songs. signs. and a very silent storm.

Paxton Bowe,

Yesterday, I spent the better part of the morning driving through the city, soaking in the beauty of newfound surroundings, getting lost and then getting found. Normally, the times I was lost would have frustrated me and (inadvertently) lead me to swear at idiots who cut in front of me, and whip-off even bigger idiots who insisted on driving slow in the left lane. (Right after conquering cancer, I’m coming after slow-left-lane drivers.) However, you and your Busha keep me both comforted and amused. Calmed into in a blissful haze, I continued to explore. In the confines of four hours, on several different radio stations, I heard: “Somewhere Over the Rainbow”, “What a Wonderful World”, “Brown Eyed Girl”, and “Yellow”. Each time another song came on I called your Lala. With each call, she broke into her trademark, barely audible giggle. Through a tear-crackled voice she’d proudly proclaim, “He’s such a good boy, DD.” Yes. Yes, you are Diddy.

Knowing Lala was in the loop, you made sure to include her in the fun. Just when I thought you were done for the day, Lala called to tell me “Brown Eyed Girl” just came on the radio in her car all the way over in Milwaukee!

However, the most profound “musical moment” happened as I was finishing up my evening run. A song titled, “Storm”, by Lifehouse came onto my iPhone. I don’t know how it popped into my queue; I am certain I’ve never heard it before. In fact, I really don’t recall ever adding any songs by Lifehouse onto my iTunes. As the lyrics played, the world around me came to a standstill: my body paralyzed: my insides numb. The only thing that seemed to have any movement were the chills that rose to the surface of my skin, and the tears that streamed down my face.

You sent me a perfect compilation of songs, baby love.  Now that I know music is  one way you tell me you are with me, the melodies filled my broken heart with remnants of you. Like most things which involve having to parent you from so far away, receiving the songs made Momma equal parts happy and sad. Happy you are sending me signs, even more happy you are with me. Sad because you shouldn’t have to ‘send me signs’ to let me know you’re near. You should amble over to me, outstretch your little arms, and hop right up into my lap. Nonetheless, I enjoyed our day filled with secret messages. I think I smiled more during that four hour excursion than I have in the last four days combined. However, the song by Lifehouse has rested heavy inside of my heart. How it got on my iPod and came into rotation – on all days – seemed too serendipitous to be merely a coincidence. I believe it was to provide me with a vehicle to reciprocate your beautiful efforts, and send you a song.

If art were ever to imitate life, mine is reflected most perfectly by this song. Much like having you, and subsequently losing you – this song is one of the most painfully beautiful things I’ve ever heard.

This is your lullaby tonight. May the lyrics fill your heart with reassurance that there is nothing I would rather do than be exactly where you are. Nothing I rather have than you wrapped in my arms. Nothing I would rather hear than your squeaky voice. Nothing I would rather see than your adorable face. Close those baby blues and fade into a peaceful slumber – Momma is right here.

I miss you. I love you. Sleep tight.

Stay with me, Sweet Boy.

xoox

Momma

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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

two precious, miracle, blue-eyed boys…together forever.

Sweet Boy,

Tonight I am short on words, but not on tears.

When Bradan’s Daddy contacted me with the news of his baby boy’s passing, I was instantaneously transported back to July. I remember those days with such pristine precision, it seems as if it were yesterday: the suffocating grief, the overwhelming fear, and the pure and unrelenting love…which was all around. At the same time, given how drastically life has changed since you left, July feels like it must have been a million years ago.

Upon Bradan’s arrival, I see you reaching out for his hand. I imagine you holding it tightly and assuring him that he need not be afraid. I believe this because even in the ‘highest layer’, I know you are the bravest litte warrior – with the kindest heart, and most inviting smile.

Both of you precious, miracle, baby boys – with eyes as blue as the sky – belong here with your Mommas and Daddies. I have no doubt every angel would agree that children are meant to outlive their parents. Period. Because we cannot be together, I need you to remember this part of our forever-and-ever-pact: hold onto your angel (the one with the biggest wings) until Momma comes for you. Hold onto Bradan and to the other boys and girls who cross your path too. Most of all, please hold onto my love. And always, always know that you are not alone.

Close your beautiful blue eyes and sleep peacefully tonight, my love; Momma is right here.

I love you. I miss 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

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

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

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

Oh heart! Oh heart! Mine to Yours…

This is the most difficult thank you letter I will ever write. No matter how long I reflect, how often I rewrite, how many times I revise – words can only fall short. I will never be able to adequately express my profound gratitude for the unwavering support that has been bestowed upon us. I remain humbly grateful, and infinitely indebted, for the outpouring of love and innumerable acts of humanity we have received.

After hearing the stunning news of Paxton’s diagnosis – countless members of our community swiftly & readily enlisted in what would soon be quipped, Paxton’s “Army of Love”. Among them – a vast array of: family, friends, co-workers, former classmates, clients, students, doctors, nurses, pastors, “friends of friends”, and complete strangers. Although they did not know one another, a common thread instantly tethered them: the desire to fight cancer alongside our precious, Peaceful Warrior. They joined hands, stood hip to hip, and formed a frontline. Without uttering a single word they confidently proclaimed, “We are ready.”

Our new reality rendered us disoriented from a haze of limitless fear, suffocated by unparalleled anguish, and immobilized in unprecedented grief. However, we remained keenly aware that a steady current of love was enveloping around us. We received cards, text messages, emails, phone calls offering love and support throughout each day, and every night. We were given notes, written on scraps of paper and left at the front desk of Children’s Hospital, when visitation could not be granted. An online calendar was made, shared, and monitored to ensure we had a dinner each evening. Multiple gift cards, goodie bags, groceries, and home good supplies were purchased. While inpatient, home repair projects were finished, yard work done, our home cleaned, laundry washed & folded. Children across Wisconsin had lemonade stands and proudly gifted their proceeds. A freezer chest magically appeared in our garage to provide a place to store the compiling dinners. Blessed blankets, stuffed animals, “snap-in-front” outfits, children’s books, and a necklace with a charm containing a picture of my sweet baby arrived. Numerous donations to Paxton’s Angel Network were made; personal checks written and sent. Several fundraisers, a silent auction, and an honorary blood drive were held. Wristbands were created, purchased, and donned. Dearly committed family members shared shifts through frightening, heart wrenching, sleepless nights. Endless trips between our home and the hospital were made to gather forgotten items…and then made again. Sick leaves were drained. Vacation days were used. Mileage was compiled. Our adored dog, Lucas, was lovingly adopted – whether we rushed off to the ER – in the middle of the day, the middle of the night – or the middle of a sentence. Or when we embarked on what would become an 18-night / 19-day solitude in the HOT Unit.  A beautiful song, “Learn to Fly”, was written & recorded. Prayer chains were started. Candles, at congregations around the globe, were lit. Individual prayers – in homes across the land – were said…every single night. My nephews and niece were gladly “taken in” as to grant my devoted sister some undistracted time with her beloved nephew. Yellow fast became everyone’s new favorite color. Angels were compiled – a statue, garden ornament, figurines, pins, and coins. Assistance with sorting through, interpreting, and tracking endless medical statements was provided. Heartwarming landscaping met us on our front lawn. All of it made a difference. Every. Single. Thing. No one deed superseded another – for, it was the ‘whole’ that afforded us the most priceless gift. The abundant selflessness at play allowed us to focus every second of the day, every ounce of emotional energy, where it was most needed…most deserved: on our sweet Paxton.

I remain completely and wholly devastated by the loss of my precious baby boy. In losing Paxton, I have lost my only child, my miracle baby, my beloved, perfect, beautiful son; I have lost my yesterday, my today, my tomorrow…my entire future. For now, it is impossible to separate the grief of losing Paxton – from the love of having Paxton. Grief and love: the two most powerful, yet paradoxical, emotions – have declared war in my soul.

I will walk this dark walk. It is sure to be the darkest walk of my life. But I will not stop searching for light. When I need it most, I sincerely believe Paxton will provide that light. I will see the life-spark of his contagious smile reflecting in your eyes. I will feel the peacefulness of his tender soul through your warm embrace. I will hear the gentleness of his beautiful heart as you speak his name – and speak it again. I will sense the courage of his brave spirit from the march of your “Army of Love”. I will continue to look for my Sweet Boy, and I will find his light all around.

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With endless appreciation, immeasurable gratitude, extraordinary love –
xoox,
Danna ~ Paxton’s proud Momma