the way in which your impact on this world continues to persist, despite your far too abbreviated time here with us. She and I have a plan in place to help purchase a (much needed, highly coveted) blanket warmer for the HOT unit floor. Do you remember how much you loved those warm, toasty blankies…especially after imaging, transfusions and surgeries? As you already know, there are no blanket warmers on the HOT unit. The warmers are only downstairs by the CT scans, ultrasounds, MRIs, and at the MACC Clinic. Momma always did her best to sweet talk the nurses into getting you one when proximity allowed. Or when Nurse Renee was on hand to hold you tight, and keep you safe, I would go on a commando mission and find a warmer unit (tucked in some secret cubby, in a dark hallway, behind a “Staff Only” door) and ‘borrow’ one for you. I didn’t mean to be defiant; I just needed things to happen faster when it came to making you comfortable. Nonetheless, once we were trapped on the HOT unit – no warm blankets were available. I know you agree – that was some serious bullshit.

Tonight may well be the most touching message I’ve received yet. It came from a complete stranger. She learned of you, your brave fight, and your beautiful soul through an interview Ms. Sara and Ms. Kate did on Morning Blend earlier this fall. Unable to shake the impact you made on through a t.v. screen, and a few still-shot pictures – which encapsulated your contagious smile – she contacted Team Paxton. She is a mother of a precious little girl, Clare, who was born on February 12th, 2012. Just like you should be, Clare is turning 1 next month. Her request: permission to ask the guests coming to Clare’s 1st birthday party to make a donation to Team Paxton, in honor of YOUR 1st birthday, in lieu of buying her daughter a gift. I cannot yet articulate the array of emotions this gesture bought to my soul. Among them – honor, endearment, jealously, sadness, joy, love, spite, curiosity, anger, resentment, happiness. For tonight, I will focus on the most positive of all – which only your life spark can continue to bring me – unexpected and uncanny pride…accompanied by a smile.

Sad Smile

I am so humbled and honored to be your Momma, Paxton Bowe Andrews. I do not suspect I will ever understand how I got to be lucky enough to have you as my son. I wish there were some way I could have protected you from cancer – not to mention all the inhumane, unacceptable, torturous procedures I allowed to happen to you in your brave fight. None of it is right. Not one single thing. Thank you for loving me despite all of my many flaws. I promise to love you until the end of time…and forever and ever after.

Thank you for making me smile, My-My. Though it is merely a temporary mask for my pain ~ it is still a smile. And it is for you.

I will look for you in my dreams.

Stay with me, sweet boy.

xoox

Momma

Burt’s Bees & “Little-tiny-bear” Kind of Day

Lil Diddy,

There’s one good thing about it being a weekend…besides not having to get up far too early for someone who falls asleep about 20 minutes before her alarm goes off. On weekends, I allow myself to use your Burt’s Bees Lotion on my chest (right over my heart). Having a scent of you with me all day, makes me feel a tiny bit closer to you. I would use it every day, except that Burt’s Bees made the only bad decision ever – and discontinued the particular lotion. Right after you were born, your genius Nana went gangbusters and bought every bottle she could find – on eBay – even though they were five times their original price. Today, however, is one of those days where I let myself bend the rule a little. I used your lotion on my entire body. I am extra sad today; therefore, I need extra more of you with me. I also stole Little-tiny-bear from your room and put him in my purse. Little-tiny-bear was a late comer to the scene. He arrived in mid-June, but you sure loved him. Not only is super soft and snuggly, he was just the right size for you to grab onto and hold in your hands. Little-tiny-bear stayed with you when I left your body at the hospital on July 2nd. He stayed tucked under your perfect, beautiful hands until Daddy and I picked you up from the funeral home…in a box. Little-tiny-bear was placed in the box right next to you, just as the funeral director promised.

I am still so mad at myself for leaving you at the hospital. I don’t remember leaving – I only remember I didn’t want to. I do remember making Daddy go back into the NICU room to get Giraffey and your potato blankie from Britta. I insisted he get your stuffed animal & a blankie – but, I didn’t insist he go back into the room and grab you. What kind of Momma thinks like that? I guess one who is having an out of body experience because her beloved son just died. But I still will not forgive myself for it. Another thing that tortures me about my behavior on July 2nd is that I didn’t bath your precious body – – one last time.  Even though your spirit had gone, your body was still there with me.  I should have bucked up, pulled myself together, and been a Momma. Instead, I asked your favorite girlfriend, Nurse Renee, if she could do one more favor for me and give you a bath. Of course she agreed. But, Nurse Renee is not your Momma. Nonetheless, she was the last one to give your body a bath. In turn, she put the last diaper, and the last outfit, on your precious body too. I am so sorry, sweet boy.

Daddy and I are going to run errands today. We are going to go in and out of the house, the car, and the stores without juggling 18 things that came along with transporting you with us. I hate the ease in which I can come and go from place to place. I long for the days when it was necessary to invoke super-Sheerah powers in order to remember, carry, and balance the bottles, diapers, blankets, bags, change of clothing, nuks, Giraffey, car seat…and my most precious cargo of all – you…everywhere I went.

I wonder what you would have done today to make me throw my head back, laugh out loud, and thank every angel in the world for sending you to me.

Thank you for being my baby. I love you. I miss you. I hope you are safe.

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Stay with me, sweet boy.
xoox,
Momma

It will take an eternity to break us

Diddy,

Ms. Whitney unexpectedly passed away the day before you were born. In a state of disbelief, our nation sought comfort through revisiting some memories of her glory years.  Whitney’s most infamous hits made a resurgence on the music scene.  It was a bittersweet experience.

That being said, it wasn’t really my fault that this song became one of “our” ballads.  Again, I apologize for streaming it through our iPad a little too often, and for singing it a little too loud.  It’s just that I was clinically delirious from falling head over heels in love with you…and, I just so happened to mean every single word.

Because it’s been far too long, and because I’m still head over heels in love with you, this is your song for tonight.

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

11 months…and my bad dreams are better than my brutal reality.

Paxton,

It’s hard to believe it was just eleven months ago today that you made my heart, my soul, my world whole. It’s all hard to believe.

I had a dream last night. It was a perfect reenactment of the day you were born.  I was in room #4, with Daddy, Lala, Nana, Grammie…and, even nurse Jenny. Except, this time, when you came out the doctors and nurses wrapped you up in those little, white, baby blankets and carried you away.  They didn’t let me hold you. They didn’t even let me see you.  I tried to get out of the hospital bed to run after you, tried to scream your name, scream for help. I couldn’t move. I couldn’t speak.  Suddenly, everyone else was gone too.  I could hear their voices; but I was alone.  Not surprisingly, the only person I wanted to find…needed to get to, was you.  In a panic, I couldn’t get myself unhooked from the hospital bed.  (I know those beds like the back of my hand. I spent so much time strapped into one when we were there together in late November, early December – hooked up to monitors, belts, and alarms. All eyes were on you, Paxton; everyone was watching and tracking you…no one more closely than me.)  The whole bad dream scene startled me awake. For a brief moment, I was actually relieved to realize it was a dream. The next moment, however, I realized you were still gone.  Hot tears began to stream down my cheeks. I wanted to run down to your room, just to be sure. But, the pain in my heart reassured me I wasn’t dreaming anymore.  Somehow, my real life is far more disturbing than my bad dreams now.  In attempts to anchor myself, I did the only thing that helps me survive those long, dark, frightening nights: I rolled over and held onto Daddy as tight as I could.  Sometimes, when I concentrate on his breathing, I am able to cry myself back to sleep.  Thankfully, last night was one of those times.

I spent most of the day trying to erase the dream from my head. I didn’t tell Daddy about it.  It’s obvious the dream is a parallel with how I amble through each day. Therefore, I didn’t find the need to psychoanalyze it.  You were here. You were real. You were mine. Without permission, right under my watch, cancer stole you out of my arms. I couldn’t run after you; I couldn’t scream for help; and, despite the army of love surrounding me, I am alone in this pain…which is holding me hostage. Most of all, I ache to be with you.

I wish I could have seen your face, sweet boy.  I won’t stop looking.  I know you will come visit when you can.  And, I will be here. I will always, always be here.  Say the word, and I will come running. Not a dream, not 100 straps and alarms, not an army, not even asshole cancer will stop me this time.

I miss kissing you on the very inside of your neck.  I miss everything else too.

Stay with me, sweet boy.

xoox,

Momma

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I am on fire; Paxton is my fuel.

It is impossible to measure the impact childhood cancer has on its victims and their families by using statistics. But research funding decisions are often based on numbers. Here are some facts about childhood cancer; if you read these and are not shocked into motion – you can’t possibly be human.

~ Childhood cancer is the number one disease killer in children.
~ Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
~ There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
~ The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
~ 35,000 children are currently receiving (grueling and inhumane) treatment for cancer.
~ The causes of most pediatric cancers remain a mystery and cannot be prevented.

~ IN THE PAST 20 YEARS, ONLY ONE NEW CANCER DRUG HAS BEEN APPROVED FOR PEDIATRIC CANCER! ~

Cancer kills more than 2,500 children in our country every year. In the next 365 days, over 13,500 children will be diagnosed with cancer. I feel these numbers are significant. But, the potential market is simply too small to attract the attention of our private industry. Thus, the role of the taxpayer-funded National Cancer Institute (NCI) is especially critical. While the NCI controls billions of taxpayer dollars, it releases less than 3% of its resources to specifically help children with cancer. (Ironically, some of the most significant advances in the battle on cancer in general have been made by studying childhood cancers.)

I find these statistics to be stunning. I find these statistics to be offensive. I find these statistics to be unacceptable. My sweet boy is anything BUT a statistic.

I’m on a mission today. I am pissed today.

Paxton, you should not be gone. I will find a way to make the statistics surrounding childhood cancer improve. I will insist that we soon live in a world where eradicating childhood cancer from our society tops our politicians’ agendas instead of banter over taxes, guns, and “forbidden” love. I will not be quieted; I will not be intimidated; I will not be ignored. I will see to it that our voices are heard – yours and mine, Diddy. Take my hand, we’ll make it I swear.

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Stay with me, sweet boy.
xoox,
Momma