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

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.

1349517769310646

Stay with me, sweet boy.
xoox,
Momma

This Little Light of Mine…

The first song I sang to you was This Little Light of Mine. Very late in the night of February 12th the instrumental version began to play through the Pandora station I had streaming on our iPad. As the rest of the world seemingly slept, we snuggled as close to each other as we possibly could, and stole a piece of the night. I held you against my chest and rested my lips gently on your perfect head. I could not believe I was actually a mom…I was really holding onto my very own son. In efforts to convince myself I was not lost amid a dream, I began an internal chant: “He is real.” “He is real.” “He is real.” My tears fell softly atop your precious head as we exchanged some of our first secrets. The background music prompted me to tell you some of the thousands of things I eventually wanted you to know, including: …”I will never let anyone or anything put your light out, baby. I will do my very best to ensure you grow to be proud, confident, independent and strong – so your light shines bold and bright. I will love you so hard, and so unconditionally, that no matter where you roam or how far you go – your light will always guide you back home.”

Friends…Family…Beloved ones, please help Paxton’s light shine for all the world to see. More importantly, let Paxton know we see his light, and that it – indeed – shines on.

This Sunday, December 9th, from 7:00 p.m. – 8:00 p.m., The Compassionate Friends support group has organized a Worldwide Candle Lighting ceremony. Now believed to be the largest mass candle lighting on the globe, the ceremony unites family and friends to honor children who have passed away, at any age, from any cause. A virtual 24-hour wave of light will move from time zone to time zone across the globe. At 7 p.m., local time, hundreds of formal candle lighting events will be held, and thousands of informal candle lightings will be conducted in homes. Families near and far will join in quiet remembrance of their child(ren) who were taken too soon.

Watch for the light, sweet Paxton. Know you are loved; you are missed; you are remembered…and, most of all sweet baby, you are never alone. I hope you are safe.

PaxHeartBalloons

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.

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