Amputations

I warned her long before, that I can't just let life take it's course at the end of relationships. That my track record is a pretty unblemished path of destruction. I tried to tell her all of it, but damned if my brain didn't hogtie my tongue. What came out wasn't a clear enough description. Once again, someone I loved and trusted, someone who trusted me, I broke it all to pieces and here I am with the sledgehammer in my hand and dust still settling and I'm crying because it's all broken. I broke it. I can't stand it being broken. Where is the middle path? 

In that moment, the waking up moment when your rage and fear subside and you look around and you see what you have done, that is the most sickening sensation I've ever known. When your sickness leaches out and suddenly you are someone else, someone you can't control or predict, understand or desire to be - when all you can do is try to hold the reins as tightly as possible so you are still in one piece when the ride is over - the crash at the end is as much a surprise to you as it is to anyone else.

I didn't see it coming. I can't hear the train of my own crazy leaving the station. I don't even know it's moving until I'm trying to hold everyone in as the wind threatens to tear the cars to pieces.

Much of what I say to the sky these days is unintelligible. The person I'm most angry at is myself. I hate that I haven't grown up or learned or progressed. How is it possible to regress in an instant to the social function of a small child? Who is going to fix me if I hurt anyone who comes close? How do I quit hurting people?

More questions. Fewer answers. More desperate for help, less help available.
No matter how hard you fight the current, we're all just circling the drain.

Wrestling the void

Sometimes it seems that I will be eternally stuck in Ecclesiastes.

The deepest and wisest thinker on earth seemed to be able to at last free himself from the tears over all the sorrows and fears of all the tomorrows and eat, drink and be merry. I am still in the working it out phase. But I understand when he declares all life meaningless. I so get that. I get it so much I run from it. I'd rather be a sobbing mess than a devil-may-care meaningless.

I have two mysterious dry patches on my cheeks where tears have too often pooled over the past week. I've dropped a quick 10 pounds. Yesterday in class I was on a panel of professors and had to tell about the most painful or scary medical error I'd committed. {That was fun.} Today I sat with my friend as we read through her pathology report. She asked me why some people just never seem to catch a break. I shook my head, and more tears. What answer have I? All I have an answer for is the hope I have, not an answer for catching breaks. 

I sit down on the cold walnut piano bench every night, no matter how late. I sing the songs, no matter how high, no matter how my voice breaks. It seems natural that it should break. Because I'm weeping words really, just set to music. My fingers are stringing together a prayer, a lament, a whisper, a groan, a feeling, a question in the crescendo and decrescendo of notes forming diminished chords and minor thirds. Father, I come, quiet my soul...Everything I once held dear, I count it all as lost...Lead me to your heart through my darkest hour...

And next comes November.

My soul is weak

My heart is numb

I cannot see

But still my hope is found in You

I’ll hold on tightly

You will never let me go

For Jesus, You will never fail

Jesus, You will never fail

Simply to the cross I cling

Letting go of all earthly things

Clinging to the cross

Mercy’s found a way for me

Hope is here as I am free

Jesus, You are all I ever need

and I am clinging to the cross

Even darkness is as light to You, my Lord

So light the way and lead me home

To that place where every tear is wiped away

For Jesus, You will never fail

Jesus, You will never fail

What a Savior, what a mystery,

You were crucified, but now You are alive...

When we lose hope

In the midst of our shame and self-contempt, as we undergo correction and consequences from the hand of God, we can lose sight of the big picture. All we feel is the awesome power of this God we have offended, sinned against. We forget about Jesus as we're swept up in the thunder of His voice and His majesty and sovereignty. Like the child on the lap, receiving instruction, we're afraid of what comes next. What if God allows the worst to come to pass? Sure, we know we're going to heaven in spite of all our wretchedness, but what if He turns His face? We read all about this throughout the Old Testament, and in our isolation and desperation, we forget to trust His goodness and forget all about Grace.

The Lord has swallowed up without mercy...He has bent His bow like an enemy...the Lord determined to lay to ruins the daughter of Zion. My eyes are spent with weeping, my stomach churns. My bile pours out onto the ground. All who pass along the way clap their hands at you: they hiss and wag their heads at the daughter of Jerusalem. You summoned as if to a festival day my terrors on every side. You have made my teeth grind on gravel, made me cower in ashes; my soul is bereft of peace; I have forgotten what happiness is, my endurance has perished. So has my hope from the Lord. (from Lamentations 2 and 3)

I have been in the place of hopelessness. I understand what it means to look at the graveyard of your broken dreams and wonder why God allowed them to be crushed, spit upon, hissed at. I have felt as though my sin is written like a scarlet letter on my forehead for all to see. I was the scorned daughter of Jerusalem, that one person He just couldn't love. Where is God in the midst of our sorrow and suffering? Where is He when we feel so alone that the world feels like a hollow echoing canyon of our grief?

The truth comes, fresh and miraculous and beautiful and wonderful, in the next verse.

But this I CALL to mind, and therefore I have hope: the steadfast love of the Lord never ends, and his mercies are new every morning. (Lamentations 3:21-22)

It is the paradox of God as perfect Judge and perfect Redeemer that many never reconcile. It is too big for our small human brains. So used to experiencing one emotion at a time - or at best, ambivalence, the combination of two conflicting emotions locking horns in our souls that leaves us confused and befuddled.

It is the love song that follows the correction, the joy that accompanies reconciliation. It slowly dawned on me that He allows things so that His glory might be known. The fact that I have survived, and that I thrive spiritually, a tree planted by living water, through hell or highwater, through abuse and health crises and isolation and depression - this is for His glory. It is the jewel I lay at His feet, my willingness to bear the consequences of my sin without growing bitter, my willingness to stay under (my Greek word for 2011) my trials until their completion, until He shows me how He has redeemed it all from the very beginning.

Just as I am, without one plea,

but that thy blood was shed for me,

and that thou biddst me come to Thee,

O Lamb of God, I come, I come.

Just as I am, tho tossed about

by many a conflict,

many a doubt,

Fightings and fears within, without,

O Lamb of God, I come, I come.

Oh, I come to the Son who can heal with His wounds,

Oh, I come to the Thief who has robbed every tomb,

Oh I come to the Victor, my life and my Love, O Lamb of God, I come.

Just as I am thou will receive,

will welcome, pardon, cleanse, relieve,

Because Thy mercy I believe

O Lamb of God, I come, I come.

~an old hymn made new by Shaun Groves~

linking arms with Ann and Bonnie today:

The story of this battle

Jesus took me on an amazing journey in the past 2 weeks. After struggling, struggling, struggling with depression for months, trying this medication and that, I was suddenly plunged into the depths of the dark pit of my own past sins and Satan's wrenching grip. God felt so far away, like a satellite makes it's slow orbit around the earth - He, making His silent orbit around me a million miles away, just checking in those darkest hours of the night. Faith fit me like a clumsy second-hand coat and I couldn't find my battle armor. Faith is lost, and is carried away out of their mouth (Jeremiah 7:28b).

I hurt myself, people who care deeply about me, loving and respecting and believing, sometimes, I think, in the "writer Genevieve", not the real and battle-worn Genevieve standing before them. The cost of believing in little snippets of joy is that sometimes the darkest sorrows spin underneath beyond the glimpse of anyone but yourself. I should have reached out for help much sooner. I never want to forget that. My past sins seemed to surround me, drowning out hope. You summoned as if to a festival day my terrors on every side (Lamentations 2:22 exc.).

And so, dying on the vine, hope squashed and faith seeming nothing but mirage, I asked God for heaven instead of this bleak earth. Those people I hurt - they were crushed this time. I broke the trust of my caregivers at the hospital where they tried to titrate medications to bring me out of the fog of disillusionment and grief. As I saw what I had done - laid waste to every dream I've ever had, forever scarred those I love best, traded ashes again for beauty - I never wanted to do that again.

A dear pastor came and spoke Truth into my weary head, and I began to sense myself re-entering the war for my body. My soul claimed long ago by the blood of the Cross, Satan was there to steal my body and my story so that I could never touch another person with the power of my life redeemed. My pastor pleaded with me, Beloved, I urge you as sojourner and exile to abstain from the passions of the flesh, which wage war against your soul. (I Peter 2:12)

But warfare is infinitely more difficult than giving in to Satan. Therefore, my dear friends, as you have always obeyed—not only in my presence, but now much more in my absence—continue to work out your salvation with fear and trembling, for it is God who works in you to will and to act according to his good purpose. (Philipians 2:12-13)

I slipped again, and the pain was new for all surrounding me. In a solitary room, four green walls and a bed bolted to the floor with slots for restraints, without Bible or friend to comfort, just two red-eyed video cameras analyzing my every move, I praised God for His foresight as I had memorized Psalm 73:26 the night prior: My flesh and heart may fail, but God is the strength of my heart and my portion forever.

I leaned on Deuteronomy 30:19-20a: I call heaven and earth to witness against you today, that I have set before you life and death, blessing and curse. Therefore choose life, that you and your offspring may live, loving the Lord your God, obeying his voice and holding fast to him, for he is your life and length of days. However mindless and mind-numbing those days in the solitary room were, me pacing around the bed, stretching, doing push-ups, even singing at the top of my lungs in the corner ampitheater squeezed tight into what felt like a more private space - God was at work.

The day I chose life, when death was just another slice away, I sensed God knew my limitations, for He has promised that He is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, so that you will be able to endure it. (I Corinthians 10:13)

He stepped in to lift me up and fight for me. I felt like we were still flying low, but I could feel the wind in my hair, feel the flutter of the eagle's wing feathers as we floated above the battle and looked down at the vast sea of sorrow I had thought was so large. Now so little from the vantage point on His back. Yes, He seemed far away, as though He were the satellite in meaningless orbit just glinting in on the darkness of my days, as it says in Isaiah 45, In a surge of anger I hid my face from you for a moment, but with everlasting kindness I will have compassion on you.

But hope was not far off on a distant shore over an uncrossable ocean of tears.

 For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed,” says the LORD, who has compassion on you. “O afflicted one, storm-tossed and not comforted, behold, I will set your stones in antimony, and lay your foundations with sapphires. I will make your pinnacles of agate, your gates of carbuncles, and all your wall of precious stones. All your children shall be taught by the LORD, and great shall be the peace of your children. In righteousness you shall be established; you shall be far from oppression, for you shall not fear; and from terror, for it shall not come near you. If anyone stirs up strife, it is not from me; whoever stirs up strife with you shall fall because of you. Behold, I have created the smith who blows the fire of coals and produces a weapon for its purpose. I have also created the ravager to destroy; no weapon that is fashioned against you shall succeed, and you shall confute every tongue that rises against you in judgment. This is the heritage of the servants of the LORD and their vindication from me, declares the LORD. (Isaiah 54:10-17)

Torment fled from my nightmares, and terror from my flashbacks during the day. Turn to me and be saved, all the ends of the earth! For I am God, and there is no other. (Isaiah 45:22) I began to rest well again, enjoy my days, and smile. God gave me this verse on one of my last days in the hospital, as I prepared to move my new-found confidence back out into real life and beyond the cloistered walls of a monitored unit of the hospital. Restore our fortunes, O Lord...Those who sow in tears shall reap with shouts of joy! He who goes out weeping, bearing the seed for sowing, shall come home with shouts of joy, bringing his sheaves with him. (Psalm 126:4-6) Shouting for joy still sounds like a pipe dream but I do trust this God who once again showed up in my life in amazing ways.

It is well with my soul,

Thou has taught me to say...

To you, O Lord, I cry, and to the Lord I plead for mercy: What profit is there in my death, if I go down to the pit? Will the dust praise you? Will it tell of your faithfulness? Hear, O Lord, and be merciful to me! O Lord, be my helper!” (Psalm 30:9-12)

Excerpted from my gratitude journal, the weeks in the hospital, #312-541:
312. There is nothing in my room sharp enough to cut through skin
313. God only turns His face for a short time (Isaiah 54:8)
315. I am learning to ask for help.
317. I learned more about spiritual warfare now more than ever before
319. Being surrounded by the shields of faith of friends and family so fiery darts can't reach me.
322. What profit is there in my death? (Ps. 30:9-12)
324. A big bad biker dude borrowing my pink Bible to search for God
330. Scripture always ready on my tongue, even when I am a victim of the battle (thanks, Mama and God).
332. The gorgeous strawberry blond crowning the tired and lonely head of a teenager
335. The great, great God who stilled this anxious heart and fought for my life, sending terror far from me.
411. Souls won for Christ while I offer His words to them with my bleeding hands, spoon it into their chalk dry mouths and thirsty souls
537. Holding Mama's hand during my discharge planning meeting
538. Grandparents willing - nay, happy! - to help with my brood
539. Kristy always ready with a hand to hold and a prayer on her lips for me
540. The sweetest sentences I've ever read, from my Dad-in-law and Nate York
542. Sweet Sara picking me up with belly laughs and delight

When God seems far away

I remember the moment clearly, when last He showed His face. It was only the second time in my life I felt like I had seen Him. Both times I was wrung out, wasted, worn, weary. The first time by the confounding decisions I faced as a single woman. This day, by the suffering of life...Amy's illness, the newly worsened drudgery of my days as a mom, failures at school and work, at home as wife and mother and housekeeper.

So I flung myself like a rag doll across my bed, and my inner two year old showed herself in the hot tears and loud sobs. I heard the kids edging toward the closed door of the bedroom, but the sobs kept coming. And WHY? It wasn't as though someone had died or anything truly terrible had happened. I was undone by a whole list of small problems, that's all.

Where are you? I sobbed. If you care enough to number the hairs of my head and catch these tears in a bottle, why can't you make life easy? Why don't you show your face?

Slowly, the sobs ebbed away, and the whispers of the children grew deafening. I gathered breath to call them in, explain, apologize. Act like a grown up. I lifted my head up and propped myself up on my elbows with a sigh.

And then I saw Him.

In the texture of the wall, the random slaps of a trowel covered in green paint, I saw the Lion's head. I was struck dumb, like Lucy when she sees Aslan come back from the dead. There, in the texture, was the same face I saw in the clouds when I was 22. A sleeping Lion. The One I accused of being absent was there all along.

And there it remains, if I squint just right, the Lion on my wall, just between my dresser and the corner, in the dark and secret place that my eyes light on when they open in the morning and last look upon when I shut off the lamp at night. I still forget He's there, so often. But that does not mean He has left.

A prayer, from Nehemiah 1 & 2, for rebuilding broken lives:

Oh Lord, great and awesome God and the Father of our Lord Jesus Christ, who keeps His covenant of love with those who love Him and obey His commands (1:5).

Hear the prayer of your servant (1:6).

Remember, oh Lord, the promises You have made that You will give beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of despair, that we might be called oaks of righteousness, the planting of the Lord, for the display of Your splendor (1:7).

Oh Lord, I plead that I might fully comprehend the redemption You purchased through the blood of Jesus Christ, by Your great power and by Your mighty hand, that covers me and my whole story (1:10).

I resist, in the name of Jesus Christ, the lies the enemy has designed to discourage me and hinder the work of rebuilding. I determine in my heart to not only rebuild, but accept the help of others who want to come alongside. Restore to me the joy of my salvation, the fullness of a relationship with You. Please, let my joy overflow and may my life be a blessing to You and those around me (2:19-20).

Prayer from workbook by Open Hearts Ministry for small group study

Gray

The day glints raw and gray through the kitchen pane.  We read the last two Psalms for devotions this morning, the kids in slippers and me under wool against the cold filtering through the crack in the bedroom window.

There is a lot of singing in Psalms 149 and 150, a call of the peasant saints to battle.  

This morning, I am tethered in flight, my mouth full of rust instead of song.

As Katy pulls on pair after pair of jeans in the kitchen behind me...this pair too tight, and this one, too...my thumb rests idly on the keypad of the phone, the doctor's number so long memorized scrolling past my mind's eye marquee endlessly.  The checkbook is empty and much needed relief has been delayed...again.  Our favorite cat lies dead in a ditch, waiting for us to pull on clothes to go pick her up in a blanket and carry her to the woods to be buried.  The rattling of the Lake Superior rocks in the pails on the porch tell me Rosy already knows - too well for five - how to build a cairn over a grave.

Instead of the usual thrashing of soul, the grinding of teeth and squeezing hard of eyelids and the salty bitterness of tears on my upper lip, all today is raw and gray, like the pre-sunrise dawn air outside.  It isn't fall yet, it isn't summer either.  I sigh and turn back to the task behind me.

I lie awake;

I have become like a bird alone on a roof.

For I eat ashes with my food,

and mingle my drink with tears.

(Psalm 102)

Lamenting the loss of normalcy

Sometimes it just hits you in the gut like a ton of bricks.  There is nothing left in your life that is normal.  You watch, on Facebook, at church, through blogs and e-mails, as your friends and most of your family progress through a "normal" life, with fun pictures of holidays, updates about jobs, all the little details that make up "normal".  And you realize there is nothing left you can claim as normal.  I found a photo taken a few weeks before we lost normal.  What brings the tears the quickest is my children, my husband.  He looks so young.  I look at Caleb - just born - and Amelia, not even 2.  They don't remember "normal".  I see Katy's innocence.  I had never asked to learn to do laundry or cook a meal or clean a bathroom yet.  She has had to grow so fast.  And Rosy, so easy going and self-motivated and happy.  She just gets lost in the shuffle of the non-normal.  How can I make my peace with these losses??  How do I see this as a gift??

One of our last days of "normal".  Two weeks before my cancer was found.

Life was messy, and crazy, and hard work.  And wonderful.

Most cancer patients go through this, as their life gets ripped to shreds by cancer, its treatment and the treatment side effects.  An even smaller number continue to go through this for a long period of time.  That is where our family fits, once again in the statistical margins, defying the definitions and the predictions.  Even worse, it's not just cancer that has our number.  It's everything from infections to accidents, and "normal" life problems gone awry, like food poisoning and routine surgery or vaccinations.  Nothing goes "normal" for us.  Not in 2 1/2 years.

I walked into the bathroom today because I forgot.  I looked, for the first time, at the remains of the toilet.  It's not just broken.  It's shattered.  It stuns me, when I see what I hit and with what force, that I am typing right now.  That I have one hairline fracture and a small amount of bleeding in my brain and this will probably go down in life's history as a fantastical and horrific...yet short-lived...memory.  Just mire at the very bottom in the clear water of the rest of life.

I have to write it, this broken heart that longs for the day when I look back and realize no one has been in the hospital for several months.  The day when I realize that I have actually managed to care for my own children for a whole month without asking any relatives for help or spending any exorbitant dollar amount on childcare.  The day when I realized I've cooked every meal and swept every floor and wiped every nose and taken every picture and maybe even passed a test or gone on a real...restful rather than healing...vacation.

I know, deeper or truer than most, that life is a gift and every day, however flawed, is a blessing.  I know that my life is already a half-blown seed pod, and I need to be mindful of how and when and where I blow those seeds remaining.  But there is such longing to just be normal again.  I remember with longing a day I was frustrated because I forgot about dinner until 4 p.m. and had to rush to defrost something.  I look back at a day when I cried over the 10th poopy diaper and pleaded with God for an "out" from the drudgery of motherhood, and I laugh at my near-sightedness.  I recall a vacation when I fought with Aaron because of a difference of opinion about a leisure activity, and I wish I knew then what I know now.  I also know that, should God ever grant "normal" life to me again, I will forget all of this, most of the time.  I will take things for granted, and throw away blessed moments for the sake of my pride, and I will choose the wrong things to spend time on, and I will wound people and shock myself at how stupid I can be again so quickly.

A cross-processed photo from Mother's Day.

It is kind of like yearning for childhood as an adult.  This longing for something easy for a change.  It is like looking at photo and wishing you could cross-process it and bring out a new color that you know is there, you just couldn't grip it with your camera lens.  God says to give up my life to find it.  Okay, Lord.  You've got my life.  It's long been given up.  Please help me find the new one in the wreckage.  Please heal us.  Please rescue us.  And please let me never forget.

The dark path

But that was a long time and no matter how I try

The years just flow by like a broken down dam.

There's flies in the kitchen I can hear 'em there buzzing

And I ain't done nothing since I woke up today.

How can a person go to work in the morning

And come home in the evening and have nothing to say.

Just give me one thing that I can hold on to

To believe in this living is just a hard way to go
~John Prine~

Searching.  I am sure I have questions answered, so positive I practically skip instead of walking.  And then, in the darkness of a new time of testing, I turn my ankle in the same holes.  One minute, I have the clearest sight and surest perspective, as a worshiping woman confident in her faith.  The next, I am blinded by my ignorance and my tears as I struggle with the weight of the world and wonder from where help will possibly come.

Last week was Amelia's worst week.  I was suffering the worst heart rhythm issues I've had since last summer, and it was demanding my attention so that I might employ the limited means I have learned to prevent major catastrophe.  And I failed my comprehensive exam in my doctoral program.

I've been told that the testing and the agony and defeats are all signs that I am on the wrong path.  That the spiritual path planned out for me is a smooth one, with only an occasional divot...not like this one I am on, riddled with dents, rocks, and sticks on which to stumble.  I used to picture my "life path" as a mowed path through one of those ethereal forests I read about in books.  A smooth path, perhaps a short growth of grass, clover or wildflowers.  Filtered sunlight dappling the landscape.  Bird song lifting the spirit as I danced and twirled through the life God planned for me.

This place is very different.  It is a real forest.  The path is just a footpath trod by a few before me.  The thick underbrush hides the stones on which I turn my feet.  I constantly bend to push the branches away from my face.  The air is thick and close, and the sun shines through only rarely.  The light is a strange, dark and hallowed green.  There are thorns that scratch my legs, and the trees and brush on either side grow so thick they are impenetrable to my eye.  Am I navigating correctly?  Should I turn and go back, revisit some milestone to be sure I am still headed the right way?  What dangers lurk in the forest surrounding me?  I feel exactly how I feel coming home down the long valley behind my house, on a footpath just like the one I've described.  I have "peace that passes understanding".  If you are a stranger to my path, to my home, your only response to my sureness will be consternation.  But I am sure this is the path home.  I know it in my bones.  It doesn't matter a whit what the path looks like, nor how many stumbles, scratches or bumps attend my way down it.  It leads home.

There is so little I am sure of right now.  I am not sure how life will go for my sweet Amelia.  I don't know how epilepsy will affect her siblings.  I have no comfort for my tears at night.  I don't know how God is expressing love and mercy in my life right now.  I don't know with what clarity I will reflect back on this time in 5 or 10 years.  I don't know if the tens of thousands of dollars I've spent on a doctoral degree I have been called to study for will be wasted or not.  As my heart flips awkwardly in my chest, I don't even know what the next seconds hold.  Life is uncertainty, at best.

But I do know that the words of John Prine in the song I quoted above - however achingly beautiful and reflective of the struggle that is this uncertain life - are not my life's song.  I have found that "one thing that I can hold on to, to believe in this living is just a hard way to go".  Blessed is the man whose strength is in You, who have set their hearts on a pilgrimage, in the valley of weeping (Psalm 84:5-6).  God - the one who "will be who He will be" - the one I cannot understand...He is my one thing that I can hold on to.

In the morning, when I rise

Give me Jesus.

You can have all this world,

Just give me Jesus.

When I am alone,

Give me Jesus.

And when I come to die,

Give me Jesus.

Take time to watch this video. She says it better than I.

To sleep: perchance to dream

Whether 'tis nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles, and by opposing end them? ...to say we end the heart-ache and the thousand natural shocks that flesh is heir to, 'tis a consummation devoutly to be wish'd. ~ Hamlet, Act III, Scene I

A few weeks ago, tears sprang to my eyes as I realized that only cat tracks walked up to Echo Woods. Each chapter of suffering is eventually closed, and a new chapter opened. The winter months have brought the realities of suffering with my ill child, first the fury of adaptation to acute illness and now the slow lingering embers that occasionally spark to life and spur us to new realization of what chronic illness means in our home. I had meant to go sit by Teddy's little cairn this winter, process the loss of that babe, try to come to grips with what God has done in my life because of those excruciating moments in November. Instead, the path to that cairn was paved by the kitten, a lonely one way track past the place I meant to pray and learn.

The warming sun brought us out in a flurry of activity when Amelia was better after her latest spinal tap. We tramped through woods, checking sap buckets. We skipped down the road, laid bare by the first warm rays in months. We stomped in mud puddles that were more ice than water. And finally, in the last burst of energy before we headed inside for hot chocolate and long, deep sleep, we walked up to his grave. Laid human footprints in a wide swath to and from that spot we meant to call sacred.

The sun glinted through the frayed ends of the ribbon from the bouquet we laid on top of the stones. Everything about the place felt forgotten. The virgin blanket of snow had turned to ice crystals on which we slipped and fell, as the melting snow from four hills descended upon the little ledge where pets and babies sleep beneath the drifts. I felt something ring hollow as I stepped into the clearing, the three girls tramping past to visit Climbing Maple Tree for the first time in months, Caleb plunking down stolidly on the little stool after the long trek up the hill. I walked over and tried to find the pile of stones we left there last November. Buried deep, it took a few minutes of frantic digging, a few tears falling on my mittened hands.

The flowers were frozen, not a hint of decay. Just as green as when I laid them there. The stones were wet with the spring run-off cascading beneath the snow and down the valley. It was just a brief moment, me on my knees with the snow soaking through. Me on my knees still in consternation, still in pain, still in longing for the home to which this dear babe was called. Soon enough, the children descended again, each plucking a stem of leaves from the bouquet on Teddy's grave. Waving them like banners back down the hill, where we plucked moss off a tree to further interrogate indoors, stuck fingers in wood-pecker wounds on the maples, gathered sawdust. Their voices rang through the clearing, dispelling the grief that hung there, shrouding this place, in my moment of peace.

We walk from one sorrowing place to another, from one grief to the next. I wonder sometimes when all of this - cancer, death, illness, brain damage, bad news upon bad news - will come crashing down. I wonder how strong the beams of this house of faith really are, and know I will soon know in ways I never wanted to. As for me and my house, we will serve the Lord. (Joshua 24:15) It was written on the door frames before the walls went up. It is written now in the entryway. We proclaim it now, proclaimed it then - but did we know then what it meant? Did we know it meant this sacrificing, sorrowing, softening, sojourning, sinning, sanctifying, satisfice, scenographic discovery of souls and faith and pain and joy? I remember learning this lesson in miniature as a teenager coming to grips with all that my decision to believe God entailed: as C.S. Lewis wrote in The Problem of Pain,

The great spirit you so lightly invoked, the 'lord of terrible aspect', is present: not a senile benevolence that drowsily wishes you to be happy in your own way, not the cold philanthropy of a conscientious magistrate, nor the care of a host who feels responsible for the comfort of his guests, but the consuming fire Himself, the Love that made the worlds, persistent as the artist's love for his work and despotic as a man's love for a dog, provident and venerable as a father's love for his child; jealous, inexorable, exacting as love between the sexes.

Yes, back then, I came to grips with the fact that I had so "lightly invoked" the Creator of the universe; He was inexorably interested, involved, and inherent in my life from that point forward. Now I come to grips with a new level of consequence to that decision. I learned long ago that I could neither run nor hide from an omnipresent God. I learn now that I can neither run nor hide from His sanctifying hand in the circumstances of my life - that He will offer me my cross, again and again. My reaction to my cross will not erase the heaviness of it's burden on my shoulder. Only by casting the care of it onto His almighty shoulder will my burden be lightened. If I choose instead to cast it on the ground and run into the darkness that is all life where His face does not shine, I trade the million small, shared sufferings of sanctification for the living death that is life without Hope.

Nothing is inexorable but Love. If the man resists the burning of God, the consuming fire of Love, what sick dismay shall then seize upon him! For let a man think and care ever so little about God, he does not therefore exist without God. God is here with him, upholding, warming, delighting, teaching him - making life a good thing to him. God gives him himself, though he knows it not. When the man feels himself abandoned, hanging in a ceaseless vertigo of existence upon the verge of the gulf of his being, without support, without refuge, without aim, without end - for the soul has no weapons wherewith to destroy herself - with no inbreathing of joy, with nothing to make life good. Then will he listen in agony for the faintest sound of life from the closed door; then, if the moan of suffering humanity ever reaches the ear of the outcast of darkness, he will be ready to rush into the very heart of the Consuming Fire to know life once more, to change this terror of sick negation, of unspeakable death, for that region of painful hope. Imagination cannot mislead us into too much horror of being without God - that one living death. Is not this, "to be worse than worst, Of those that lawless and incertain thoughts imagine howling?" ~ George MacDonald, The Consuming Fire

Here I am, in this place of "painful hope". After these thoughts, these images, flooded my consciousness a week and a half ago, I was plunged headlong again into the trial of Amelia's continued illness. I find that the suffering of the loss of my babe is but a wave on an ocean of suffering, and here I am cresting another wave, another grief. It is overwhelming, to see the "whelming flood" of suffering that intervenes between this point of my life and the other shore. Only when I grasp blindly, tightly, His covenant, His blood - then can I wash through these waves without sinking.

His oath, His covenant, His blood
Support me in the whelming flood
When all around my soul gives way
He then is all my Hope and Stay

Unanswered prayer

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands that shaped the world
Are holding me, they hold me still

~ Your Hands, J.J. Heller ~

The bacterial culture done on Amelia's spinal fluid last week grew a particularly rare anaerobic bacteria, Propionibacterium acnes, on Wednesday, 5 days after the fluid was removed from her body. This bacteria is a common skin bacteria, and usually only causes meningitis or encephalitis in children with hardware in their brains (VP shunts) or post-neurosurgical patients. However, there are a few cases in otherwise healthy children, and most of them are in children who recently had otolaryngological surgery (ear/nose/throat). It is a form of chronic meningitis, with a 2-12 week onset involving severe headaches, nausea, weight loss, double vision and eye tracking abnormalities, and increased sleep, and, very rarely, low-grade fevers. Amy has every one of those symptoms. She is getting worse every day again, as the pressure builds up around her brain.

The problem is that the pathologist who found the bacteria and the infectious disease doctor who was called about it (neither of whom know Amelia or any of the details of her case) are calling this a contaminant. Not a real infection. Her neurologist tend to agree because it would be "so rare" for a child without brain hardware or implants to have this type of infection. After many hours on the phone and internet yesterday, and finally some encouragement from our primary care doctor, Aaron and I took Amelia to the ER at the U of M last night. They admitted her but didn't treat her, and discharged her today with no treatment other than steroids.

To say I am beyond frustrated is probably the understatement of the year. It feels as though we've finally found an answer to what is wrong with this precious girl, and instead of treating her, we are disregarding it. I feel helpless, hopeless, and very, very alone. It seems ridiculous that we should wait for a Monday appointment with her primary care doctor (who probably can't help anyway), her appointment a week from now with the ENT surgeon, who will check the nodules on her vocal cords, which I am sure remain, and another appointment 6 weeks from now with the neurologist. This little girl is not recovering like she should. But what am I supposed to do??

Fear is the hardest emotion to hand over to God. It's rooted in pride, really - what I am really saying is that, if I were only allowed to, I could change the date of my daughter's death, or her eventual recovery or permanent disability, by my knowledge, will, drive. That's simply not the case. I really have no more idea than the neurologists - with the exception of a healthy dose of mother's intuition - whether antibiotics are the necessary treatment in this situation. But I am afraid. I am afraid for Amelia's life, I am afraid for Amelia's personality, behavior, intellect, motor skills. What if we are missing the very key to this entire mess by giving in on this issue? Yet, what more can we, as mere parents?

Amelia was given an orange bear at the ER last night. From Hugs Across America. In the tag, in a child's scrawl, it says "God will heal you". So, at the end of the day, eyes burning from reading research and heart breaking and mind aching, I cling to that. In childlike faith. When everything else falls apart, that remains.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”

Whacked

Remember the game Whack-a-Mole? I feel like the mole. Every time I stick my head out, it gets beaned.

Just in the last few days, drive to town: WHACK. Car dies. Work on your marriage. WHACK. People fail. Go to your cancer appointment with hope. WHACK. You still have cancer. You crushed down old memories and stubbed out the pain in a pile of ashes. WHACK. Memories never die.

When I am about to drift out into the abyss, when the Rock that is the object of my faith seems like just another iceberg in a rough sea, something has to tether me. This day, it was my daughter's hand. She - innocent, eager, trusting - tethered me, bitter, worn, weary. As the King says, I can guarantee this truth: Unless you change and become like little children, you will never enter the kingdom of heaven. (Matthew 18:3) As she looks up at me, cherishes me, wonders at me, and wants to be like me, I simply cannot utter the words that come rushing to my lips...anger, bitterness, irritation, disbelief. Where is God's mercy, where is hope, where are promises and blessings? I'm not sure, but I'm not going to destroy her hope along with mine.

Satan composes a broken Hallelujah that seduces.

My word for 2010 was abide. Stay, remain, to wait, pause, delay; to sojourn, to endure, sustain, submit to; to tolerate; to suffer for. I guess this is where the rubber hits the road, right off the bat in February.

Since my words are so corrosive today, I will leave it at this. I found this encouraging. A bright spot in a dark day.

When darkness fills the valley

Fear and dread strive deep within us

But our burdens soon will be lifted

When these old homes turn to dust

~When He Calls, Emmylou Harris

Dancing in the rain

As I watched them walk out the door ahead of me, waiting for the perfect shaft of light to illuminate girlhood and infancy lilting through the sunset and out of the cavernous old barn, a million old emotions flooded back. That moment...watching someone I love dearly walk off with my son, facing forward toward the beauty and possibility that is life outside the cavern...I remember the moments I spent watching my kids dance in a lamp lit living room in November. Isolated, shivering, standing in the dark, surrounded by the eerie loneliness of the sounds of city nightlife. Feeling my life slip like so many grains of sand through an open palm. The glass shut me out, just like the length of that barn floor did. Being an outsider is never pleasant, especially when your heart is heavy with worry.

That is cancer. I know it, as well as I know the sounds of blood pressure echoing through the earpieces on my stethoscope, or the thud and whoosh of blood flowing through the chambers of a heart, or the tidal roar of air sucking into empty lungs to swell and then overflow the iron cage of ribs surrounding this wave of life that is drawn in without thought. I know cancer is a creeping, murky shadow of reality that seeps into joys and pleasures, and devours hope and faith almost without sign. I knew someday a radiology tech would put his instrument on my neck and pause for just a few minutes too long. It happened once before, I knew it would happen again.

But I still wasn't ready. I wasn't ready when I sensed the tension in the room. I knew before I looked up at the screen that I would see a round black hole where hope and resolution should have been found. Instead, in the crackle and pop of electronic noise, I heard the slow sobbing of a requiem for a dream. As I wordlessly walked out to the waiting room, fears swelled up where tears should have. Cancer: of the thyroid this time, or the parotid gland? What did it mean when a radiologist came in, suit coat flapping as he hurried to the equipment, and scanned my neck himself? What does "wait and see" really mean to a cancer patient? I suspended disbelief. I suspended belief. I hung, suspended, for two days. Suspended in reality, suspended in nightmare, suspended in prayer, suspended in the solace that was sleep.

The next appointment. A cardiologist. He informs me my heart failure is worsening, that my pulse is continuing to slow. That a pacemaker is indicated. Sends me to see a "heart failure" doctor. More fear, more tears locked in dry eyes, more words closed in a stinging throat. More suspension. I waited for Wednesday...five days. Eternity? Waited for suspension to drop me with a thud back into the dirt floor of cancer's reality.

The tide began to turn on Saturday. I found an organ. I've been praying for an organ for a year and a half. A blues organ. Preferably a Hammond B-3. To play at church with the band. Just something fun - it's not like I was praying to be cured of cancer. I have a hard time whispering those words in tense, desolate quiet with God: but an organ is something I can beseech of Him. So I did. And I found it. Free, on the curbside. Passed it the first time...our car was too small, I was sure it didn't work anyway. Excuses, of course. Excuses that might have undermined a Savior's gift for me. But instead, another nudge: my aunt asked if we wanted to go take a look at "that free organ down the street". I agreed, hesitantly. Out of boredom, to tell the truth. The organ worked: it's a Hammond A-100, a rare and beautiful stepbrother to the mighty B-3, with the same sound, the same technology. A gift worth thousands of dollars, just sitting by the curb on a Saturday afternoon in rural Minnesota. Okay God, I thought, that was pretty cool!

I went home. Checked my e-mail on Sunday. In my daily digest from Freecycle: "free organ". Okay God, I thought, that would be pretty amazing! I sent a message to the giver. The organ doesn't work, he said. Aaron said, Let's give it a chance anyway. See what God can do. Drove an hour to pick it up. Plugged it in the back of the truck. Figured we may as well see if it works before we lug this baby inside! It's a Hammond M102, the "Baby B". The same technology, only slightly smaller cabinet and half as many bass pedals. I heard the swell and cry of the pipes from inside: all Aaron had to do was read the manual. The second organ works perfectly, too. Pray for a year and a half, and sometime a miracle comes out of nowhere: a piano for home, a piano for church. No sweat for a big Jesus, apparently!

Preparing for my appointment yesterday, that deep soul work that nothing can hasten, I sat at the keys and got used to playing with my feet. Pure joy. I felt God shouting this time (usually He whispers - or am I just deaf??): See, child, I know every detail of your heart. I know why it beats slow sometimes and fast others. I know why you faint. I know every hair on your head. I know your going out and coming in, your lying down and standing up. I know the hour and day of your death, and I am waiting here to welcome you home. Cancer, schmancer. This is God speaking, the God who throws two free organs at you in two days! This is the God that created sun, stars, heavens and earth. Babies, blessings, husbands, farmhouses, gourmet food, summer songs of crickets and frogs, winter refrain of birds and snowflakes. How could you doubt me? Trust me, because I am always here. Listening. Loving. Lavishing.

So in I walked to two appointments today. The first was very hard: no answers are clear, and when that happens...well, doctors start to think maybe the reason for your problems isn't physical. It isn't, I want to shout! It is spiritual. God allowed me to feel this, to be created this way. He hedges me in, and He goes before me. Who are you to say it is impossible for me to faint as much as I do? Who are you to question what is so abundantly clear in your data? Question he does anyway, this doctor. Infuses the whole care team with questions without answers. Next appointment: the lump in my neck is okay, for now. Stable, hasn't grown since last September. The question remains, why is it there? Why didn't the iodine kill it? It is a nodule, and it looks like cancer, but it doesn't suck up iodine and it doesn't show on whole body scans. So there are lots of questions about how best to monitor it, or if it should be biopsied or removed. I'll learn more on Friday when I visit my oncologist here in Eau Claire.

The neurologist is close to concluding, to handing me a diagnosis. In her opinion, I may have orthostatic intolerance, a condition on the dysautonomic spectrum of illness. Hard to treat. But at least a diagnosis. I might be best off cloistered in my farmhouse, taking some herbs now and then, continuing with my country doctors here in Eau Claire. Tonight I go to sleep, monitors humming away for the next 24 hours. Still beseeching God, this time for an answer instead of a Hammond organ (or two!).

And remembering that sweet, sweet sound of bluesy perfection joining the crickets and frogs in an Indian summer lament/praise for a God who is holy, tender, and extravagant and a world that is harsh and si bon mais si lassant.

Outside looking in

Morpheus: This is your last chance. After this, there is no turning back. You take the blue pill - the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill - you stay in Wonderland and I show you how deep the rabbit-hole goes.
~ The Matrix (1999)

I had a painful preview tonight of what I sometimes imagine it will be like to be dead. I had a wonderful date three feet across a table from my husband. We talked about the kids a lot. I followed him back to my aunt and uncle's house, where the children were, and quietly parked my car, lights off, to watch them through the window. Those ten minutes spent watching their dear little mannerisms and hearing little whispers of their laughter and gay voices through the pane of glass that separated us were exactly what I imagine it would be like to be dead...exquisitely wonderful and exquisitely painful at the same time. To see and not touch, to hear and not feel. To be an observer in what "should" be my life. It was more than I could bear, and I left in a rush for a little Indian restaurant on the corner, where I'm sure they thought I was a little insane, rushing in with tears streaming, frozen to the core and begging for a cup of hot tea (a cup of cheer, the real, literal soul-cheering kind, is what I really desired at that moment!).

I wish I could leave it at that, that my soul didn't force my brain to go deeper into the issues that underlie this entire vignette and make it so exquisitely painful. The true issue is one of the heart, one of selfishness. For I have selfishly absorbed that entirely humanistic idea that my life is my own to live, my deserved right. In truth, it is a gift, each day and each hour. In truth, God would faithfully provide if my death comes about while my children are still babes. For it is not through me that they consist...it is through God in heaven. In truth, my death will not be tinged by these human sorrows. Although it is incomprehensible to me now, my death will not be the script of It's a Wonderful Life, for although each of us adds a remarkable human thumbprint to the existence of others, that is all it is. It is the spark and thumbprint of the divine that makes our lives truly remarkable, and it is the mercy of the Almighty that promises a death of joy instead of one of aching loss...for I will turn mourning into gladness, I will give them comfort and joy instead of sorrow, promises our God (Jeremiah 31:13). I do not die to cry over the loss of my life, but to rejoice in the life I have gained because of the death of my Savior! What a full circle we come!

It teaches us to say "No" to ungodliness and worldly passions, and to live self-controlled, upright and godly lives in this present age, while we wait for the blessed hope—the glorious appearing of our great God and Savior, Jesus Christ, who gave himself for us to redeem us from all wickedness and to purify for himself a people that are his very own, eager to do what is good. ~ Titus 2:12-14

There'll be no dark valleys when Jesus comes...
There'll be no more sorrow when Jesus comes...
There'll be songs of greeting when Jesus comes,
to gather His loved ones home!
~ William Orcutt Cushing, 1823-1902

The song of my heart tonight can only be captured in my absolute favorite Italian aria, Nessun Dorma. I have included it here sung by the untrained and absolutely beautiful voice of the unlikely Paul Potts. Here are the words and the translation:
Nessun dorma! Nessun dorma!
Tu pure, o, Principessa,
nella tua fredda stanza,
guardi le stelle
che tremano d'amore
e di speranza.
Ma il mio mistero è chiuso in me,
il nome mio nessun saprà!
No, no, sulla tua bocca lo dirò
quando la luce splenderà!
Ed il mio bacio scioglierà il silenzio
che ti fa mia!
(Il nome suo nessun saprà!...
e noi dovrem, ahime, morir!)
Dilegua, o notte!
Tramontate, stelle!
Tramontate, stelle!
All'alba vincerò!
vincerò, vincerò!

Nobody shall sleep!...
Nobody shall sleep!
Even you, o Princess,
in your cold room,
watch the stars,
that tremble with love and with hope.
But my secret is hidden within me,
my name no one shall know...
No!...No!...
On your mouth I will tell it when the light shines.
And my kiss will dissolve the silence that makes you mine!...
(No one will know his name and we must, alas, die.)
Vanish, o night!
Set, stars! Set, stars!
At dawn, I will win! I will win! I will win!