Pacemaker is in!

My pacemaker implantation is complete and I am feeling quite well.  The medications are still affecting me, so I am making this short and sweet.  More later!  Thank you for the prayers.

Pacemaker day

"Accept life not as our reward but as our schooling."  
Twinkle's comment on my journal entry yesterday

Today at 10 (CST) a very skilled doctor implants a little metal box in to my chest,
and threads wires into my heart.  All to keep it beating properly.

Today I enter a house on whose doorstep I've crouched, reluctant,
for over a decade.  "Restore to me the joy of your salvation,
and uphold me with a willing spirit."  (Psalm 51:12)

Plans, plans

But every heartache will create space that I alone can fill. And I will. You will learn to wait in Hope. 'My soul yearns, even faints, for the courts of the LORD...Blessed are those...who have set their hearts on pilgrimage. As they pass through the Valley of Baca, seasons of weeping, they make it a place of springs.' (Psalm 84:2, 5-6) ~ from 66 Love Letters by Lawrence Crabb (see sidebar to purchase book)

The verdict is in.  My oncologist plans further testing based on my tumor marker, which will be back on Thursday - probably a PET scan and a radioactive iodine scan on the same day to try to detect whatever small tumors must exist in my body, creating this thyroid storm.  And tomorrow I am scheduled to get a pacemaker.  I have fought the pacemaker idea since 1994, and feel happy that I have bought 16 years of freedom from it with faith in God's hand.  I have never had peace with the idea before.  Today I do.  Having the pacemaker implanted will allow the doctor to attempt to treat my potentially life-threatening high heart rates with a medication instead of a surgical procedure.  This is so much more preferable to me.  I had a horrible experience with my last surgical procedure for the same problem (electrophysiology study and cardiac ablation), I will forever cringe at the idea of undergoing it again.  The pacemaker seems like the most conservative route to treatment of this heart problem that has plagued me for so long.  I have high hopes that it will provide great relief, as it did for my Grandpa and several other family members with similar symptoms.

Once I find out the time for the pacemaker implantation, I will post it in hopes that you will offer up prayer for my safety and witness during that procedure.  Thanks to all of you who read here for holding hands with me on this hard, exhausting and beautiful journey.

I was reminded once again today during my devotions that it is not the doctors in whom I am putting my trust. I trust God to give them wisdom and skill and to provide for me in whatever manner He sees fit.  "Put not your trust in princes, in a son of man, in whom there is no salvation.  When his breath departs he returns to the earth: on that very day his plans perish.  Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God, who made heaven and earth, the sea, and all that is in them, who keeps faith forever." (Psalm 146:3-6)

Growing in rocky places

This little fern caught my attention, amongst the huge boulders of basalt on the North Shore, clinging to some little tidbit of nourishment or vein of soil beneath them.  I am the fern in the rocks.  For the past few days, I've been battling what I assumed was heart failure returning (due to stress, I surmised).  I was quite swollen by today, with no sign of making progress with my usual herbs, so I called my doctor - the regular one.  He told me to go to the emergency room.  My reaction, of course, was "Pshaw!  Go to the emergency room because I am a little swollen??  Of course not!"  So I called a second doctor, and he said the same thing.  I reluctantly agreed to go...after working on my paper for another three hours.

When I got there, I expected something to remove the excess water and a quick return ticket home.  Instead, I am admitted.  Lab work shows my thyroid hormones are sky high, despite reductions in my medications at the previous two clinic visits.  This means a probably return or resurgence or increase in cancer, something like that.  And that is what is causing the swelling, and the odd heart rates, and my intense impression that I might die if I sit outdoors in the heat for more than a few minutes.  I received some medications to control the chest pain I was having, and now I am waiting for more tests until tomorrow, from both my oncologist and my cardiologist.

When we dream, it's of the wind, blowing cold and hard
When we wake up we still live in a house of cards
~ Mary Chapin Carpenter

Precious stones

Correct me, O Lord, but in justice:
not in your anger, lest you bring me to nothing.
Why is my pain unceasing,
my wound incurable,
refusing to be healed?
Will you be to me like a deceitful brook,
like waters that fail?
Therefore thus says the Lord:
"If you utter what is precious, and not what is worthless,
you shall be as my mouth.
For I will satisfy the weary soul, 
and every languishing soul I will replenish."
~ Excerpts from Jeremiah 10, 15, 31 that have watered me this past week ~

My children are the progeny of generations of rock pickers.  The ancient beaches of Lake Superior, where the hearts of stones wash up and glitter on every strand, agates born from lava and metamorphic rock that has undergone intense heat or pressure - as we've walked these beaches over generations, we've learned to see the gleam of the semiprecious stones among the common ones.  These little pebbles form in the veins or centers of those rocks that have undergone the worst possible conditions, and are the sparkling jewels of the Lake Superior shores that we eagerly hunt for each time we visit.  Here Rosy is running to me with her find, a blazing red Binghamite pebble.  We keep a bag on hand for the ordinary rocks, the grainy granite, quartz-dotted basalt, red pitted rhyolite and  smooth, worry stone slates.  A bottle or jar holds the really precious ones - the agate hearts, the agate shards, quartzes of all colors, jasper, green epodite, and sometimes even geodes, flint, tiger's eyes and fool's gold.

I see reminders everywhere that disaster breeds strength, walking through fire polishes new beauty, hardship and cold and sorrow reap reward.  I see it in the jar full of rocks created by the destructive heat of a lava flow that ripped through the heart of this land I love.

I see it in the ditches full of wildflowers - yellow, white, purple, pink, orange, blue, crimson.  We live in a land where there is a winter.  Where the ice freezes us nearly to the bone and the chill of the winter wind drains the strength from your blood.  Yet the blanket of snow is what waters the earth for this beautiful summer of glorious beauty.  Without freezing deep and storing up water on the surface during the famine time of winter, there is no bountiful harvest.  In the desert, water in any form is precious.  Here, it is plentiful - but sometimes frozen.  Sometimes we have to wait - have faith - that spring will someday come and the fields will bloom again.

Amy has had two more days of clustered seizures - just the partial kind, but, to tell the truth, those are the more difficult to deal with on a day-to-day basis.  She is transformed from a low-needs, creative, exuberant, exploring almost 4 year old to something like an infant, but an infant with complexities and confusion mixed in. Mothering is is is deep grieving to watch her during these times.  Like icing on the suffering cake, heart failure seems to be returning to me after a long hiatus of almost 10 years.  Yesterday I gained 10 pounds, and today I gained 10 more.  The heaviness of the extra water that my heart cannot drive through my kidneys is a burden.  The heaviness in my chest brings fear as well as burden.  I struggle to know which doctor to call...when to fit it in...whether or not to accept treatment.  Burdens, burdens.  Yet even that word - "burdens" - reminds me of an old tune that soothes and uplifts.  I am reminded that winter brings wildflowers springing by the billions from the newly thawed ground; and fire burns beauty in veins of color through the hearts of stone.  Someday - be it here or heaven - our wildflower summer will come.  Someday we will see the beauty wrought in our human hearts - these hearts that were stone before Life breathed into them - by the fire and pressure of this time of testing.

Days are filled with sorrow and care,
Hearts are lonely and drear;
Burdens are lifted at Calvary,
Jesus is very near.

Cast your care on Jesus today
leave your worry and fear
Burdens are lifted at Calvary
Jesus is very near

Troubled soul, the Saviour can see,
Ev'ry heartache and tear;
Burdens are lifted at Calvary
Jesus is very near.
~ hymn by John Moore, 1952

Weekends are for water

Only a child

The month of May: 25,112 visits to my blog from 71 countries.  I am deep in Jeremiah again and as I shrink back in abject terror from the numbers pouring in, I remember God's words there...

"Ah, Sovereign Lord," I said, "I do not know how to speak; I am only a child."

But the Lord said to me, "Do not say, 'I am only a child.' You must go to everyone I send you to and say whatever I command you. Do not be afraid of them, for I am with you and will rescue you," declares the Lord. (1:6-7)

This is way bigger than my cancer, or Amelia's illness, or my faltering faith. I've prayed for weeks that God would give some sign that something big is going on, to comfort my aching heart.  Trust Him to speak through statistics, my favorite language.

Up North

Some places just run through your blood - whether or not you've ever been there before, you get there and something in your soul screams recognition.  Lake Superior is our ocean, the closest expanse of water we can easily drive to, something of the rhythm and serenity and unchangeability of the waves beating against shore soothing the most tousled emotions.  We went, for a brief 24 hour visit, to see Grandma and visit the birthplace of me.  As much as the fields and rolling hills of Wisconsin are home, as much as I love my yellow farmhouse and the simple wildflowers that burst everywhere this time of year, the North Shore is a birthplace of a sort that cannot be replaced.  The Prairie is this way for Aaron...the Lake this way for me.  Our kids are bound to become the stalwart sort, whether they get the Prairie or the Lake genes.

As we returned to civilization, we noted how perfectly our little trip fit with our homeschool unit - navigation.  We sang a little song we wrote for our unit study, over and over as we made our way across the long miles home...
The sun rises in the east,
the sun sets in the west,
it's COLD when you go up north,
it's HOT when you go down south!

...a perfect reminder that, through all the fog and the storms and the wrong turns and the blind paths, the Maker who set the sun and planets in motion is ever attentive to our hearts and longs for a friendship that surpasses all others.  He set the sun to rise in the east and set in the west, a sign for all time that He is there, even when He seems far away. "As long as the earth endures, seedtime and harvest, cold and heat, summer and winter, day and night will never cease." (Genesis 8:22)

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.

Fresh love/vintage love

Snapping memories onto indelible film.  A camera lens: a window into other worlds of emotion.  She squints through the viewfinder and her subjects snuggle, oblivious.  New love: expectation, promise, passion yet unfulfilled, a dawn of something, a birth, poised to become one.  That new love is so sweet - buds on the grapevines, juice in the glasses, sugar on the lips and joy to the heart.  Weddings have always struck me as only important to those being wed - for others an excuse to visit and dance.  A social custom that I've found rather baffling - a custom that frightened me as I approached the age when such a thing might happen to me.  Yet here they were - this couple - a rockstar and an artist, the life of the party and the introvert, standing submissively before the lens in those hours I observed this tableau.  My dear friend, the photographer.  Other dear friends, the subjects.

The photographer ran out of film.  Her husband - assistant - rushed to her, new camera at the ready, more film in a pocket, anticipating her wishes and fulfilling them before they were spoken.  Mature love: covenant, passion fulfilled, midday in full sun, dreams fruited, two-become-one.  Actions of love like grapes ripening on the vine, the promise of the wine still to come, the fruit visible and the air scented with it.  The sweetness of the juice that was new love has ripened to wine, with undertones and topnotes and layers of flavor that weren't there when it was fresh-squeezed.  I remember learning Greek words for love as a child, sitting silent in church with my King James Bible on my knee and my pen racing over notebook pages: eros (έρως) or philia (φιλία) on the one side - the human side.  Natural, emotional, discriminatory, conditional, pleasurable, delightful, failing human love.  On the other side, agape (αγάπη) - the learned, volitional, unconditional, precious, esteeming, prizing, "in spite of", unfaltering love.  Agape is the love I only had a hint of on my wedding day.  My wedding day was mostly eros - passion - with a sprinkling of inkling that agape would necessarily come as the days passed and we failed each other.  My wedding day was a willingness to embark on agape love.

What I see in this photo is willingness on one side and experience on the other.  One couple content to adore and experience physical closeness.  One couple serving, working together, esteeming.  I don't know what would have happened if the roles were flipped - the young couple behind the camera and those married for years posing in front of it.  But the beautiful juxtaposition of what it means to be married one hour or for more than a decade is such an amazing picture of how we learn love as we honor the covenant.

I never thought I’d get this old dear
Never had a reason to live so long
And the Lord’s been like my shadow
Even when I was wrong
No I never thought it would turn out this way

So sing with me softly
As the day turns to night
And later I'll dream of paradise with you
I love you and good night
~Anniversary Song, Katie Melua

Closing in

The walls feel compressive today.  Yesterday, I brought video footage of Amelia's seizures (all kinds - the partials and the full-blown twitching, the recovery, and the onset) to her wonderful doctor at Mayo.  He has diagnosed her with four kinds based on the videos: simple partial, complex partial, secondarily generalized and absence seizures.  He skipped all the intermediate drug options and went straight to Depakote, an old, strong anti-seizure medication that is highly effective.  I am on my way out the door now to pick it up and give her a loading dose.  He hopes to see results within 24 hours to the tune of fewer seizures.  She is at the brink of status epilepticus - the only ray of hope currently being that the seizures have been short, though many.

I failed my comprehensive exam for my doctoral program yesterday.  I am doing okay with the news.  I get one more attempt.  I deserved to fail.  I hope to get enough feedback to pass when I try again within the next two months.

I am feeling awed, bruised and silent before Jehovah ("I will be who I will be"); Abir ("mighty One"); Shaphat ("Judge"); Kanna ("Jealous"); Eben ("Stone"); Hupsistos ("Highest"); Pantokrator ("Almighty") God. (from The Names of God) In the last year, I have seen less of love and mercy and more of stone-like, uncompromising, jealous persistence to use me and my circumstances for my own development and that of those around me.  It is easy to feel crushed between the well-beaten ground of the world's ways and the Stone that is the God who created me.

A hymn for my sorrow

Yesterday, in the depths of grief as I watched Amelia sleep and sleep after 6 seizures by midday, I tried singing a favorite song for these times...Ginny Owen's If You Want Me To (if you like her stuff, be sure to check out her 2-disc set that's about to be released, including a song co-written by a young woman battling cancer). But that wasn't quite what I wanted to say to God. These words came instead, as I played some random chords. I decided to record it - something I rarely do. My kids will need to hear it someday when their own lives are hard.

I see you walking by with your carefree smile
I turn my eyes down in shame for my tears
Life has always been unfair but never so cruel
Why do others sleep in peace and I sleep in fear?

Years ago it was my own pain I felt.
Blessings have built a new kind of heartache
When it’s someone you love who cries in pain
And you wonder how much more you can take

Where is God, this God you proclaimed?
You run begging for help and only receive
Silence and sorrow and weeping despair
Faith becomes harder to find and retrieve

He says in the end that He’ll make it alright
And if heaven’s what matters, I know He is right
But when grief overcomes you this side of the grave
It’s hard to remember why you call yourself “saved”.

It’s all up to my choices in the moment of truth
Will I believe without seeing or turn from Your face?
Will I bear Your banner in a land of disbelief
And ignore the mockers who laugh at my faith?

When I cross over Jordan, and hand you my life
Remember those choices, please, won’t you, Lord...
Mention that time that I took the hard path,
Tell me that’s why there’s this jewel in gold.

~ Psalm 73, a hymn for my sorrow ~

You can read David's Psalm 73 here.

Becoming a "special needs" mother

I've been considering this whole idea of being the mother of a special needs child for about a year and a half now. As Aaron and I moved toward adoption of a baby with Down syndrome, I had a lot of questions to ask myself. I pictured myself in every imaginable scenario, and came to my terms with it. Felt comfortable with the idea.

And then one of my already-known, already-born, already-loved children developed a brain infection, and then damage, and finally seizures. For a week now, we've dealt with our first season of "clustered" seizures - more than 2 in a 24 hour period. Amy's had seizures while I'm driving down the road, slamming the truck into gear on me with her flailing feet. She's had seizures at VBS and pee'd all over nursery. She's had seizures playing outside, sleeping in her bed, laying in my arms, eating her breakfast, and in the bath. Every activity is riddled with new dangers and difficulties. What used to rub me raw with the sheer mindless routine of it - meals, diaper changes, baths, dressing and undressing these warm little bodies over and over again - is now not boring, but painful, difficult.

I've been stared at on the side of the road when I'm dragging her out the tailgate from the backseat of a minivan during a seizure (note to self: buckle seizure-prone children in an accessible car seat!). I've had to comfort her as she shivers, wet and cold, after being pulled suddenly from a warm bath. I've had to sweep chunks of bread from her throat while her teeth clamped and unclamped when she seized while eating.

This experience does not wring from me a cry of, "Why, God??" There are no words to the lament it wrings from me. What He created so perfectly - this intelligent, beautiful, personality-filled, sweet, hard-working, sensitive, and passionate baby girl with the lilt to her hair - has lain so limp in my arms this week. Her beautiful kalamata olive eyes are drab and unfocused, her throaty voice is so often simply repeating one word endlessly as her brain fires in a loop from which it cannot break free. To say my spirit groans for her losses is an understatement. To watch the beautiful become broken excruciating.

Many have told me they don't believe this will last. I pray that is true. The glimpses of Amelia's spirit have come so few and far between this week. During the music and dancing at Vacation Bible School, there she is, suddenly - the little girl we've all been missing, stomping to the music, and singing in a baritone scraped husky by the many, many times she vomits every day.

Where, Lord, are you today?
Do you see her stumble, head hitting timber
You say you are in every place
Where is your mercy here?
Do you hear my voice call, ragged?
Do you place a gold piece in keeping
as my sore knees bend again to clean mess
a piece of silver for every tear I'm weeping?

Rescue us before we drown in this river
of grief that flows from souls, lashes -
stand in the way of tragedy -
before it all once again crashes
as we tumble together through familiar pain.
She is broken, body, mind
But our souls are nearly empty
faith is elusive, suffering anger-lined.

Dare I compose a song
that asks questions I know have no answer?
There is nothing visible left
which to lay upon Your altar.
You told me once that when my words are gone
You groan for me and plead
for this broken, beautiful, besieged girl.
And so, I hold my creed.

Cover worn, pages torn.

The bandages that bind the broken
become more sacred after we bleed.


About five minutes after I posted the prayer request, we had success and were able to collect the sample and head home. On the way home, our Honda broke down twice. Luckily, Aaron was available to come follow us home in the truck and we made it the rest of the way. It was a long hard day. Thanks for the prayers.

Trouble at Mayo

We went straight from VBS to Mayo to get a bunch of tests done to try and determine why Amy is seizing so frequently. We're having trouble, though - they need a urine sample, and she is having so many seizures that I can never seem to catch one on the toilet (she goes in her pants during seizures). I have taped a bag onto her now (bet you can imagine about how fun that was!) and we're hoping she can go before the lab closes at 6. Prayers please?

Weekends are for weltering

wel·ter :: 1. a confused mass; a jumble. 3. to surge or roll, as on the sea.

Weekends are for serving old friends as they make new ties.

Weekends are for capturing joy moment by moment - deep in the heart and frozen on film.

Weekends are for rediscovering beauty in ordinary places.

They're for finding new friends.

And rediscovering old ones.

Amy (and, in the context of this writing, I should delineate that I mean "Amelia") had well over a dozen seizures in the last four days. I would have to consult the episode record for the exact count. For some reason, she isn't absorbing the seizure medication correctly. She's now developed "clustering" of seizures, with almost a constant simple partial seizure yesterday, punctuated by 6 tonic/clonic seizures. LOTS of clean up, LOTS of tears, and LOTS of worry for parents in new territory. Yet we are off to Vacation Bible School tomorrow in the morning...then on to Mayo in the afternoon for testing. Same thing Wednesday. A "in the area" (a.k.a. no 3 hour drives anywhere) day on Thursday. And back to VBS and Mayo on Friday. In between which I should be putting together a 30 minute presentation and preparing my defense for my comprehensive exam. Time to trust God again!

Never a heartache, and never a groan,
Never a teardrop, and never a moan;
Never a danger but there on the throne,
Moment by moment He thinks of His own.

Moment by moment I’m kept in His love;
Moment by moment I’ve life from above;
Looking to Jesus till glory doth shine;
Moment by moment, O Lord, I am Thine.
~Moment by Moment, Major Daniel Whittle, 1893

Yes, you can swallow upside down

...and other ways to say, "life goes on."
That should be the title today.

When I took these photos, I imagined some creative, helium-filled happy words about the joys and simplicity of homeschooling. It was the day we learned about the digestive system and I taught the girls about peristalsis. But life intervened, and I never wrote helium-filled happiness, all through a week without seizures and preparing for a long-awaited visit from old friends, and finishing work to meet deadlines, and doing the fall and spring cleaning I missed last fall, last spring.

We kept swallowing, through all those good days of hard work and elbow grease. Nothing seemed too terribly upside down. And tonight it doesn't, either - seem upside down, I mean. It's just a normal night. I can't sleep because the day was stressful and how else to process, other than to read or to write? Amelia had four seizures today. The day was full of poop, puke, pee, laundry, floor scrubbing, and long phone calls to doctors, labs and nurses. It felt oddly and uncomfortably like a 16 hour shift as a nurse. I jumped through all the same hoops I did then...without the resources, without the safe emotional distance. Tomorrow I am supposed to leave her with some college students I don't know well, travel 30 minutes to a rural town with no cell phone service...and be okay with that. Take a day off.

Somehow I don't picture that happening. Tonight, between artisanal local cheeses and my mother's fabulous peppery grissini and sips of Aaron's farmhouse wine, we talked too about death and loss and grief and dealing with disability, seizures.

What else do I say? How do I put this feeling into words? I can't really. Inside my skin somewhere is the very visceral memory of the 117 patients I sat with as they died. Babies, toddlers, children, teens, ushered to the very doorstep of heaven by parents who rent their souls in anguish that it is really, in the end, true...this distance between here and there, now us and them. "A close and unbreachable distance: witnessing everything and nothing." 117. I wrote every name in the black book and can recite almost all by rote, memories flooding in to fill the vacuum each name creates as I speak it, even silently. The texture and color of hair on pillows, the small voices, mannerisms and favorite things, all tied together with the ebbing away of that person into just the husk I rolled down to the basement in the dark of the night shift, every third florescent light lit, just enough to give the halls a spooky green glow and not enough to wash away fear.

Mine was a different anguish. Having just enough knowledge and tools at my disposal to sometimes help - the tug of putting technical skill to work while experiencing something so deep emotionally - trying to reconcile faith, in that moment, with something that seems so disastrous and so final. In the end, I chose to reconcile it. I face now my own child's illness. And I walked today at Relay for Life as a cancer survivor-slash-patient, with my four kids, and felt the energy in my limbs and the full turgor of my skin. Contrast it with the weak and dying I see around me in the survivor lap. To be in this place of vigor and youth, to see my daughter there too, yet to be brought back to memories so dark and final...

I've thought of writing up the 117 in a book. I even have a title, and a few chapters. The title usually comes last for me as I write, so when it comes first I assume the project is a failure from the get-go. Who reads depressing books like that - other than other depressed people? And I have nothing to offer them as comfort. All I harbor is a sweet potpourri of dried flower memories, of men and women, girls and boys who are long gone. I can't add much to their stories, as I didn't then either. I was just the watcher from the corner. The vital sign checker. Just outside the sphere of acceptable emotion. I squeezed my own tears in then - bottled them up for later (heaven, perhaps?).

Tonight, I ramble. Find comfort in another, similar experience, phrased more elegantly.

Breathe. Swallow. Repeat.

I wish for the night, I walk through the dark rooms and wish for the sleep that erases all. I hear the late night cricket song and wonder if he is singing a lament for the day past or the day still to dawn.

Prayers as Incense

Oh, the beauties of home-school! Lessons with half the kids in their pajamas, readings during which the teacher has an epiphany and the whole class goes running to gather supplies for an object lesson instead. Lessons with cousins along, just for fun. Lessons where your stuffed animals get to play the starring role. We read today about Abraham, in Genesis 22, destroying myths early. Ideas of a warm, fuzzy God come crashing down as we read: God tested Abraham, Abraham carried the knife, Isaac asked, "But where is the lamb for the sacrifice?"

We talk about Amy's encephalitis and the 5 days when we talked about the fact that she might die. I remember the moments so vividly - holding Katy on one side, and Rosy on the other, and talking about what the doctors were about to do in surgery, and the fact that Amy might always be different, or she might go to heaven that night. We had 50-50 odds that she would be with us the next day. The altar we were asked to tie her to was an operating table. The man holding the knife was the surgeon. But it was the same awesome, just, vigilantly pursuing God that tested us. The kids look into my eyes today, as we read Genesis, and they know that we have been tested, too. We talked it through - "Did Papa and Mama get angry with God, and curse His name, and refuse to believe because it was a hard time?" No. We said, with Abraham, "Here I am." We prayed, begged, certainly. And the angel said - in whispers - from heaven, Now I know that you fear God, because you have not withheld from me your daughter, your precious daughter.

But the lesson was not about trusting God through tough times. It was about the Lamb of God. Why a lamb? We read John 1:29, when John the Baptist sees Jesus walking toward him, and says, Look, the Lamb of God, who takes away the sins of the world. We talked about how tiny and helpless lambs are, how graphic the picture is when the red blood pours down the white fleece as the lamb gives it's life, over and over again through the Old Testament, a picture of the helpless, weakened Jesus, His blood dripping down the wood stake that held Him aloft for all to see as He washed away the sins of the world.

Finally, we get to Revelation. John is weeping because no one is found worthy to open the scroll he so desperately wants to hear read. The elder leans over to comfort him, and says, "Behold, the Lion of Judah!" The kids and I roar together, and picture how the Lion of Judah must look. What do you think of when you hear "lion"? Meek, mild, desperate, hope extinguished from dying eyes? Of course not. But that is what John turns to see.
Then I saw a Lamb, looking as if it had been slain, standing in the center of the throne, encircled...He came and took the scroll from the right hand of him who sat on the throne...and all fell down before the Lamb. Each had a harp and they were holding golden bowls full of incense, which are the prayers of the saints. And they sang a new song: You are worthy...because you were slain and with your blood you purchased men for God from every tribe and tongue and nation. You have made them a kingdom and priests to serve our God, and they will reign on the earth. (Revelation 5)
My prayers, incense in a golden bowl? My fleeting words that wisp into silence like smoke as soon as they leave my lips? Transformed forever into a sweet smell held in a precious bowl by the hands of the elders and creatures of heaven? It seems like an impossible fairytale. Today, it seemed so much more real, and so awe-inspiring, as we took the golden bowl down from the special place where our good dishes are kept. Lit a candle in it, it's fragrance wafting up like incense. Placed it before our little stuffed lamb. "Offered" the bowl to the Lamb, and knelt on our knees to praise God that He has purchased us, made us a kingdom, made us priests to serve our God, promised us that we will reign on the earth.

Is that real to you? Have you accepted the payment God made to purchase your soul, and bring it to heaven? If you believe, do you understand that you are part of a kingdom, you are a priest (for there is one mediator between God and man, the man Christ Jesus***) to serve God, you will reign with Him on earth one day? Do you smell the sweet fragrance of prayers-as-incense, do you value them, knowing they are mysteriously physical in heaven, held in golden bowls and offered before the Lamb?


***I Timothy 2:5; since Christ paid for our sins, all believers are priests serving under the High Priest (Hebrews 4:14-16): for more proof, see also I Peter 2:4-10; Revelation 1:6; Hebrews 10:15-23; Ephesians 2:17-20; and I John 2:26-27.

An unexpected joy

Katy commented we'll have the unexpected joy of hosting back-to-back
babies adopted from Ethiopia - this sweet girl dropped into our laps unexpectedly
on Tuesday, and the Glovers bringing their sweet girl on Thursday!

Busy days ahead - planning for VBS, doing last minute clutter cleaning,
taking some more photos (planned this time!) and picking the Glovers up
at the airport.

So I leave you with some of the shots I snapped of our dear little friend,

and the substantial, significant, long-awaited, yearned-for news that
Amy has not had a seizure for an entire week!
Perhaps the Keppra is working...regardless, I burst forth with songs of
praise tonight, instead of songs of mourning.

Give thanks to the Lord
Our God and King
His love endures forever
For He is good, He is above all things
His love endures forever
Sing praise, sing praise
With a mighty hand
and outstretched arm
His love endures forever
For the life that's been reborn
His love endures forever
Sing praise, sing praise

Forever God is faithful
Forever God is strong
Forever God is with us
~Psalm 136 paraphrased by Chris Tomlin