Tag Archives: pediatric cancer

Facets of Broken

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I sat in the chair across the small room from this young man I have begun to know, a man who lives much of life in retreat, in self-shelter, and who was speaking of his immense fear.  As I have been granted entrance, each footstep is placed with care as I walk into the space of sacred ground, of places tender and vulnerable.  Here, where I have been allowed in to catch a glimpse behind the veil of one beating heart, of one life…flashes of beauty, wells of dark, flutters of fear, and wounds.  Wounds upon wounds.  Wounds echoing in life after life.  Wounds of loss, of abandonment, of rejection, of being cast off, of not being counted worth it.

We talk of fears, of “what ifs?”  What if you went another way?  What if you looked down at those two rutted out tracks you’ve traveled a hundred thousand times and decided this time, this time you will go another way?  Inertia would be of essence, that force to get up and out and travel a new path.  What if there were a way to see your fear before you, to look it in the eye, to walk forward and through?  What if this time you didn’t try to run away, to deflect, to distract, to drug the senses so you just don’t have to feel?

“So conquer my fear?” he ventures.  He describes a decimation, an assault, a radical diminishing of power of that fear, a destruction, an attempt to remove, crush and do away with the fear.  This word conquer doesn’t feel quite right, for what do we do with fears that are as real as anything we know? Not fears simply imagined, or fears exaggerated and inflated, but fears real and concrete?  What if that fear should be full of power and might and tower before you?  There are whole spectrums and realms of fears, but what of those fears that in their terror actually reflect things of immense value?  We wrestle with our thoughts, with our words, turning them over this way and that, trying to get a gauge on them, trying to make out our approach to these unwieldy monoliths.

I have a handful of fears.  No, no really far, far more, but of the whole bunch there are some whose dark shadows cast the most terror.  Fears whose fruition can never be undone, whose aftershocks quake endlessly underfoot.  Despite all my might, the entirety of my intellect, all the great force of my will, despite the swell of my fierce love, I have known the fulfillment of two of my greatest fears.  There seems to be no motion in the thousands of moments in each of my days, that I do not feel the barbs dragging sharp across the tender raw flesh of my heart.  There is no getting away from these vast sorrows who penetrate and saturate nearly every action, every thought, every time of day, every place and interaction.  Sometimes I am engulfed, find myself swamped, going down, going under, the flailing and fight to stay with my mouth straining for air above the waves.  And sometimes the quiet longing of no more, just be done, just gone.

When the last wave of devastation finally came for Job, he sat in silence with his friends for seven long days, unable to speak, no words remotely sufficient to even begin to form some perimeter to define the loss, to take stock of what was left.  Just silence, just mouth gaping, just horrified awe and a terrible lack.  Over a year has passed and still my jaw lies slack.  Little fits of words, a cluster of sentences here and there. How to begin?  Where?  The questions too numerous, too vast, so daunting.  The ravaging of the storm so great that seemingly little remains, even the scaffolding torn, ripped up from its footings.  Questions as big as the vast blue Montana sky, no equation to measure the diameter, much less the means to traverse.

But there was a prologue to the woes that would come, nearly a year of stirrings, of invisible and radical rearrangement.  Months of wrestling that would eventually flow into these day: On Labor Day weekend of 2011, after a long evening at a friend’s house, like some broiling infection desperate for the lancing, my husband finally let loose with the reality that he was no longer a Christian, no longer a believer in God.  I found myself going down, down into the vast darkness of a crevasse of the unknown, of uncertainty, of radical sorrow, of assailing questions.  We were only days away from going to Hawaii in celebration of our 10 year anniversary.  I had no idea how to celebrate, no idea how to orient myself to this fundamental shift of trajectory, one that had been shared, been a binding between us, now severed.  The next wave brought buoyant hope that we would at long last be able to move to Montana with the offer of a great job in Bozeman.  And that wave came crashing down, slamming our limbs into the rocks the very next morning on December 1st, 2011, when the word “leukemia,” was first uttered in conjunction with our little beloved Allistaire, then only 21 months old.

But before all this, in that year that preceded, I think the Lord began to make evident His answer to my prayer, prayed in times past.  After what felt like years of stagnation, I told the Lord one New Year’s Eve, “I want to grow.  I want to be like those plants whose leaves are dark and sturdy with age but who also have those tender, delicate, bright green leaves of new growth.”  I could never have imagined what growth would look like, what growth would require, what radical pruning would be necessary.  I had no idea that what growth I really needed went down to the root.

The wrestling of that near year is summed up by my rage and fury that I was finite, that I could not seem to change myself nor my circumstances and that God wasn’t fulfilling what I thought was His end of this being a Christian bargain.  The deal goes something like this: I’m jacked up so You/God will fix me, make me all better and pretty and nice and I go on my way, and while you’re at it, cause You’re all-powerful and all, make my life look like I want it, what I deem as “good.” I sort of got that I was finite and that I needed God since He’s a whole lot bigger and stuff, but the part I didn’t get, the part where God absolutely cut me at my knees and knocked me to the ground was this: that my need for God was of far vaster proportions than I could have ever guessed nor ever wanted to accept and God gets to decide, God gets to determine what is good and I don’t get to boss Him around to do my bidding.  He is God and on one spring day in 2011, I fell to my face in radical submission to Him, to His will and to His declaration of what is good and what my life should look like.  And by the way, I had thought I was okay with needing God, but what I discovered was that I was not at all okay being utterly dependent on Him; that thought was revolting to my finite, western American, 21st Century mind.  But flat on my face before God, I think I had my first real glimpse of His utter “otherness,” His holiness, His Godhood.  It was my first real taste of the “fear of The Lord.”

I had no idea what was coming, nor how much would be stripped away from me.  But in God’s gentle and profound grace to me, He had already brought about a radical transformation in my heart in which I had begun to find delight, goodness and life in the yielding to Him, in the saying “Yes, You are God and You get to choose.” As I look back over the long treacherous road stretching out behind me, I can see how over and over, He went before me.  He cashed provision for me around the bend, long before I could see the “how” of His care.

I stood on the shore of that California beach with Matt, tall and lanky, giving me instructions on how to make my way into the ocean.  “You swim through the waves,” he told me.  Determined I strode forward and attempted to re-enact in my body the words he had offered.  Before I knew it, I had been slammed down with the force of the wave, body twisting in the churning water, a sense of desperation to get my footing, a gasp of air and another wave knocking me back down.  Wave after wave hit, never enough time or sense of direction to get myself upright before the next one came.  Eventually I sat exhausted, spent, shaking in the sand.

It has been five and a half years, wave after relentless wave crashing down, scouring grit and sand against my skin, being beaten against the rocks, ceaseless gasping for air, the sensation of going down, being sucked under now common place.  Disorientation, baffled, bewilderment, mouth gaping, eyes wide with terror, utter exhaustion, and tears burning, salt stinging in ragged cuts, abrasions.  Wounds upon wounds.  I am still here, though sometimes I’d desperately like not to be.

At multiple points in these years, Sten declared his un-love to me, his not-love, his I no longer love you.  I have felt so desperately alone, fear thick, heavy, both hot and cold tightening around my throat.  That deeply rutted road of my mind and heart, neural pathways laid down thick ensuring speed, ensuring unwavering direction, the pulsing cells of my heart contracting in unison, a relentless chanting of FIGHT!  The structure of my brain stem oriented utterly toward not flight, not freeze but Fight!  With every fiber of my being, every exertion of my intellect, every coursing hot throb of love, with all my great might I could gather and bring to bear, I fought for Allistaire.  I held nothing back and I set everything aside with one singular aim, one white-hot center point of target, I fought for her life.

And it was not enough.

I could not determine the outcome.

It was out of my hands…out of my finite grasp.

And I have struggled and gasped and gagged trying to sit “God is good,” next to “my child is dead.”

Her foot hit the door of her bedroom as Sten carried her stiff body out of the house that dark April night, and they zipped her into the bag with the fancy fabric, and the van drove out of sight down our driveway, Solveig wailing into the darkness, I knew.  I knew it was “game on.”  One fight had come utterly to its end after so very long, after so many twists and turns, highs and lows, there was nothing left to fight for.  And rushing into that vacuum, that space left behind as she left our lives, came crushing the fight for my husband, for my marriage, for another cornerstone of my life, my identity, my place in the world.  In all those long years, “we” had to take second with the vast majority of our attention fixated on caring for Allistaire.

But it was not enough.

I could not determine the outcome.

His heart had already departed from me.

On September 5th, 2016, Sten made known there was no more “us.”  After fifteen years of marriage, his pursuit of his own happiness meant for him walking out of the threshold, of severing the hundreds of thousands of cells that had grown between us.  On May 22, 2017, our divorce was final and with his permission I took his face in my hands one last time, and with a kiss on his forehead I declared to him the great intention and longing of my heart, “I leave you with a blessing and not a curse.”

He once slammed into a tree while snowboarding.  There was forever a dent there, and indentation where the cells never grew back and filled in.  I used to like to put my hand there, to cup that place of lack, the tree unseeable but its impact never to be undone, forever seen.  There are great caverns, places hollowed out in me where once dwelt he and Allistaire, beings so precious and dear to me, flesh of my flesh.  Gone.  You look at me and you cannot see them, but their absence will never by undone, gouged out for all my days.

I remember days in the hospital with Allistaire, nights I would go to sleep crying, waking with the morning and still crying, lying there in the couch that turns into a bed, terrified to set my foot to the floor, terrified to begin the day, so well acquainted with the reality that the entire earth could tilt on its axis before day’s end.  There has been no let up, no ceasing from the striving, no option to stop, just a constant harried insistent demand that I put one foot in front of the other, a willing to move through each day.  Relief when night comes and I no longer have to live through that day.

I no longer walk through a mine field, never knowing what step might be one more reason for Sten to walk away.  I no longer walk with the high-pitched sizzle of terror saturating my blood, the fear of test results, of lab results, of flow cytometry, and PET scans, ASTs and ALTs declaring the state of the liver, of creatinin in kidneys and the ejection fraction and shortening fraction of the heart, of the sound of fluid in the lungs or the poisoning of ovaries and scraping away of IQ from radiation like Hiroshima.  My iPhone no longer auto corrects “and” to “ANC.”  Most people with whom I interact daily have never met Allistaire or Sten.  Those radical indentations, those places of lack, lie barely concealed behind my every day tasks.

Now my days are filled with 30 hours a week at Thrive as the Parent Educator and 16 hours a week as an Integrated Behavioral Health Therapist Intern at Community Health Partners, as I attempt to amass the 3,000 supervised hours required to obtain my Clinical Social Work License.  In the evenings I go home to an empty house, the cookbooks lie untouched on the shelf and there is no sound but that of the wind and birds outside.  I lost one child and have had half of the other taken away.  I live in a house and drive a car intended for four. I have been whittled down to one and a half.  For fifteen years I lived and moved in the realm of couples and families and now, now I don’t know what I am.  I have been radically ejected from the reality of families.  Nebulous, ambiguous, extraneous, that left over part of a fraction.  I am disoriented, bewildered, baffled, radically exhausted, saturated with sorrow, deeply bruised, bloodied, cheeks tear streaked.  I have become so radically sober.  I don’t know who has been left behind after all this tattering, this relentless erosion of my being.  Everything has been impacted.  The tsunami washes away in every direction, present, future, past, nothing left untouched, nothing left unchanged, everything tilted and swung off its axis.  I look back and wonder in confusion, “when did it all begin?”  I crane my neck to see all the way back, all the way to those first days and months and years with him, all the way back to my womb where cell was joining to cell and perhaps even further back than that, something went radically wrong.

If you look at me now you might be mislead to think I have not moved much.  The tenets of my faith look mostly unchanged.  I sit on that spectrum of ideology and philosophy and spirituality in just about the same spot.  What you see before you may not allow your eyes to perceive the vast distances my heart has traveled, the tender places worn down from ceaseless wrestling, the radical rearrangement of the scaffolding of my being, the sights I cannot unseen, the weeping that seems to have no end.

One thing I know amongst all the overwhelming unknown – I turn my face to God, to Jesus my Christ.

For facing my fears I have.  I have sat across another table from Sten, this time signing legal documents that end my union with him.  I have sat at a table and signed a document to have the flesh of my beloved child incinerated, reduced to ashes, now housed in a bag.  But this is not the end of facing them.  Like the mountains of my youth, those Cascades that appear to be a long line on the horizon, they extend outward behind that illusionary silhouette, how far I do not know.  There are mountains beyond mountains, endless dark valleys and valleys bright, mountains jagged and threatening calamity and mountains upon whose tops I might just see the whole wide world.  They go on and on into the distance.  I feel the darkness closing my vision, the sounds growing faint and my strength slipping away as I stand too fast to take in the view.  There is a thrill in the sensation, the wondering if I might actually finally just be done, no longer required to keep moving along this rugged path.

But the darkness subsides and sound returns and I find I can stand.  There are mornings I want to despise another wakening, another day before me.  But the Lord continues to add day to day to day and to cause my lungs to expand once again, my heart to beat on.  Part of the struggle to move forward is the not knowing where to go, much less how to get there.  There is no landmark before me.  I have passed by those columns, the markers of an adult life of school and marriage and children.  I know only that I must work to provide for my life and I will continue to be a mother as long Solveig or I dwell in this land of the living.

This past week has brought light to another place of darkness, to another great fear now realized.  I see now that I am ensnared, caught in a tangle.  I see that I am not just the mother who has lost her child, nor the woman whose husband has cast her off, but there is blood on my hands.  Somehow in the swell of my sorrow, the tears that constantly fill my eyes and blur my vision, the deafening wail of my own hurting heart, I had not really seen how much I too have been perpetrator, doer of harm.  Oh I have always been well aware that I am not perfect, that I sin and fail along with everyone else, but this week in conversation with a number of people, I have had to face that I have also thrown the dagger, my whirling fury and fear has inflicted harm and brought pain to others.  I too am to blame.

On Tuesday night and on Wednesday night and on Thursday night I wailed out into the dark night sky with sorrow and horror that I have brought harm I cannot undo.  I have no ability to go back, flying over the surface of all those long gone days, scanning for the moment when the devastation began, to know the place to go back to and intercede, to rewind and redo.  The universe does not work this way, there is no reversal of what has occurred and I gag and my heart roams, rushing to and fro, aghast and uncertain, what now to do with all this ravaging, ravaging added to ravaging, loss to loss, wound to wound.  We are all a bloodied mess.

I don’t know what to do or how to proceed.  I want there to be some “clean-up” protocol for this toxic spill.  The way forward is uncertain, but the Lord has made at least a few steps clear, coalescing out of the muddied fog.  I must take stock. Like the explore Clark, like Lewis, I need to travel through this land and make note of what is here, to walk down into those frightening valleys, to walk the plains and scrabble up the mountains to see the view from there, I must look at the landscape of my heart, of my life, of my interactions with those with whom I dwell.  And then I will begin to know the contours of the harm I have inflicted, I will start to see how one connects to another, how self pain intertwines with the pain of others and loops back again to intersect and bring about more pain.

I don’t know the way forward but I know that owning the harm I have done and asking forgiveness from both the people I’ve harmed and from God, is the place to begin.  Inviting the eyes and ears of others to help me see and to hear where I have been blind and deaf is a place to begin.  Asking wise guides to tenderly and courageously lead me to help make sense of it all is essential.  I don’t know where this road leads, but I never really have anyway.  It is terrifying to face the real fact that I have lost Sten and my marriage and my life in significant ways because of my own failings and my own sin.  He and I, we both have blood on our hands.  And I cannot undo it.  I can only ask the Lord of the Universe for forgiveness for the ways I hurt Sten and failed him and seek His provision and guidance for the road before me.  I must ask Solveig my child, and Solveig the woman, to forgive me for the way my sin undid what should have been hers, a home with two parents committed to loving one another.  I have to ask my parents and my in-laws and my brother and my brother-in-laws and my sister-in-laws for forgiveness for the part I have had in all this ravaging and its far reaching impacts on our family.  I have to ask forgiveness of the on-lookers who just shake their heads as they pass by this messy tragedy.

So much of the time it all just feels like too much.  Too much.  And I should like to just slip away, to cease existing, to vanish.  After Sten told me he no longer wanted to be married to me, I could hardly eat for two weeks.  I whispered to myself, I don’t want to exist.  I far prefer to no longer be.  I wanted desperately to waste away.  I sit across from the man who mourns his life and despairs his existence and I know that woe, that radical inability to go back, the incapacity to change what is true, the appeal of no longer having to endure the turmoil.  Can I not just lay this burden down and never ever have to raise it up again?

This is what my dear brother Patrick wrote to me as I expressed my undoing grief:  “I know this may sound like a platitude, but I sincerely believe this: no matter how bleak life may seem, no matter how broken your mind, heart and spirit may be – life and love and joy will creep back in.  All is entropy, yet life continues to find a way.”

And I believe this is truth.  All around me the creation exclaims it, in the voice of the rustling, flitting aspen leaves, in the deep thunder in those steel gray clouds, in the incessant vibrato of the crickets, in the water that makes way through rock, in the unweighable girth of the snow flake who one by one by one amass to form the glacier that gouges out the mountain wall, in the rush of the wind through the fir boughs.  There is a force that overcomes another.  “You know that moment?  That moment when the plane is rushing down the runway, and the whole frame of metal riveted to metal shudders at the attempt, and then there is that glorious, mysterious, terrifying moment when the force of gravity is finally overtaken, overcome by the law of thermodynamics?”  You get lift, you rise.  I doesn’t seem like it should be possible.  It is illogical that a great mass of metal should dwell far above where your neck cranes to see.  And yet it is, it is.  One force overcomes another.

Yes sin and death are powerful foes, seemingly unstoppable, absolute and concrete, permanent.  Yet there is another force at work.  There is a power that overcomes their power.  There is a life that overcomes their death.  My hope is in Christ.  I’m banking everything on Jesus.  I open my eyes to another day rather than finding a way to extinguish my existence because I have hope.  I am looking for the redemption and resurrection that has already been secured in Jesus.  Yes, I have sinned deeply and vastly and there are real and brutal consequences that I have to live with as do many others who have been impacted by my harm.  I have to live with those gouged out places in my being where once dwelt a man I loved named Sten Karl and a little bright love named Allistaire Kieron.  I can never get them back in this life.  I have to live with these scars.  But my hope is in Christ Jesus, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  I fix my eyes on Him.  I lift my eyes.  I take in the full view.  My sins are forgiven in Christ.  He can redeem all this brokenness.  This is His promise to me, to all who believe in Him.  I will see Allistaire again.  Death will not have the last word.  There is a river that flows from the temple of God, from the altar where Jesus laid down his life as the perfect lamb.  This river brings healing and life and one day I will sit in the shade of trees along that river and I will know bounty beyond my imagining.

How to get there?  Where to go?  What is the path?  Jesus said it so simply and clearly and profoundly.  Jesus answers, “I am the way and the truth and the life.  No one comes to the Father except through me.”  Jesus is my way, He is my truth, He is my life.

– – – – – – – – – – – – – – – –

The honest truth is I have finally made myself face this blog and attempt to put some words to all this immenseness because I still need your support and I am utterly aware of how wretchedly tacky this is, but the earth has once again swung around its orbit to summer, to August, to Obliteride in less than a month.  For the fifth time, yet again in weariness, with tears, I will ride my bike.  I will try to push through 5o miles to raise money for cancer research at Fred Hutchinson Cancer Research Center in Seattle where so much of Allistaire’s treatment options came.  Whatever difficulty this is for me only binds me closer to Allistaire who endured so much as a little girl and who ultimately had her life ravaged and extinguished by the relentless onslaught of cancer.

So many of you have already given so much, and I haven’t even thanked you in the entirety of this past year for how generously you gave in her honor, not only last year in the wake of her death, but each year.  I ask your forgiveness for my lack of articulated thanks and I ask your grace to trust that there is much I have simply been unable to do this past year.  I am often quoted the statistic that 70-something percent of marriages end when a child dies, and while I refuse to give credit for all this devastation of my marriage to our girl’s death, it is indeed true that cancer not only took my Allistaire, but it also extracted a great price in my marriage with what amounted to years of separation and more stress and strain than I can rightly begin to describe.  The ravages of cancer are still cutting into my life, as it is for so many far and wide.  If you are willing, I ask that you would consider supporting me again this year in Obliteride, to support an accelerated pace of cancer research that will yield better and hopefully, curative, treatment options for both children and adults with cancer.

If you would like to donate in support of cancer research, please click HERE to be linked to my Obliteride page.

I feel compelled to make one last point.  The single biggest reason I have not found the ability to write this past year is that I have not known how to be real and honest and do so in a way that gives as little attention to Sten as possible.  I love him and I will never turn away my heart from him.  I sincerely want good for him and I kept quiet for so many years in an attempt to protect him from criticism, to give him as much space and time as possible to sort through his own difficult wrestlings.  I have no desire to bring harm to him in my heart or with my words and simultaneously I am trying to find a way forward to be real about my own heart and to voice my own story.  Please know that I will not allow any comments that cut him down; they will be blocked or removed as quickly as possible.  I cry out to God all the time to remind Him that I do not deserve Him any more than Sten does.  On June 16, 2001, I made a covenant before men and God to always love Sten, until death do us part.  I have no allusions about any future relationship with him, but I intend to keep my covenant of unconditional love, with the great aid of the Holy Spirit.

 

Lilly

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12107786_10153431748189667_4156990417936886173_nWith only half an hour before Allistaire would be done with school, I ran to the 5th Floor PICU, sweating in my shirt and wool sweater, boots heavy.  With sweater stripped off, I donned the ugly pale yellow gown and one blue glove.  As I drew back the curtain and entered the room, heat slammed through my body, my hand shaking as I struggled to get on that last glove over a hand slick with sweat.  All strength left my legs; I felt as though I might collapse.  What here?  What is happening here?  But the reality was glaring, my eyes closing against the intensity of the scene before me.  Breath caught in my throat, gagging.  The family so gracious, holding onto me, arms around steadying.  Who am I to be comforted when before them lay the unfolding of all of our worst fears, this brutal culmination of years and years of struggle?

But I had been in that room only two days before.  We knew it was bad.  She was breathing fast, her little chest heaving in rapid expansions.  The fungal infection could get worse before it gets better the infectious disease doctors had said.  It seemed it could go either way, but of course, we hold out hope, she had already overcome so much, so much.  But now, the way was clear.  Her mom and dad huddled around her, straining with all their flesh and heart and spirit to attend to her, this small girl the magnetic center of that room, all bodies and faces turned, intent, alert, stunned and mourning.  They would do anything, anything, anything in all the universe to care for this precious, beloved little girl.  Her dad adjusting the oxygen, a little here and there, her mom rubbing her tummy, speaking words of love to her daughter, declarations of how proud she is of how bravely and hard she fought, but now, now, little love you can rest, rest.

It was agony, I felt my heart being gouged out.  Trembling, tears flowing but utterly insufficient to bear the tide of sorrow, just plain core sadness, pervasive, total, absolute.  I glanced up at the monitor, her little heart pounding a hundred and sixty, a hundred and seventy beats a minute, a sprint, a desperate determination to keep her going.  The nurse bends in low and Heather asks if it’s near.  The end will come, but it is not yet very near.  I have to leave, I have to go get Allistaire.  Someone asks where she is and I say school and the contrast of my little girl, bright and bursting with life enjoying school felt so awful in light of the struggle playing out before us in this little room packed with family and machines.

How many times did Allistaire and I run into the two of them?  How many times did we stand talking in this hospital, mirror images of one another, mother and small daughter ever at our sides, Heather and Lily, Allistaire and I.  Ever coming and going, endless appointments, infusions, transfusions, labs, victories and defeats and always hope, always the determination to keep walking forward, hoping and praying for the next open door.  We made sure Dr. Cooper knew that when he talked to one of us, he was talking to a group of powerful women, mothers with whom he would have to contend.  We will share information, we will question and push for more, we will exert our force against the barriers and call for more, more for our sweet little girls.  And here, here in this moment their paths diverging, this little girl’s veering off to death, so swift, a force unstoppable, the speed suffocating, bewildering.  When did it all turn, when was the last time things were “normal?”  When did she last declare with her darling, little voice, “I love you mommy.”

I had commitments the next few hours, I would try to come back.  The pink never left my cheeks, a flushing like overdone blush.  My socks cold from sweat and shirt soaked, everywhere adrenaline drenched cloth.  I shed off those clothes and prepared to go back, back into a room where I imagined she was likely already gone.  I wanted to go, I wanted to be there for my friend, if only to stand witness to her pain, to honor her daughter’s sweet spirit, but, oh how I didn’t want to intrude on so private a space.  I was welcomed in.  The two of them lay in the bed.  It had been a few hours since Lilly’s heart finally gave out.  She looked merely asleep, her chest still, tucked into the curve of her mother’s side.  I could only gasp, “oh, oh…”  Heather called me over and I sat there on the bed with them, her small, cool hand and her mother’s warm hand clasped between the two of mine that could not stop trembling.

Through stuttering heart and mind, I fumbled to call out to the Lord.  Oh Father, Father…we are so small, so very small and weak, so frail in this dust, this life that comes and goes like a vapor.  Have mercy Lord, mercy, remember that we are formed of mere atoms, and yet, yet…we are of infinite value, staggering beauty, eternal beings because you have made us in Your image.  We mourn so mightily because we grieve for more than flesh, more than cancer cells and heathy cells and donor cells, we cry out for we will desperately miss this little bright spirit, this eternal being, this little child, Lilly.  And here we sit, in this deepest dark of the year, as the earth veers toward Winter Solstice, our hearts groan in the dark.  Our chests heave in agony, in the weight of this broken world, so devastatingly broken. Isis and ragged, desperate refugees, shootings everywhere…broken bodies ravaged in an attempt to eradicate disease threatening to consume.  Yet we wait, we wait expectantly.  It is the season of Advent, of anticipating the coming of Christ, the promised Savior, God Incarnate, Emmanuel, God with us.  Christ who came in frailty and would die in frailty.  And yet, in His very death, when He seemed the weakest, He in fact demonstrated His incomparable might and holiness, Jesus Christ overcame sin and death – He overcame.  In this pressing darkness, hope, hope and a promise of resurrection, of redemption of all our sorrows, of a world healed and whole, with no more tears.  Oh, Jesus, in you we place all our hope.  Though my flesh it be destroyed, yet with my eyes I shall see God!

As Heather stroked Lilly’s gorgeously soft strawberry blonde short little hairs, she looked at me with eyes weary, glistening with tears, but clear, clear.  “You know, Jai, you know how you wrote about being able to imagine a good life with Solveig even if you lost Allistaire?  I can imagine a good life with my boys, always an absence, but a good life.”  She spoke of peace, peace and rest that this fight at long last has come to an end.  No more fighting.  No more struggle.  “Yes,” my heart repeats.  This is the exact scenario Dr. Cooper has warned us of, “going down in flames from an infection in the ICU.”  It has been like living out a scene from our own lives.  It could have just as easily been Allistaire, it may still be.  But there is peace, rest that you went just as far as you could go.  You press forward, slashing the limbs before you, a barrage of barriers, you hack your way forward.  How does one give up on these bright, flashing little girl spirits?  Lilly, Stevie, Allistaire battling that foe AML with ferocity and wild resiliency of childhood.  Can we as their mother’s give up?  Can we hand them over?  We will no let up, we will not cease our straining forward until at last the time may come when there are no more doors.  Rest, rest in peace sweet child.  You need struggle no more.  You have been released.  Yet, having borne witness to this day, I am all the more determined to walk forward.  Yes, this too may be the end of Allistaire, but like Lilly, we will fight to the last, and then, then when the time comes to rest, rest.

I lifted her hand, kissed her little fingers.  I rose from the bed and stood in the circle of those who have known and loved and cared for Lilly all of her eight years, through all of her eight years of battling this menace, leukemia.  I looked in on sacred ground, intimate, precious moments.  Lukkes, Lilly’s big brother, had climbed into bed next to his little sister, Heather’s arm encircling two of her children.  “Is today December 4th?” he asks?  “No, no I think it’s the 3rd.”  Silently I gasp knowing how this date will be ever deeply imprinted on each of their hearts, this line between a life with Lilly and a life without her.  I glanced up and was struck by the sight of the IV pole, encumbered with numerous pumps but everything dark, the syringes of meds still attached, but at the floor a tangle of tubing and stickers, disconnected.  The monitor black where once bright green and pink and blue lines and numbers flashed declaring details of life, of a beating heart and breath.  The child life specialists had taken casts of hands and a silvery print of her hand now adorned a clear glass ornament.  They worked in silence, in reverence.  Callie, who delights to play with Allistaire and to whom Allistaire rushes to hug, was now in this room carefully preserving tangible memories of the body of a little girl with whom she had played.

Some three hours after Lilly’s spirit left behind her broken body there in that room, Heather’s sweet sister, Heidi, leaned over and gently asked Heather if she was ready.  A quiet “yes.”  I don’t know how she did it.  How did she will her muscles to flex, to move the distance away from Lilly, to form that gap of space between Lilly’s side and her own?  My heart, already tattered, seemed to find new depths of ripping, deep agony.  Was not Lilly’s body formed within Heather’s own?  And had she not all her days cared so fiercely, so tenderly, so utterly for Lilly, flesh and spirit?  Where did Heather end and Lilly start?  The overlapping of beings, how to pull apart that which is integral to the other, woven through all layers…Heidi moved into the warm place left by Heather.  And then, Heather leaned in low, looking into her daughters closed eyes, holding her hands, telling Lilly of her tremendous love for her, of the honor it has been to be her mother.  Her father, John, head down on the bed, hand clasping her arm.  Somehow they stood.  Somehow they turned.  Heather reached for her coat and the orange parent hospital lanyard, an encircling of orange she would likely never again have to wear.

I kissed her cheek.  I had to go.  I looked down and saw I was the only one wearing the yellow gown and the blue gloves.  I was the only one in the room with a child still to protect, a child utterly vulnerable, whose immune system had been laid to waste by chemotherapy.  I stripped them from me, carefully washing my hands, aware of the danger of spreading C-diff from Lilly to Allistaire.

How do you leave the hospital without your child?  How do you even walk out of the room?  The next day I drove into the parking garage to take Allistaire to school and to clinic for labs, to see the doctor and get platelets.  Many times throughout the night I woke up and there were Lilly and Heather.  She will never again have to drive into this cold dark garage.  Walking through the halls, through the worn paths between clinic and Ocean Starbucks, past the gift shop, up and down the same stairwells, like hallways of your own home, I was struck…we will never again run into Heather and Lilly.  I remember clearly the corner on the 7th floor where we first met, where Heather stopped me and asked if I was Jai.  She told me recently that she had prayed fiercely for Allistaire when she was in the ICU, long before we first met.  In fact, her whole family was praying for Allistaire.  The truth is I am wildly thankful she no longer has to bear this burden so dominating it overshadows everything else.  Now she can give attention to her two boys and husband who’ve had to stand in the backdrop for so long.  No more labs, no more numbers to dictate your life, no more endless hours in small rooms, closed off from the rest of the world, isolated.  It feels like betrayal to speak such things, and yet, what mother can choose between her children?  There are two young boys who also need their mom. There is relief in no longer having to choose.

My heart is with you dearest sister, strong, beautiful, tender Heather.  You have crossed over that line.  You have faced a hundred thousand terrors.  You’ve endure so much.  Our Lord has upheld you through countless trials.  And yet before you lies a new landscape, a land with new dangers, woes, joys and opportunities, open doors.  Lilly will always be a part of you.  You will always be the mother of three children.  You will always bear the deeps scars, the wounds of this hard road.  And yet, it is my sincere hope that from these losses, these searing tears, beauty will rise up, life will unfurl from death, that the Lord will be faithful to redeem.  We wait in the darkness, anticipating the coming light, remembering the first coming of Christ, frail, small, a child.  We cry out for His return as powerful King, with the creation we groan, we long for that day when we will wait no more, and all His promises will have been fulfilled.

“Through many dangers, toils and snares, I have already come.

‘Tis grace has brought me safe thus far and grace will lead me home.”

Then I saw “a new heaven and a new earth,”for the first heaven and the first earth had passed away, and there was no longer any sea.  I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband.  And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God.  ‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

Revelation 21:1-6