gold is the new pink.

Diddy,

September is nearly over. You know what that means, “Childhood Cancer Awareness” month is drawing to a close. I had big hopes for September this year. My ultimate goal remains that Gold:September will soon be as wide-spread as, and synonymous with Pink:October. For weeks, I have been in the middle of writing a post about all which has been unraveling surrounding my plight, and the plight of some of your favorite PaxLovers (LaLa, Erin, Dan, Meg, Allison, and Matt). Everytime I turn around, it seemed as though a new development has unfolded. In the end, I decided my energy would be better spent trying to make a real difference in this fight than to stop, even for a minute, to document my thoughts about how it shouldn’t be this hard to get people to pay attention to childhood cancer.

There are some special people, in high places,  who are paying attention…and joining our fight. One of the accomplishments I’m most proud of are the many different Proclamations that officially declared September Childhood Cancer Awareness month. Mayor Tom Barrett, City of Milwaukee, lead the way. Without pause – he declared September Childhood Cancer Awareness month in Milwaukee – in your honor. Following Mayor Barrett was Steve Ponto, Mayor of the City of Brookfield and David Ament; Mayor of the City of New Berlin; as well as a personal favorite of mine – Dan Vrakas, County Executive of Waukesha County.  

In less officious forms, several communities actively generated awareness as well. On September 20th, PAX Luminary bags lined the streets of neighborhoods all around the Milwaukee area. There were also several individuals who put a twist on the now infamous ALS Ice Bucket Challenge and chose PAX as their foundation of choice. In fact, close to $1,500 was donated to your foundation throughout the month. The timing couldn’t have been more appropriate. 

Unfortunately, there are some seriously disappointing events which have resulted from my efforts to keep Childhood Cancer Awareness on the forefront of peoples’ minds. These unfortunate occurrences have sent Momma into a tailspin. After much consideration, I refuse – simply refuse to give them any god damn air time – for now. For now, Sweet Boy. But as I always tell you, in time, “…shit always floats to the top”.

One thing I must give air time to is the refusal of the Empire State Building to light up Gold for one night during the month of September. The thousands of requests which have been made by desperate, yet hopeful, parents have been denied for some seriously lame ass reasons. The ESB lights up for pretty much every cause out there, but apparently childhood cancer is not worthy enough to be one of them. One night last week, it was lit green to promote the premiere of the  Teenage Mutant Ninja Turtles movie. Promise.

During your treatment, and nearly every.single.day.since, I felt overcome by the overwhelming notion that you were being experimented on like a lab rat. I don’t understand how you had the biggest team in the history of Oncology at CHW, composed of the smartest people across the land, and no one could come up with an answer….not a single fucking answer. It still burns my soul that your death certificate, which I will never open, but inherently know lists your official cause of death as, ‘undifferentiated sarcoma’.  To those who are lucky enough to remain blissfully unaware of the world of childhood cancer, “undifferentiated” loosely translates to: “We don’t really know what kind of cancer your baby has…and without knowing what we’re treating, we couldn’t identify a protocol to treat him. So he died.”

I refuse to turn the other cheek and accept that more strides haven’t been made in the world of childhood cancer. It didn’t take long to learn that childhood cancer seems to be a dirty little secret that nobody wants to talk about. But, if nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and kids will continue have the same grim outcomes. Until things change, I plan on fighting the only way I know how. The way that you  taught me – by being as spicy as possible.

Through my new network of parents, who belong to the “club” no one wants to be a member of, I started to hear the soft roars of brave parents who are trying to accomplish some of the same things I am – only to be met by one brick wall after another. As the month moved on, these soft roars became louder and louder. Eventually it seemed as if the entire world (at least in my corner of the universe) was entranced by this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all Empire State social media pages. The outrage intensified when they noticed their posts about anything childhood cancer related, started to disappear as well as pictures of their children. It was as if, much like our beloved babies, this “dirty little secret” was expected to die and be buried.

The Empire State Building grossly underestimated the advocates of childhood cancer community. We are not merely promoting a Hollywood film, or a front-runner for a Democratic Convention, and we could give a shit about the release of Mariah Carey’s new CD. We aren’t merely advocates – we are parents. Parents who were forced to watch our child fight for his/her life…while we helplessly stood by and watched them slowly die.  We are parents trying to change a very dark world by giving it a beam of golden light to help ignite this change. We are simply trying to give other kids a chance so they can grow up to do the amazing things that I know you would have done.

I want a face-to-face with the heartless bastard who operates the ESB. I wouldn’t need, nor want much of his time. In fact, I’d simply ask him one question, just one:

“What if it were your child?”

Huh?

What’s that you say?

If it were your child, you would want the best awareness, funding, and treatments possible so you wouldn’t have to kiss your baby’s urn every night instead of tucking him into bed?

That’s what I thought you said.

Jackass.

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Close those baby blues and sleep tight lil’ one. If you need me, just call my name.

Stay with me, Sweet Boy.

xoox,

Momma

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go get my girl.

Paxton,

No. No. No. Not again. I simply cannot do ‘this’ again.

Our beloved Ms. Nicole is so very, very sick. She is so sick that no one is saying what everyone is thinking; Nicole.may.not.make.it. Which is precisely what has been running through my mind on a constant loop: “Nicole cannot die.” “Nicole cannot die.” Diddy, Nicole cannot die – because she has so many reasons to live. This is all so entirely fucked up and beyond unfair I could light the world on fire with my rage.

At this point, no one knows quite what went wrong, all we know is that Nicole, a 26-year-old picture of health, grace, strength and beauty, went into acute liver failure and desperately needs a new liver – and she needs it now. On July 8th, we thought our pleas were answered, as a match had been secured, and a liver was on the way to save my super-hero sidekick. After 14 long, torturous hours of waiting, the Transplant Team ultimately determined the liver was not going to work. How is that possible? How is any of this possible?

Only a few days ago, Ms. Nicole was on top of the world. She started out her summer with two a-days workouts, sunbathing and wedding planning. She is punch-drunk in love with her hunk of a fiancée, who she is marrying next June. In fact, just last Saturday she bought her wedding dress. It was the very first one she tried on. Overcome with excitement, she sent me a photo of her in her perfectly-perfect dress. Her smile was so bright and bold it nearly overshadowed the beauty of the vision of her in that perfectly-perfect dress. Almost. Now she’s in a coma, lying in ICU, and has been moved to the #1 spot on the National Liver Transplant waiting list.

Nicole has a Caring Bridge page, she has a Go Fund Me site. She is being sustained by a feeding tube and a PICC line.  Her insides are being infiltrated with an onslaught of steroids, chemotherapy, methadone, and dopamine. While her body is frail, it is swollen nearly beyond recognition. Nicole is fighting for her beautiful, bountiful life – and NO ONE knows how any of this happened. You already know that all the horrifying parallels of your fights have set a million and twelve triggers into motion for Momma.

I received a text from hunky Tyler today that said, “Nicole is in ICU…but, she is in Room #12. It is the best sign we’ve received so far.”

Nicole Grace. I am certain she and I are long-lost soul sisters. One of the many reasons I love her so much is because she has helped sustain my life during the darkest, loneliest parts of this walk – when the twists and turns took me lower, and the darkness got even darker, Nicole held my hand a little tighter. Further, Nicole possesses uncanny strength. She is strong-willed, strong-minded, and strong-bodied. In fact, the very definition of her name, Nicole, means: “victorious people”. That simply is no coincidence. She has lived up to her namesake in a hundred different ways. This simply must prove to be her greatest victory yet.

Please keep doing everything Momma has asked you to do. Now is not the time to rebel, my spicy little  monkey. Ms. Nicole needs you. Take good care of her. I will do my best to help her family and Tyler in any way I can. But I feel helpless. There is nothing I can do or say that is going to make this easier. All I have to offer is that I know what it feels like to watch the love of your life fight for his/her life. And I am not dead from the pain. Most of the time I wish I was. Nonetheless, I am still here. That’s all I’ve got. That and I am just so sorry.

I love you more than all the stars in the sky.

Go get my girl, Sweet Boy.

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xoox,

Momma

 

 

two years. too long. to the moon and back.

Diddy,

July 2nd. The date I last held you in my arms, as our hearts drummed in tandem. The date I last kissed your beautiful, perfect head and soaked in your sweet baby smell. The date of the worst day of my life…times two. This day will never get easier. I will never stop recounting every hour, every minute, every last moment that lead up to the last one we shared together. I will never forgive myself for not taking you to the doctor sooner. I will never stop wishing that I could rewind time and find a way to save you. I will never stop fighting your fight. Most of all I will never stop loving and missing you madly. Never. Ever.

Things have been unfolding like rapid fire on this side of the universe. With each new development, your existence is reinforced beyond one single, solitary, sliver of a doubt. July 2nd, began with a much-anticipated phone call. Given the date, I vacillated on whether or not it was right to take the call on the worst day in history. But, something in the deepest part of my soul told me a you had a message you wanted to deliver…and the timing of your message was no coincidence. I braced myself against the wall in the furthest corner of your bedroom, with Giraffey and Little Tiny Bear clutched in my sweaty, clenched palms as I did my best to process the information being relayed to me. As the words rolled off of the caller’s voice, tears of relief, joy and guilt burned down my face. Her words slowly turned into background noise, as I said over and over again, “…my Sweet Boy is pure, pure perfection.” Not only was the news perfect in every last way – the timing of it, naturally, couldn’t have been sweeter. I don’t know what I ever did to deserve you, Paxton Bowe; but, I will spend the rest of this life trying to make you proud.

My heart has never known such a juxtaposition of joy and sorrow…elation and guilt…relief and dread. Nonetheless, I wanted to throw you up in the air and tell you all about the wonderment and miracles which are coming our way. My mind in knots, my stomach reeling – and you nowhere to be found, I ran straight to the bathroom and threw up my breakfast instead. Twice. I guess once for each year we’ve been apart.

Your Uncle Stephen & Lala had a small gathering at their house in your honor. I will hate that those types of gatherings exist as much as I’d hate if they didn’t for the rest of eternity. Almost all of my lovelies were present; although the mood was light, everyone’s hearts were heavy. We did our best to wear fake smiles, complimented with faux-laughter and make-shift contentment. But, each of our souls was silently crying, while simultaneously wishing there were never a need for such a shitty reason for a shitty gathering. Shit-o-versary cards don’t exist…nor do shit-o-versary cakes or gifts. Because everyone knows there isn’t anything in the entire world that could minimize the shittiness of such a date: not cake, not cards, not packages in shiny bows. Not even all the people you love the most in the entire world contained in one room, holding you up, and telling you that you are not in this shit storm alone.

At nightfall, adults and children alike launched wish lanterns into the damp and dreary sky for you. Mine was so chocked full of kisses, I didn’t think it would lift from the ground. But it did. And, I followed its glow until it was swallowed by the moon’s clouds. Then I watched a little longer. I hope you saw this corner of the sky light up for you. I hope you felt the waves of love we sent to you. I hope you know how deeply and desperately you are missed. I hope you understand I would give anything in this mixed up world to trade places with you.

Thank you for the phone call. Thank you for my lovelies who surround me with their love, even though I don’t deserve it, nor have the strength to reciprocate it. Thank you for the greatest gift of all – being my son.

tyler knott empty

Stay with me, Sweet Boy.

xoox

Momma

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

Paxton,

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

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

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

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

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

I think I am going to throw up now.

Thank you for being my eternal sunshine.

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Stay with me, Sweet Boy.

xoox,

Momma

i’ll up the ante again. and again.

Paxton,

A memory of you popped into my mind’s eye this morning. You were happily bouncing and cooing away in your bunny seat, while smiling at your (adorable) reflection in Mr. Cow. As always, I recalled every last detail with acute precision: from the the tiny crook in the lobe of your left ear, to your almost-but-not-quite-off-centered smile, down to the way your arm involuntarily pumped into the air. Your half-excited, half-serious voice echoed in my ears and straight through my bones.

It didn’t take long before I began negotiating, with no one in particular, for a deal they couldn’t refuse. Bring you back to me. I pledged anything – everything, in exchange for you in my arms. My desperate negotiation ended the same way it always does; with the harsh realization that no matter how grandiose or lavish my ante: it will never be enough. You aren’t ever coming back.

Should anyone still find validity in the age-old, psychological Stages of Grief, your Momma must be stuck smack dab in the middle of the ‘Barging’ stage. If you ask me, there is simply nothing universal about the time or way in which a person grieves. Suggesting that a prescribed way to mourn the death of your only child exists, is as insulting as it is ridiculous. In fact, I am quite certain it makes perfectly good sense that I find myself attempting to strike a deal with the universe to let me have the love of my life back in my arms.

Without a doubt, and without pause, I swear on all things good and pure, I would give anything…everything, to have you back again.

I believe it’s just about time for your afternoon nap. Allow the rain falling from the sky wash away any tears you’ve cried today. Let the lyrics of your afternoon lullaby line your soul; I mean every last word. Fade into a peaceful slumber. I will be right here when you awake. I will be here forever thereafter, too.

I miss you. I love you. I hope you catch the kisses I throw into the sky for you.

xoox,

Momma

P.S. Today is April 26th. You’d be 26 months old today. I am so sorry.

 

 

BC. AC. FuC. And Uncle Dave sings Baby Blue for you. (Don’t tell Auntie Kupa.)

Paxton,

When I lost you, I lost so very many things: my only child, my chance to mother you; all the things you were and would have been; our little family; my future; my place and identity; my confidence; my naïveté; my view of the world as a safe and just place.

I can easily say my life is now divided into two distinct parts: Before Cancer (BC) and After Cancer (AC). In addition to mourning the loss of you: my dream come true – I’ve also mourned over the version of me I lost when you died. Some days, I long to have her back. Not as often, or remotely as desperately, as I long to have you back. Yet she is gone. You are gone. I am here: living in my AC world. Without you. And without the Danna I knew for 38 years.

Most days, however, I would not trade in the new version of me. (Other than if to have our entire BC world back…the one where you never got sick, you never suffered, and we never kissed good-bye one.last.time.) Given no choice in the matter, I have morphed into a different woman. Naturally, there are parts of me which are still broken and empty. Some are broken beyond repair. How couldn’t they be? When a parent loses a child, they lose a part of themselves. Beyond that, they are permanently rocked to the very core of their soul. The only way around this truth – is if they simply do not have a soul. However, there are also pieces of me which are far wiser, stronger, and more refined than that of my former self. All of which can be attributed to the fact that particles of you flow throughout my body and are contained within my soul.

Perhaps my former self needed to lose her naiveté, her blind trust, and her belief that those she loved would never betray her. She needed to become strong – in a entirely different capacity: one which allowed her the strength to see the world as it is, not how she willed it to be. She needed to acknowledge that the most difficult times do, in fact, reveal people’s true character – and she had to accept all which was unveiled. She needed to learn, the really hard fucking way, to always trust her god damn instincts.

Though few and far between, there are times where if I quiet my mind long enough, I vividly see the gifts you’ve left for me. Despite the depth and breath of the pain I experience from having lost you, I see reminders all around that I, too, have gained. Not enough. Not nearly enough gain for the hefty, immeasurable price of losing you. Still, you must always know that you alone are a far, far more profound gift than the torture and the despair of living in my new world without you.

My AC world is mournful and tenuous at times. Yet it is also beautiful, meaningful and sublime in a way I never imagined. Gibran describes it best when he prophesied that only after having really “…looked into the eyes of such sorrow” can one find their way to pure joy. For the infinite joy you have brought into my life, and the promise you continue to bring…I remain humbly and infinitely indebted.

It should come as no surprise, Dave has a little diddy for you, Diddy. Allow him to serenade you into a peaceful slumber tonight. Rest your head against my chest. Close those baby blues…Momma is right here.

Thank you for helping your Momma become a better, stronger, wiser woman. 

Stay with me, Sweet Boy.

xoox,

Momma

Bolt up! And, Notorious Big may have let you hear swear words.

Paxton,

Remember many months ago when Momma told you I was working on having something extra special occur in your honor? Well, today is the BIG DAY! With big help from one very little woman (with a heart of GOLD), I was successful in making this notion a reality. Surprise! The San Diego Chargers readily and graciously accepted my challenge to lead “charge” against childhood cancer. Today these giant men, with even larger hearts, will give a roaring, thundering voice to thousands of Little Warriors across the land. Today the Chargers will make an unprecedented move as they generate awareness of childhood cancer throughout the NFL.

The Chargers will run a full-page ad in the Chargers’ “Tailgate Times” featuring the Paxton Andrews Foundation. Throughout the game, messages relaying the chilling facts about childhood cancer will play on the jumbotron at Qualcomm Stadium. Slides highlighting the Paxton Andrews Foundation will roll on monitors around the stadium for the entirety of the game. Best of all, the Chargers will name you, Paxton Bowe Andrews, their Honored Hero for today’s game against the Dallas Cowboys.

When the Chargers heard about your beautiful soul and your brave fight, they wanted to help in any way possible. They asked what I most wanted. As always, I said, “awareness”. Yet, I never anticipated their support would be this grand. Though I am not sure why I ever underestimate what can happen when you are involved. Your spirit is so bold and bright, not even an entire NFL organization can help but to fall hopelessly in love with you. The Chargers are a great organization; clearly owned by even greater people. My appreciation is well beyond what even a million words could express.

San Diego Chargers

Incidentally, while I was running at the gym this morning “Going Back to Cali” came on my XM radio channel. Hearing Notorious BIG always makes my insides smile. But given the stir currently going down in Cali over you, I couldn’t help but think you and Biggie worked together to send me that one. (I’d prefer if Biggie would shelter you from his oft vulgar mouth. But, I’m hopeful he gave you ear muffs during the extra-naughty parts.) Sensing you all around me, and with Biggie lacing his lyrically genius beats throughout my soul, I ran faster and farther – and felt stronger – than I have in years. The only thing missing was hydraulics on my treadmill…and of course, you.

I am so very proud of you, Diddy. Enjoy the game. Bolt up!

Stay with me, Sweet Boy.

xoox

Momma

19 months. today wasn’t gonna be easy…then cancer came back.

Diddy,

Today began much like everyday. I got out of bed, walked down to your room, and began our morning ritual. I whispered the many hopes and dreams I have for you: some old, some new. Each at the forefront of my mind as I face the dawn of yet another day without you. I told you how much I loved and missed you, and explained yet again how I wished a million times over that we could trade places. I shared many other secrets in the spaces in between. All the while searching and scanning the world on the other side of your bedroom window – – just in case today would be the day you’re outside waiting for me to come and rescue you. Then I ambled into the shower, got myself presentable, and set out into the ‘real’ world. (Also known as my ‘fake’ world.) Though I don’t recall the commute, I arrived at BCHS: parked in the spot reserved for me 13-ish years ago, entered the set of doors I’ve pulled on a million times over, navigated the hallways in which I’ve surely worn a pathway, entered my classroom, switched on the lights, landed safely at my desk…and was met by your beautiful face smiling right at me. Then, I exhaled.

I have become very adept at eluding eye contact with the 1300 students which fill the hallways at any given time throughout the school day. I avoid looking too deeply into the eyes of babes who, despite their individual stories and struggles, do not know anything about the dark, grim, gruesome world in which I live. Part of my avoidance comes from sparing myself from the pang which stings my soul when the realization strikes that you will never be in 9th, 10th, 11th or 12th grade, worried about a test, excited about a girl, donned to the nines for prom, decorated as a stud player on the basketball team…the list goes on. The other half, is sparing the kids who should they look too closely into my eyes, will surely end up getting sick and dying. But mostly my avoidance stems from the fact that I know I live in a parallel universe. I realize that no one in that building could ever come close to understanding the aforementioned – let alone a teenage kid. None of those teenagers: with the exception of two, little, lovely Lancers.

I met the older of the lovelies three years ago when she was a freshman. She is a spicy monkey. Spicy enough to be one of my students. Spicy enough to run hurdles to boot. It was during track season that I got to know her best. At the time, I was going through IVF treatments to conceive you. She and her family were rallying around her little brother who was in the final weeks of his victorious battle with brain cancer: medulloblastoma. He endured and triumphed over 56 rounds of chemo and 28 rounds of radiation. I remember the day she brought celebratory bracelets into a team meeting. The night before, her brother “rang the bell” at CHW. (At the time, I had no idea how intimate I’d become with the notion of one day watching you reach up to tug the string on that same bell.) I recall silently sobbing in the coaches’ office as I watched the video she made of her little warrior brother ringing the bell. My tears were those of sheer joy…the sobs I blamed on the assortment of drugs surging throughout my body. In retrospect, I wonder if the world was silently trying to prepare me for matters of which I wouldn’t have understood, nor heeded, had they been emblazoned in neon, flashing lights.

Today one of my closest BCHS friends, who apparently pulled the short straw, sat me down and delivered a brutal message. The little warrior boy, who rang a bell over three years ago, just received the crushing news that his cancer is back. His cancer is back in the same spot as the original tumor…at the base of his brain. His cancer is fucking back. How is this even possible?

One of my new-world survival techniques is compartmentalization. In fact, it is the single most effective tool in my arsenal. I simply cannot allow my real world to overlap with my fake world. That being said, I don’t do “cancer-talk”, “Paxton-talk”, “personal-life talk” while I’m anywhere other than at home. On top of the collision of my two worlds, the nature of this news shoved me right down my ‘isolate to survive’ rabbit hole. The net result left me paralyzed. As tears began to push against the backs of my eyes, and vomit started to creep up my throat, I merely uttered, “This is not good. This really is not good.” Bless her heart and soul, my sweet friend gently replied, “I’m sorry, Danna. I am so sorry.” And the exchange of those two sentences continued on a loop, until I walked away…and “deep six-ed” into my rabbit hole.

Many hours later, and in the safety of my own space, I called my friend. I asked her to make sure this family knew that I will do anything I can to help them – anything at all. I am fully and wholly committed to their every last need. No matter what it is, when they need it…I am here. The offer stands infinitely. She promised she would make sure they knew. And she did.

I couldn’t allow my commitment to this little warrior boy to be my ‘something different’ on the 12th of this month. I forced myself to do something else. It ended up being horse-shit because my heart, which is smashed into 12 billion pieces, couldn’t muster up anything meaningful. Plus it was hella late in the night. For that, I apologize. For committing every last resource I personally have and that your Foundation has generated to this brave and beautiful boy, I do not.

I still have a hard time wrapping my head around my reality, which I know is also the reality for so many other parents across the land who have lost a child. It’s a reality you never get to escape from or take a break from. It’s a reality that is tremendous and cumbersome to carry around – and the load never gets any lighter. But, I don’t ever want my reality to be another parent’s reality. One blonde haired, blue-eyed boy is one too many. How many more need to be spared? What do I need to do to stop cancer from stealing another child?

Please help this little warrior boy. Please help Dr. Jogal, Dr. Firat, Nurse Renee and the other all-too familiar cast of characters at CHW who compose his Dream Team find a way for him to (once again) defy the gruesome odds. Please help him find his inner-warrior strength and reign triumphant over medulloblastoma, a PNET sarcoma, which has yet again declared war inside his sweet, innocent body.

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I miss you each and every day, I truly do. But today I’d especially have done anything to have been able to rush home, scoop you into my arms, and plant a kiss atop of your innocent, beautiful head…as I thanked the angels everywhere for letting you be born healthy and happy.

I am so very sorry you got sick. I will never, ever stop asking why. I will never, ever stop fighting either.

Stay with me, sweet boy. Stay with the little warrior boy too.

xoox,

Momma

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

Diddy,

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

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

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

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

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

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

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

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

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

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

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

Stay with me, sweet boy.

xoox,

Momma

She’s got a way….each and everyone of them.

Hi Sweet Diddy,

I arrived at Britta’s yesterday morning. I can’t remember a time I’ve ever been more relieved to be with one of my most special lovelies. Britta moved to Northern California almost one year ago. In fact, her move – her new job – her trip to India – were all delayed because she stayed in Milwaukee to be by my side after July 2nd happened. Despite all the new wave, unspoken expectations which come with the territory of a woman determined to climb her way to the top of a male-dominated business world – Britta adamantly refused to allow the pressures of a new, big time, high-profile job to call her back to California. In hindsight, Britta’s commitment to us, when we needed her most, is not unusual at all. Her priorities have always been family and friends. Her heart is as giant as it is genuine. So, Britta stayed. She stayed and helped Lala make a slide show and a playlist for your memorial late into the night. She took me, in a catatonic state, and held my hand as I ambled through Mayfair to find a dress for your memorial. (I didn’t end up wearing the one we got that stupid day, because the “most perfect one ever” arrived moments before the very last second. But only after first being trapped in the Colorado hellfire’s. Despite my zombie-like state, irony of such nature was not even lost on me.) The morning of your memorial, Britta came to our house. She sat me in our downstairs bathroom and did my make up and then my hair. When it didn’t seem possible she could do more, Britta executed the greatest challenge of all time. She readily agreed to read the letter I wrote you at your memorial. And, she did so bravely and beautifully…just like you.

In the past year, Britta has taken yet ANOTHER big, fancy, baller, shot-caller job – and moved again. One day, this girl will run the world; or marry Luda and have babies a plenty. Whichever she decides on first. Needless to say, I haven’t had the energy or the courage to make the trip out here sooner. She & I decided it was imperative, however, that I work in a pit stop while on my nation-wide tour for peace. In the planning, we realized this summer marked 20 years of being friends. (Yeph. Britta is old, huh?!?) As you know, Britta inherently possesses the synergy to generate fun wherever she goes. With the realization of our 20 year anniversary added to the mix, I have a feeling this visit is about to be ah-mazing. Britta has plans galore in the works. All of which I’m sure will prove to be a mother load of fun. And I will do my very best to allow the “happy” to seep through. But as you know, sometimes I get so tired and so sad – I feel happiest just sitting quietly in the company of someone with whom I feel safe (i.e. Britta).

I haven’t seen much of the city yet. But I can say with confidence it’s hands-down my favorite of the four places she’s lived since she moved to California five years ago. Upon my arrival, I was met with a package which was delivered to Britta’s house. It was waiting for me on my bed. (Fresh flowers and bottled water were also at my bedside.) I digress. I was mystified because in my grief-stricken + heart-broken haze, I didn’t even know her address – much less figure anyone else would. For some reason, I wasn’t surprised to find the package was from Grace. Knowing my plan to arrive at Britta’s on July 3rd, Grace contacted Britta and arranged for a special delivery. Along with a beautiful card, which I will keep forever and ever, was a “July 2nd shouldn’t be July 2nd” gift: healing-bead bracelets…giraffe patterned, with an angel wing charm to boot. I love the bracelets. I love Grace too.

I love all my special lovelies, Paxton. I’ve always said I have the very best friends on all the planet. But, the past year has proven this to be less of an opinion and more an undeniable fact. Without my most special lovelies, I would not have made it through July 2nd. I would not have made it through May 8th….or February – all of fucking fuck February. I would not have made it through March, April, May or June either. I wouldn’t have made it through many dark days and endless, terrifying nights in the confines of the last year.

Maybe each of my girls was strategically placed into Momma’s life along the way? Perhaps someone far, far wiser than I has know all along that there would come a time when I ‘d simply be unable to push through one more day without the borrowed strength and bestowed grace of these brave souls? Not one time, did the love and support of these girls waiver. In fact, they did not as much flinch.

Paxton, Momma’s girls share a sisterhood so sacred it is almost unspeakable. They know what I need, and what I don’t need, without me having to say a single word. These girls are the truest form of unconditional love. This is why after the shit storm of my life, I still feel lucky and blessed. So very blessed. Was it is you who placed each of these girls in my life’s path? After all, our souls have known each other before this life….and we will know each other long after this life. Isn’t that right? Yes. In fact, as I write this it makes perfect sense; it was you. Thank you so much. I don’t know what I would do without each and every one of them.

Most of all, thank you for being my son.

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Here is your lullaby for tonight. It will forever remind me of the special lovelies you’ve sent me along the way.

Sweet dreams, My-My.

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

Stay with me, Sweet Boy.

xoox,

Momma