Wednesday…come and gone

Standard

IMG_0340Maple frosting flakes off my scone onto the table top.  I pick up each little tidbit, placing its happy sweetness in my mouth, the sun reflecting in the warm gold of the table’s wood grain.  Even as my fingers grasp the delicate skin of sugar my mind contorts asking if it’s really a good idea to just pick something up off of a table and put it in my mouth, I mean you do realize you’re putting whatever is on that table straight into your mouth.  You don’t know what’s on that table.  You’re flirting with danger.  That’s not a good idea for Allistaire, you could get sick.  In defiance or fatigue I eat the frosting, licking my fingers.  Maybe I fixate on the warmth of my latte and this maple pecan scone because I am procrastinating setting my fingers to this keyboard.  Maybe I eat sweet decadence and feel the satisfying warmth of coffee down my throat because it feels like caring for myself, feels like the tender bandaging of wounds, of soft humming over tears.

The sun flickers through the heart-shaped leaves of the Katsura tree outside the window.  Why when I had a bit of time this afternoon after my meeting, did I head into the heart of the city and pay for parking, all to go into Anthropologie?  Am I materialistic?  Yes, yes I am and I wrestle it.  But too, Anthropologie is a feast for the eyes, groupings of color and pattern, of plant life, wood and ceramic.  There is a restfulness and cheeriness too to that beauty.  It is the closest thing to walking into my house.  Oh how I just long, long, with aching yearning to be home, to dwell in a place that is my own, that feels safe, that is familiar, that is of my own making, that is not intruded upon, that is not dictated by others.  I long for ordinary common life of grocery shopping and making dinners in anticipation of seeing Sten driving down the driveway, coming home, calling in the girls from the adventures in the yard, of looking out my kitchen window at the Spanish Peaks, of cows grazing in the meadow below, of aspen leaves flickering in the sunlight of June afternoon.  Rare is the occasion that I allow myself to even conjure these images, the tears just flow, the sorrow lancing out of me leaving me even more worn.  So I go to Anthropologie walking in the midst of beauty of someone else’s expression of creativity, trying somehow to satisfy that craving to create, to put my hand to craft, that desire that has no outlet.

I circle my computer, giving it wide berth.  It sits silent in my bag but demands that I attend to this blog, this accounting of Allistaire’s flesh, of my heart, of this ragged road I trudge, my feet tripping over stones, fatigue weighing down my legs, pressing my face flat.  Sometimes I want to yell back, “What have I to say?  What?!”  For when I sit to write, really I am calling out again, not just at night as tears slip hot down my cheeks, not just during the day as I plead for patience, for wisdom, for grace with Allistaire as I battle her over food, over taking meds, I am calling out to the Lord.  What do you have to say oh God?  What answer do you give to my weeping, my raging, my flat silence, the groaning of my spirit, the trembling of self exhausted?  I need more Lord!  I need new!  And sometimes it just seems like silence and I yell all the more and I cry out, do you hear me?!!!  And I question if He’s really there.  And I consider whether or not all my beliefs amount to nothing more that wild speech and desperate absurd hoping.  This query ever turns to smile in the midst of my tears.  Look at the beetle in all its wild extravagance of color, pattern and fanciful design.  Does not the beetle reflect in Technicolor the glory of the Lord?  The feather, the leaf, the shell, the flower, the seed…oh do they not all answer back with endless hallelujah that the Lord IS GOD?!!!!

So I yield, I bow, No, I fall flat before Him again.  I tell Him, I worship You, I really do fall down in adoration of You, because Your beauty…it just stops me in my tracks, it stuns me, it shuts my mouth and I cry because You are too much, too gorgeous, too resplendent.  But God, but God, do you see me?  Do you see me here, with my face on the ground, my heart tearing from sorrow.  Do you not see how broken I am, how spent, how undone, how torn and shattered, how desperately weary?  What do You have to say to me?  Be not only a majestic God, far off, above with eternal plans.  Oh Lord, my sweet God, hear my cry, come down, come down low, come down to this dirty ground with me, meet me in my desolation.  Can I ask such a thing of God?  God of creation?  God of eternity?  The Ancient of Days?  The first and the last, the beginning and end, the alpha and the omega?  But I do, I do!  Come Lord I plead, incline Your ear to me, bend low and look into my fearful eyes.  Oh Lord I need to hear your voice, I need to see your face, I am faint and need to hear your voice.  Don’t I love you as much for your condescension, for your coming down as for you greatness, you vastness and infinitude incomprehensible to me?  Perhaps more, perhaps more.  Perhaps it is that You, God of the Universe, creator of all things, sustainer of the universe, You who holds the elements together, don’t I love you most that such a God as You would see me, this vapor, this flower that fades, that you would love me, that you would care for me, isn’t this what makes my heart sing of your name, because of your tender love, your gentle hand.  Oh Father how I need you.

But I tell You how You must show up.  Don’t You see my sorrow?  Don’t You see this expanse of eight long months fighting this relentless battle, separated from Sten, from Solveig, from home, from family and friends?  This battle doesn’t let up and I need more, you see Lord!  And I despise what feels like silence and I do not want to accept that what feels like a slow smile on Your face.  My 21st Century Western-American self wants the next version.  I want the upgrade.  I need the upgrade.  Yeah, that was good Lord but now I need more!  Thanks for that old comfort, that admonishment of long gone days but I’m looking for a new word, to hear your voice provide me something that meets me now!  Silence.  Silence that feels like abandonment.  Silence that feels cold and uncaring.  Silence.

He speaks, speaks in His silence.  His silence tells me, my child, I have already given you all that you need.  I have already provided for you in abundance.  “Therefore, do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.”  Well thanks a lot for that Lord.  What good is that old trite, worn out saying?  How is that going to help me here, now?  “Eat the manna.”  Hmmmm.  Yeah, yeah, yeah.  Same ole same ole.

But He’s right.  I can pass over those old commands, those words as familiar as the curve of my nose.  So common they’re hardly visible.  I can disregard His truths because I’ve heard them before but I am fool to do so.  The Lord is telling me, I have already given you instruction on how to live these brutal days.  When I scoff and belittle His words, I lose.  I’m left floundering.  Panting and worn out.  Brittle.  Exhausted.  I weary of who I am.  Where is the water to satisfy, to cause flourishing?  I want to be the tree planted by streams of water, bearing fruit in season, even in wilderness.  Why deprive myself?  Why leave the path of the Lord?  Because it has become ordinary?  Because I weary of perseverance?  He draws me back.  He woos.  Entreating me, inviting me to once again rest, rest.  Will I worry about tomorrow?  Or will I worship Him as the God He is – will I entrust all my days to Him.  Oh my flesh flails and rages, wild with the desire for control, to be the one who decides, because I only see my tiny finite view and I bellow with cries for what I want.  A child in a tantrum.  The Lord asks me to look up, to lift my eyes, to take His hand and rest, allow Him to lead.  Will I consent to the simplicity of living this day, this hour, this very moment to its fullest?  My weak flesh stomps its foot and declares, “But I’m just tired of having to do that.  I want to be done with this hard stuff.  I’m ready to satiate my desires.  I want the good life now, here.”  Do I really believe what I say I believe?  Is this life what the Lord says is true or is it what my flesh proclaims is most important, significant, essential?

I shake my head, clamp my eyes and open again.  Baffled, I think, shouldn’t I be fine with all this by now?  Shouldn’t this be normal?  Shouldn’t I have figured out how to live this life after so long a road?  I circle back, wandering in weary heart from the Lord and then I circle back.  Over and over again, I return to Him.

It was a spectacular sunny Saturday morning.  Allistaire, with glee on her face, climbed the stairs and sped down the slide over and over.  The air was alive, bright, crisp blue skies.  We have to go Sweets, I tell her, we have to go now.  Her shoulders slump and her smile turns downward, feet grazing the ground.  I try to make the best of it but inside I grumble that we have to leave this lovely life, this world on the outside, and go sit in the hospital for hours to get a blood transfusion.  I sit in the darkened little clinic room scanning Facebook when I come upon a post about a 14-year-old girl, Ahmie, whose mom is praying for her quick and quiet death as tumors fill her body.  Awareness floods my body, heat, suffocating.  This girl has cancer, she’s been being treated here at Seattle Children’s and she is dying.  Likely today she will die and her mom will never hear her voice again nor see bright joy in her eyes.  I turn away from Allistaire to hide the tears that overwhelm me.  Hot, tight, hard to catch my breath.  And I scramble, where is that verse, where is it?  I must read it now.  What does it say exactly?  All I can think is “LORD GOD!  Do you see this?  Do you see what’s happening here?”  My flesh fails, it groans, it groans.  All I can think is, “The whole creation groans,” waiting for the Lord to return, waiting for the redemption of all things.  And I have to be thankful that my girl is merely lying on a hospital bed on a beautiful Saturday getting blood.  Things could be so different.  What an agonizing prayer that mother is praying.  What a horrid thing to have to ask the Lord for.

I find the verse.  I read the verses just before and after, and then, well I have to read that whole chapter.  Romans 8.  Wow.  I sit stunned.  I’ve read it before, so many times before, but wow, wow.   The little boat of our life had drifted and Romans 8 was like a great tether, binding us back into His truth, connecting all the maddening details of our days, lassoing, binding, weaving ourselves and our lives into the magnificent abundance of who HE is and what He proclaims this life to be about.  I circle back.  I’m invited to rest.  He  extends His arm, His hand and asks me to trust Him, that He is in control, in a glorious way that is beyond my imagining.  His finger points, directing my gaze to the manna, the sustenance, the nutrients of this day, this hour, this moment.  He reminds me that I am not alone, though I feel my whole world in a tenuous shatter, a terrifying vulnerability of completely unraveling.  I am bound into Him, by Christ, by His Spirit.  So do not mistake the simplicity, the familiarity of His instruction as something common place, as weakness, as insufficient, as elementary and unsophisticated.  Romans 8.  Wow.  If I had one piece of paper to read the rest of my life it might be that chapter.

As I write, Allistaire’s eyelids flutter, and there is a distance in her gaze as she goes under, as her consciousness wanes.  I laid her down on that narrow bed, the one that will slide into that great whirring circle of the mysterious machine, the one that will produce an image with brightness where there is increased metabolic activity, cancer.  Then a CT image will be overlapped to reveal any masses present, a complete picture of her disease outside of her marrow.  Still sedated, they’ll wheel her down the hall where Dahlia, the nurse practitioner, will plunge the great needle into  her right hip once again, for the 21st time, to pull back a sample of her marrow.  That wee vial will then make its way to the pathologist who will peer down at cells smeared on a slide, looking for evidence of flesh gone awry, of a creation broken, of cells groaning for redemption.  The pathologist at Fred Hutch will then send more cells from the sample, joined to radioactive isotopes, speeding past a laser – each struck with light causing an electron to be disrupted, its fall documented by a wave-length of light.  A scatter plot forms and zooms in the search for even the most remote evidence of leukemia.  By the end of today I should know the results of the PET/CT, tomorrow will yield morphology results and either by the end of Thursday or Friday we will know results from Flow Cytometry.

I feel chased by two wild hounds, snarling, rabid.  I grip Allistaire’s hand and we keep running, running, trying to outrun their ferocious intent to take her down.  Cancer on one side and heart failure on the other.  Her BNP was rising, all the way to 820 last Saturday and her ejection fraction was dropping, down to 26 a week and a half ago.  I knew this bone marrow and PET/CT would soon reveal the state of her disease and decisions would need to be made.  What would our options be?  Was her heart starting to slip backwards?  In April her ejection fraction was 38 and her BNP got as low as 231 (0-99 is the normal range).  Her ANC last week was down to 54.  What would her marrow do, how would it recover?  Her cells for the WT1 trial will be ready as early as July 22nd.  More chemo?  If there’s anything more than 1% cancer in her marrow, the modified t-cells are unlikely to succeed at stopping the progression of her disease.  What then?  More chemo?  Well, it would need to be more hard-core than Azacitidine if Aza hasn’t kept it at bay.  But what, what chemo can her weak heart handle?  Even if there is a chemo that is not directly hard on her heart, a more intense chemo will suppress her blood counts longer, more severely, leaving the door wide for infection, for a sweeping torrent that could once again overwhelm her heart, this time for good, no turning back.  But what option have we?  If there is much disease at all, we must do something!  We must take the risk.  Because if we don’t, we know the outcome.  We know the outcome.  We find ourselves stepping closer and closer to an edge.  I think of Ahmie and her mom’s agonizing prayer.  I shudder.  I pray.  I call out to the Lord.  But you see, He has not promised to save her. He has not promised some number of years in this life that we think we have a right to – there is no allotment promised.  I shudder.  I pray.  I pray.

Do not worry about tomorrow.  Trust me for tomorrow.  I will provide for all your needs.  Eat the manna before you.  Love her today.  Live your today to the fullest.  Live into what I proclaim this life to be about. Because it is not about granite countertops and painting the house a color you like.  It is not about traveling to that amazing country.  It is not about finally losing that awful belly fat that wiggles like a jellyfish.  It is not about having a job and a pay check that makes me feel good about myself and gets me what I want.  It is not about my comfort.  It is not about the hundred thousand things my flesh says I need and the world clammers to echo back endlessly.  Romans 8.  Wow.  The way of the Lord is so, so contrary to how I want to live my life.  His words are hard words.  I want to turn from them because they are hard, hard.  Oh Lord, don’t you see I’m weary?  Can’t you just let up for a while?  Can’t you just let me live my own life for a little while?  Can’t I just hunker down here and indulge?  Lift your eyes.  Lift your eyes!

So I lift my eyes.  I look for the manna.  I seek to love today.  I ask the Lord to help me walk in His Spirit today.  I yield tomorrow to Him.  I call my friend, my older sister in Christ.  I confess my sin.  I ask for the Lord’s convicting.  I ask Him to transform my heart, to love like He says love is.  Forgive.  Don’t keep a record of wrongs.  Don’t let the sun go down on my anger.  Believe the best.  I seek times and ways to worship, to fellowship, to not make the mistake of trying to walk this hard road alone, without the surrounding of His people.  I keep my eyes and heart alert.  I’ve dreamt of Jens.  Both times he gives me no answers.  He is just alive.  Alive.  Jens is alive.  He smiles at me in my dreams, his big sweet closed mouthed Jensie smile.  And I smile.  Jens is alive.  Though my flesh, it be destroyed, yet with my eyes, I shall see God.  I shall see God.  Oh Father, Father, hold my fainting heart.  My heart, my flesh it groans for You, for Your return, for Your redemption of all these woes.

It’s a few hours later.  Allistaire was still recovering in the PACU from sedation from her bone marrow and PET/CT.  It was minutes before 5pm.  I eventually got through to Dr. Cooper.  Ugh.  So wretched.  Six or seven spots of cancer bright on the PET scan – too small yet to show up on CT, but there, there and some in awful places you just can’t radiate – her spine, her sternum, her left humorous, her pelvis.  I couldn’t keep track of them all, the words blurring in my ears, my heart growing faint, heat up my neck, my legs weak.  “Can I see the scan?  I need to see the image.”  Sweet Olwen, the PACU nurse, wheeled us upstairs to the Hem/Onc clinic, Allistaire still too wobbly to walk and I clutching her in my arms, cheek against the extravagant softness of her fine beautiful hair, destined to be gorgeous and curly by the looks of how it’s coming back in.  Oh God.  Oh God.  Have mercy.  An out-of-body experience.  Looking on from afar.  So this is how this goes.  This is how kids die from cancer.  This is how the story dwindles and fades and wears thin until there’s nothing left.  “But I don’t know how to be done,” I quietly wail to Dr. Cooper, the tears in his eyes because he too has a five-year old child.  Dr. Gardner thinks it would be crazy to give her high-dose chemo with her heart so weak, so bound to fail if an infection comes.  So this is how you die of cancer.  I remember asking Lysen, our nurse, long ago, over three years ago, “explain to me, I don’t understand, how exactly does cancer kill you?  What actually happens?”  I watch our path from afar and I fear I know where it is headed and my whole flesh just simply falls, fails, quietly crashes.  She is too alive. Too alive.  How?  How do you stop the fight?  We’re not there yet, I know.  We need the bone marrow results.  We need to know how much is in there before we really no what options she has.  Go down in flames?  Go quietly?  What a brutal wretched quandary.  I despise, revile it all!  Oh God!  Oh God!

Incline your ear to me Oh Lord, hear the faint beating of my heart, my haggard breaths, the silent heaving of my chest.  Be merciful.  Of Father, Father, come down low, meet me here in this dark hole.  Hold my hand, bind me to you.  I put my hope in your holding of tomorrow.  Show me the manna in this day, direct my vision to your sustaining.  Hear my cry oh Lord.  Be gracious.  See our broken family, each of us ravaged in this trial.  Come Lord, come down to us.

Romans 8 New International Version (NIV)

Life Through the Spirit
8 Therefore, there is now no condemnation for those who are in Christ Jesus, 2 because through Christ Jesus the law of the Spirit who gives life has set you[a] free from the law of sin and death. 3 For what the law was powerless to do because it was weakened by the flesh,[b] God did by sending his own Son in the likeness of sinful flesh to be a sin offering.[c] And so he condemned sin in the flesh, 4 in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.

5 Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. 6 The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. 7 The mind governed by the flesh is hostile to God; it does not submit to God’s law, nor can it do so. 8 Those who are in the realm of the flesh cannot please God.

9 You, however, are not in the realm of the flesh but are in the realm of the Spirit, if indeed the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, they do not belong to Christ. 10 But if Christ is in you, then even though your body is subject to death because of sin, the Spirit gives life[d] because of righteousness. 11 And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of[e] his Spirit who lives in you.

12 Therefore, brothers and sisters, we have an obligation—but it is not to the flesh, to live according to it. 13 For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.

14 For those who are led by the Spirit of God are the children of God. 15 The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship.[f] And by him we cry, “Abba,[g] Father.” 16 The Spirit himself testifies with our spirit that we are God’s children. 17 Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.

Present Suffering and Future Glory
18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that[h] the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who[i] have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”[j]
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

IMG_0068 IMG_0081 IMG_0095 IMG_0098 IMG_0108 IMG_0129 IMG_0197 IMG_0207 IMG_0142 IMG_0147 IMG_0148 IMG_0149 IMG_0150 IMG_0165 IMG_0219 IMG_0222 IMG_0182 IMG_0292 IMG_0308 IMG_0316 IMG_0320 IMG_0322 IMG_0324 IMG_0330 IMG_0370 IMG_0377

14 responses »

  1. Crying…oh precious Allistaire! I’m so sad about your news. It just doesn’t make sense to me except to for me to focus on the Scripture you posted. Thank you for bearing your soul…your beautiful, deep soul. Lord Jesus come near!!!

  2. When my daughter died, I had no time to prepare….your anguished cries to God have put words to my grief as well. My Dad went to heaven just 5 weeks later. I knew my daughter was with Jesus, but also then, quickly, her grandpa. Very soon after her death I had felt God say to my spirit “She is with Me”. Often now as I think about the would’ve and should’ve s….He speaks again..”Leave it with Me”.
    In my flesh I will see my God…and my Dad, my daughter….
    Jesus is there, Jens is there…find rest in God.
    I’m praying for all of you…with a hurting heart of love.

  3. Thank you so much for sharing, bearing, hurting and crying so openly as you do. Thank you for being so painfully honest with us. God is using your words to reach other desperate souls, like me, why do we act like we are something we are not? Not only do we do that in front of other people but we do that in front of God, Who knows us better than we know ourselves. If our loving Father can speak to your heart the way that He does, in spite of your self proclaimed doubts, if He can convince you that His truth reigns, that His love for you goes so much deeper than you can comprehend, then the rest of us have hope too! The Holy Spirit IS working through you!! God bless you, your family, and your precious Allistaire.

  4. I love you. I don’t know what else to say. I think of you all often, I ache for you, I don’t understand, and yes, I cling to Christ alongside you.

  5. Words fail me after reading your blog…
    Please know that your,Allistire, and your whole family are always in my prayers.
    God Speed my friend….

  6. HIs Grace… to lift your eyes!
    “We don’t know what to do, but our eyes are on YOU, Lord.”

    May you know, feel, and live in His REST ON EVERY SIDE of you.
    Swaddled and held.
    (2Chron20)

  7. Jai, I have no words- I read today from Anne Graham Lotz-the God of the storm is also the God of all comfort. 2 Corinthians 1:3-4 Blessed be the God and Father of our Lord Jesus Christ who comforts us in all our tribulations.
    Continuing to pray for a miracle.

  8. I’m back in Seattle visiting for the first time since Olivia’s diagnosis almost 4 years ago. Our paths crossed on December 9th of 2011 and I won’t ever forget. Over by the bicycles, Allistaire’s sweet baby curls and you, so warm and full of grace; such a comforting presence during that dark time. I don’t want to believe what I’m reading. I’m still praying for her miracle. Hoping for more options and more time. Praying for peace and comfort. Thinking of you and holding you all close. Love and hugs.

  9. As others have said, thank you for sharing your journey. I’m so glad Lysen shared your blog with me. I wish we had met when I was spending so much time in Children’s with my daughter who passed away on April 24th. Our journey is so different yet shares so many parallels.

  10. I was led to pray for the manifestation of Jesus’ healing. When I see Allistaire’s face, I see not sickness, but the glory of Jesus. I see the Victory of Jesus swallowed up death. I see the power of Jesus’ blood. The key of death is in Jesus’ hand. He has heard your prayer.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s