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Childhood Tender Topics

A Flourishing Life (Pediatric Cancer Awareness)

In the line that meandered through the displays of deep velvets and the sparkle of sequins sown to necklines, through tables piled with holiday décor now a little less festive with Christmas past, I stood, hands full.  Turning the items this way and that, considering, shifting my weight from one foot to another, wondering if I really needed this cheery garland now half off, or the ornament and the sweater meant to be paired with a party dress.  But such great deals, hard to resist.

At some point I looked up, my eyes swept the scene before me and the frenzy of the after-Christmas sale seemed to hush.  Had I not been here before?  Had I not been here hundreds of times before?  My favorite store, compelling not just for what one could purchase, but also for the experience of it, just the sheer delight of walking into its beautiful midst.  Colors and textures, patterns and light all satiating just a bit of my hunger for beauty.  Somehow the unspoken draw that this place could help me set the world a little right, enable me to carve out a space restful and fair.

My heart startled, a gag constricting my throat, an unconscious shake of the head, trying to clear the bafflement, the tilting sense of disorientation.  The contrast suddenly slicing, a rogue waving knocking me off axis.  How?  How can these two worlds lay side by side?  No more than a mile up the road dwells a place I had known about for years, but never before known. The Children’s Hospital sat on a hill on the way to my friend’s house, on the way to a lovely park along the lake, to a plant nursery I liked to peruse.  It was a landmark I passed by, never a destination.

With mechanical motion I had responded to the doctor’s instructions: go to the Emergency Room at the Children’s Hospital, park in Lot 4, she needs a transfusion immediately.  We met there, we four, my husband and two little girls, quiet, tears brimming when my eyes met his, not knowing what dark thread had just pierced our lives.  “Does she have access?” the nurse asked.  “What?” my mind fumbled trying to make sense of her question.  Seeing my confused look she blurted, “Does she have cancer?” “What? NO!” I exclaimed, simultaneously thinking it an absurd idea and sinking terror cutting into my heart, wondering if such a thing could possibly be true.

Now the sight of bald heads and feeding tubes taped to cheeks, commonplace, though still jarring.  One evening in the hospital I rounded the corner, horror sweeping me, heat up the back of my neck, a mom and dad, one pushing the stroller, the other the IV pole with the bag holding some garish red fluid, bright yellow of the Hazardous Drug sticker draped across.  My eyes followed the line from IV pole down to a wee baby.

“What is this place?” I wanted to scream.  Every instinct in me demanded I run, flee, be rid of this terror, get away, get out, don’t look back.  What parent purposefully allows poison to seep into the veins of their child, allows the perfect soft flesh of their child’s chest to be punctured with a port, with a double-lumen Hickman catheter, with access?  We were told that a beast we could not perceive with our eyes was threatening to eat away the lives of our children.  So time after time we signed consent, we nodded our heads and said yes to horrors our child must bear, while we could only look on, desperate for some means of transaction that would allow us to take away this burden and heap it upon ourselves.

It would merely be the first of many holidays spent locked away behind those doors.   The whole earth ebbing and flowing, moving through one season into another, anticipation and preparation for countless occasions, birthday parties and Thanksgiving turkeys, spring break and family camping trips.  And we, in an eddy, an endless cycle of blood draws and labs, rounds of chemo and scans, languishing while all the world continues on unblinking, we the unseen.

But my heart can never un-see what it has witnessed.  I will never look at the windows of that building the same.  Just mere glass reflecting sunlight, glowing with the coming of night, behind which are lives engaged in incomprehensible battles, hopes strained so taut, wailing for a child gone still.

I still love to go to Anthropologie to run my hands along the rich texture of a beautiful sweater and take in the sight of a new arrangement of glasses in colorful array.  But it is bittersweet.  The barb drags sharp across my tender scarred flesh, a wan smile on my lips remembering how she loved to methodically smell each lotion and perfume, blue eyes glancing up at me bright with the questioning, could she try just this one?

The entirety of her life only spanned six years.  From the first moment I heard the word “leukemia,” linked with my 21-month old girl, I could sense the possibility of death ever standing in the periphery, its shadow ever threatening.  I remembered the words of a mother whose son had autism; she had to learn to dream different dreams for her child.  From her first two-year-old tantrum there in the hallway of the Oncology Unit, as she stood stalwart, cheeks flushed, determined not to put away the little bike she had just been riding, I knew I had a choice.  This was not the life I would have ever chosen for my child, but this was the life she had been handed and we were going to do everything we could to make it a life of flourishing, a life expectant.

I chose to treat her as a child with a future, to hold the line and set limits when it was so tempting to relent, to give into her demands, feeling sorry for this little bald headed girl with the lines looping out her shirt up to the IV pole.  I crafted a schedule right smack in the middle of that strange hospital life.  She dressed in happy bright outfits rather than succumbing to endless pajamas; a declaration that she would not be defined by sickness.  We danced to music and painted glitter on nails, she wore tutus and crowns, little plastic vampire teeth and a sparkling cape or butterfly wings as she sped through the halls on her bike, I careening along in tow, desperate to keep the IV pole upright.

Though her life was cut brutally short, hers was a life brimming with joy and giddy delight.  She learned to do the hard things: the pierce of another needle puncturing her skin, countless icky medicines throughout the day, to lie ever so still as her body passed through the CT machine.  She was a girl who loved to laugh, made fast friends with all the staff, would color anything a hundred colors of the rainbow.  In her last days, as she was home on hospice, she named herself “Sapphire Rainbow Sparkle Jewel.”  I can think of no better name to perfectly sum her up.  By God’s profound grace, my sweet girl’s life was not marked primarily by suffering, rather, by a flourishing within it.

 

In honor of Childhood Cancer Awareness Month, we would like to highlight the following organizations that Jai Anderson supports:

 

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Jai Anderson is the mother of two girls and is recently divorced following the death of her younger daughter to cancer in 2016.  She is banking on God’s promise of the redemption of all her sorrows and harkening God’s call to be expectant, to be on the lookout for the abundance He will bring.  It is her joy as a social worker to support families in parenting and individuals through counseling in a small town in Montana. She blogs at www.ConglomerationofJoy.com

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