Take this cup


Blessed is the one who waits for and reaches the end. You will rest, and then at the end of the days, you will rise to receive your allotted inheritance. (Daniel 12:12-13 exc.)

For some reason, I dug out my old missions journal the other day. I knew this nugget was in there, and I needed to read it again this morning to encourage my soul, which shivers at the precipice of fear. Whatever is next, the biopsy, or the radioisotope MRI, or surgery...I simply do not want to do it. I simply want to live in my house with my family and not suffer. That is what I want. Yet I am willing to lay it down as an offering to the God I serve, even though on my lips is the prayer Jesus breathed in Gethsemane, My soul is overwhelmed with sorrow to the point of death. Take this cup from me. (Mark 14: 34 & 36 exc.)

This from the journal of my unmarried days as a nurse & missionary, August, 2002:

I feel as if you have once again taken me to the very edge of the world, somewhere where I end and You truly begin. Standing on the cliff today, in this foreign land, looking out over unfamiliar trees and an alien crystal azure, I feel Your wings underneath. Thank you for taking me to a place where I can sense how enormous Your love is. These billions of souls - You created, You love. We are Your possession, pride and passion. Here I see Your power moving. At home, in rooms with dying and tortured bodies, I feel the consuming depth of Your compassion. Here I feel the tenacity - resourceful spirit of mercy, giving, Your strong hold on each and every person in this world. Standing in Your palm would seem precarious, tenuous. Instead, I learn that I am really in Your grip...Your promise is to never let go. Neither shall any man pluck them out of my hand (John 10:28). I am here to find You, to test You, to ask You WHY we suffer? How can I hope to help, God. I am so desperately incapable. Yet only at a task so huge can I see Your strength and mercy. You amaze me. I feel the inexhaustible reserve of Your love spreading before me like an endless bridge swaying in the winds of my trial. With so many beloved faces flashing before my eyes, and the ache of longing to go on, to be with these loved ones - to go on without the pain of change. Yet knowing still that Your mercy, though unknowable, is complete. I know, too, that I was dead before and now breath life only because of Your grace. That if my eyes close to this heartbreaking, dear beauty, they open to the unimaginable. That I am only clay beneath the gracious hand of the Father, the master Potter. A vessel for the Spirit that makes life beautiful, and beloved, and bittersweet. I pray today for strength...that I never resent Your lessons or turn my face from You. That I go where you lead without hesitation. How can I not trust You, who assures me, No eye has seen, nor ear has heard, no mind has conceived what God has prepared for those who love Him. (I Corinthians 2:9)
Pondering the sea of pain we live in, I sing words with Tenth Avenue North again today. What does one more cancer matter? Why rescue me when others have died? I try to shy away from the selfish prayer that simply says, "Heal me because I am afraid" and truly have a spirit of willingness, "Heal me if I can bring You greater glory in some other way. Not my will, but Thine be done."

One tear in the driving rain,
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breaking heart?
One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Would You come close and hold my heart
~listen in entirety here~

Spring portraits

The children's annual portraits by my mother's rhododendron have become our tradition. I always try to take some "straight up" portraits, and some personality shots as well. The ones with personality invariably are the ones that end up on top of my piano! The rhododendron waits for no man, so cancer or not, away we went to Grandma's today for portraits.

First, the better photos technically speaking...





(Susan didn't see any reason all her cousins should get glamorous photos taken, and she shouldn't. Which, of course, is accurate...she is a glamorous little girl, that one!)

Finally, the personality shots...expect to see these under glass in my house next time you visit!




As I went through and edited these, I was, of course, thinking deep thoughts. About how we present ourselves to the world, and how we really are in inside. I think heaven is going to be a really interesting, quirky place with a lot of personality. I kind of picture it like a group of people after a glass or two of wine...just letting that God-given personality and passion shine through. Doesn't that sound inviting?? ...then shall I know even as also I am known. (I Corinthians 13:12)

On not ignoring my cross

Where's that place where time stood still
Is it under glass inside a frame?
Was it over when you had your fill?

Where's that place where time stands still
I remember like a lover can
But I forget it like a leaver will
It's the first time that you held my hand
It's the smell and the taste and the fear and the thrill
It's everything I understand
And all the things I never will
~Mary Chapin Carpenter, listen here

The only news on my tests today was from my midwife, who says things "look good". I am assuming that means nothing that looks too suspicious for cancer. Feeling very conflicted tonight. Back in 2008, I was told twice it "might" be cancer and twice that it definitely wasn't. And then I had surgery and it definitely was, and a worse kind than predicted. So I don't know how to react to good news, I guess! Praying it is true...not cancer...just weird symptoms and lumps. The nurse today told me I definitely still need to meet with the surgeon on Friday, so I will do that and we will go from there. I guess I am asking that you who read pray for our wisdom as we make decisions, which sound like they may once again be very difficult decisions with conflicting medical information to provide both pros and cons to every possible choice. I am so tired. It is probably emotional exhaustion. I wish I could go to sleep for days and wake up when this is over. I keep gritting my teeth and tugging myself back into the moment, as I read in yet another little gem of a book on suffering, "don't waste your trials". To drop this season like a hot coal, pull my covers over my head in retreat, is to drop the crown that is being wrought which I will someday cast at my Savior's feet. For the message of the cross is foolishness to those who are perishing,
but to us who are being saved it is the power of God.
(I Corinthians 1:17)

A line from one of our current worship songs keeps running through my head: there is one thing to be alive for, to take up my cross and follow you, Lord. (from Devotion by Hillsong United)

He sat by fire of seven-fold heat,
As He watched by the precious ore,
And closer He bent with a searching gaze
As He heated it more and more.
He knew He had ore that could stand the test,
And He wanted the finest gold
To mould as a crown for the King to wear,
Set with gems with a price untold.
Can we think that it pleases His loving heart
to cause us a moment's pain?
Ah, no! but He saw through the present cross
the bliss of eternal gain.
So He waited there with a watchful eye,
With a love that is strong and sure.
And His gold did not suffer a bit more heat
than was needed to make it pure.
(Author unknown, read in entirety here)

Can I keep singing?


When evening came, Jesus was reclining at the table with the Twelve. And while they were eating, he said, "I tell you the truth, one of you will betray me." They were very sad and began to say to him one after the other, "Surely not I, Lord?" Jesus replied, "The one who has dipped his hand into the bowl with me will betray me. The Son of Man will go just as it is written about him. But woe to that man who betrays the Son of Man! It would be better for him if he had not been born." Then Judas, the one who would betray him, said, "Surely not I, Rabbi?" Jesus answered, "Yes, it is you." While they were eating, Jesus took bread, gave thanks and broke it, and gave it to his disciples, saying, "Take and eat; this is my body." Then he took the cup, gave thanks and offered it to them, saying, "Drink from it, all of you. This is my blood of the covenant, which is poured out for many for the forgiveness of sins. I tell you, I will not drink of this fruit of the vine from now on until that day when I drink it anew with you in my Father's kingdom."

When they had sung a hymn, they went out to the Mount of Olives. ~Matthew 26
The evening prior to His death. The long night lay before Him, He had beads of bloody sweat to be wrung from Him in His agony. What did He do, that very last night of normal? He reclined at a table with His friends. He helped them understand the suffering to come. And he sang. Jesus sang?!! I read that this morning in a little book I picked up for $2 at a used bookstore yesterday - "How to Meet Your Troubles", the slim brown volume is titled. I never noticed it before - but He did! The very last thing He did before walking to the garden was sing in worship.

I didn't feel like singing last night, when I typed up the words to this song - "How Can I Keep from Singing?". It has been ringing through my heart for days, as I practiced it for Sunday worship. But I just didn't have it in me last night to post these words...they seemed falsely joyful.

For eight weeks, something has been troubling me. I went to the doctor once and my vague symptoms were dismissed. Since then, they've worsened, and I took to doing a breast exam every day in the shower, looking for what I thought was an infection brewing. On Saturday, I found a small lump, like a pebble under my skin. I found it late at night, after finishing writing on a paper. Aaron was asleep, my mother was asleep. So I spent most of the night in prayer, and woke after just a few hours of sleep to go sing, play my harmonica, play the keys for worship at church on Sunday. Sunday afternoon, I was able to tell Aaron and my parents. We just accepted it. Okay, that's what we'll do next. Figure out this lump business. On Sunday night, again in the shower, I thought I found a larger lump, too.

I went to the midwife yesterday. She has been doing my physical for six years now. She found my thyroid cancer because of her carefulness and knowledge of my body's normal. I hoped she would say I was imagining things. Instead, she carefully measured the lumps - 1/2" for the small one; over 1" for the large one. (that's about the same size as my thyroid tumor when it was removed - between 4 and 5 centimeters) She checked her computer. With normal risk factors (mine are anything but) and only one of my symptoms, the risk of cancer is probably 15%. My own check, combining the three symptoms I have with my risk factors, is around 75%. Oddly enough, that cheers me - the more probably it seems, the less likely it will be true, in my experience so far. The less probable - well, then of course it will be! I know it doesn't sound logical, but it is a small comfort to me that all my previous experiences have gone this way.

Because of my risk and the other potential problems that could cause these particular symptoms, I am already scheduled to meet with a surgeon, regardless of the outcome of my diagnostic tests tomorrow ("smashogram" and level 2, high definition ultrasound). I will probably require surgical removal of the lumps, if nothing more. I will go to sleep knowing I am having lumps removed. They will test the lumps for cancer while I am still under anesthesia, and remove one or both of my breasts and lymph tissue if it is cancer. Going to sleep not knowing is one of the hardest parts of the trial for me to face again.

I don't know what to ask for. Instead, I am back to basics: praying the Lord's prayer. Give me the food I need today, Lord. Forgive me, I am weary. Thy kingdom come, Thy will be done, in my body as it is in your heaven. For thine is the kingdom and the glory forever and ever - so be it.

And yes. I will keep singing. I will keep praying. Words I wrote myself in long-ago days of trouble are echoing in my soul today.

Lord, lead me safely through the path of today,
Reach down and rescue me from hate and from pain,
Set Your laws before me, That I may have a lamp for my feet,
O Lord, guide me.
In this place,
Surrounded by a thousand fears,
Temptation and weakness,
Hatred and lies,
He promised me faithfulness, integrity,
A way that is perfect, a light for my life.
~"Guide" from Psalm 18, 10/02/98


I struggle, God,
You hold me up, I stand.
In your all-surpassing power, not my strength.
When trouble overcomes me, I turn my eyes to You.
For though I may crumble, You endure.

I do not lose heart,
I do not lose faith.
Your promise is my hope, day by day.
I fix my gaze on You, I am renewed.
~"Renewed", 2001

I can sing when I lose my step
And fall down again
I can sing 'cause You pick me up
Sing 'cause You're there
I can sing 'cause You hear me, Lord
When I call to You in prayer
I can sing with my last breath
Sing for I know
That I'll sing with the angels
And the saints around the throne

~ How Can I Keep from Singing,
sung with beauty by the random self-deprecating guy, below,
and words by Chris Tomlin (2006) and Robert Lowry (1860)


God knows what I need

When words fail, there is always music.

God knows what I need
You know what I need

Your love is
Your love is
Your love is strong

Our God in heaven
Hallowed be
Thy name above all names
Your kingdom come
Your will be done
On earth as it is in heaven
Give us today our daily bread
Forgive us weary sinners
Lead us far away from our vices
And deliver us from these prisons

Monday mish-mash

I finished coursework for my PhD yesterday! Somehow the big push to finish three papers in less than one week has put my brain into hyperdrive, and, now that it is free from the pressure of school commitment, it is going everywhere.

One of the things I have been contemplating this morning is the fact that being a photographer means I am altering my children's visual history. I constantly crop out the mess by stepping closer. Seriously, have you ever really seen a truly messy photo on my blog? Well, today I'm 'fessing up. This is what the house of a PhD student often looks like.

What I love about these two photos is that, regardless of the mess, there are two happy kids in the pictures. I do think I need to be more authentic as I document family life, so that when my kids are 30 and pulling their hair out because they haven't put away any laundry for a month, they won't think they're inferior. Sometimes failure needs to be normalized...otherwise it is too depressing! To err is human, right? And then, of course, I turn to my response to my failures. Do my kids see me failing and just wallowing in the fact that I'll never be perfect? Or does my failure refocus all of our eyes on the one true Perfect One?


Longing

Have you ever held someone you love, heart to heart, and felt that slowing, filling in your chest that only love brings? For me, that feeling comes only from my children and my mother. When I cuddle my kids, when I get a long hug from my mom, there is some kind of spiritual level communication that occurs. Sometimes it almost hurts, sometimes nothing ever felt so good. The scientist in me wonders if the heart actually swells in some way in that moment, when you really relax and reconnect with that person.

I had one of these moments in the midst of chaos yesterday...just a brief moment, holding Caleb and then holding Amelia as they woke from their naps. One blink of an eye, and I had moved on to correcting the squabbling over lap space and trying to get Caleb to stop whining. But just that moment...it reminded me of the heart-level love response I have for these children. The type of love that easily gets lost in the day to day work of life. I wonder if that mother-response I feel deep in my chest is Christ-love flowing over for a brief second? All those mother-hen, nursing mother references in the Bible seem to collide in my own heart for just a moment.

I am reading an excellent book on parenting, one of those books that is literally page after page of "aha!" moments and flashes of recognition between the poorly articulated thoughts in my own head and the tersely written prose of this author. At the very least, this mother/author is a kindred spirit, someone who parents much like I do, who has the same strengths and weaknesses. Leslie Leyland Fields writes,
No longer do my wildly fluctuating levels of fulfillment measure the worth of the whole parenting enterprise, the worth of my own parenting, or the worth of my children. The questions "Is parenting really worth it?" and "Am I fulfilled as a parent?" are, finally, irrelevant. I ask myself instead, "Am I parenting faithfully? Am I parenting consistently? Am I honoring God in how I raise my children?" This is what I am responsible for. God is responsible for all the rest. Every day his sure hand is beneath my children, just as it is beneath me. This is our deepest hope and greatest pleasure. It is a hope that also frees our children as we release from them a weight they were never meant to bear: our expectations that they'll make us happy. Then every moment of delight they bring is extra, grace upon grace, like a jig joyously erupting before a startled audience. We can laugh for days in the unexpected dance.
Part of me aches that failure ever has to enter this relationship between mother and child. What I truly long for - more than the adventure I longed for as a teen, the success I craved as a young adult, the peace I lusted after as a young mother - is to be like Christ. The painful truth is that I will fall short of that goal until I open my eyes in heaven. I hate being a sinner. I hate wounding my children with my poor choices or anger or lack of patience. But it is inevitable, to some extent...because, apart from Christ, none of it amounts to anything. All my work, good intentions, promises to myself and God - without the power of Christ, I will still fail. I am thankful that there is One who loves my children perfectly. The swelling in my chest when I hold them is the fervent desire to love them as perfectly as I am capable.



___________________________________
Commentary on the curse & pervasiveness of evil from my all-time favorite female musician, Bonnie Raitt:
We were born with our eyes wide open
So alive with wild hope now
Can you tell me why
Time after time they drag you down
Down in the darkest deep
Fools and their madness all around
Know that the light don't sleep

Step into the silence
Take it in your own
Two hands
And sprinkle it like diamonds
All across these lands
Blaze it in the morning
Wear it like an iron skin
Only things worth living for are
Innocence and magic, amen

~ Silver Lining, written by David Gray

In the garden of the soul

Show me the way that I must take; to Thee I offer all my heart. Teach me to do thy will for thou art my God. Keep me safe, O Lord, for the honor of thy name. ~ Psalm 143:8,10,11 NEB

This is the view this time of year of what I still think of as Steve and Amy's field. Pie in the sky dreaming, probably. The colors of spring are almost as vibrant as the colors of fall: the green of the leaves and yellow of the flowers beginning to break through the tarnished gold of last year's corn stubble on the ground; the pinks, oranges, and yellow flowing out of the black, wet trunks of the trees in watercolor blur; gray stick of the trees yet to blossom standing like punctuation marks between the colors.

Same landscape as my life these days, really. Cancer and hospitalizations and illness in the midst of the busiest season of learning are the punctuation marks between the colors. The vibrant colors of children's voices, laughter, scooters and bikes whirring on the deck boards of the porch and the rattle and hum of Big Wheels flying helter-skelter down the gravel driveway. The smells of bonfires burning, and brats over the fire, and clean, musky rain. The life overflowing with pain lends haunting sweetness to the life running over with small joys.

When I wake up in the garden
Peaceful slumber wakes my eyes
The sun and moon are always present
There are no more crying people around

Love fills all up inside me
Filling my heart with wishful dreams
No more sorrow fills my canvas
Along this lonely sea

Ships fall off of the horizon
Bringing love, peace, and joy
No fire can ever harm us
Only music fills the air

~ the voice of another worshiper found in an unexpected place:
Susan Tedeschi sings "In the Garden", co-written by Tedeschi
with her bass guitarist, Tommy Shannon, best known for his
days with Stevie Ray Vaughn

We sometimes imagine that God must eventually "sit us down" and "explain" his mysterious ways to our satisfaction. Let us suppose we have never seen a skyscraper. We discover a whole city block surrounded by a board fence. Finding a knothole, we peer inside. Huge earth movers are at work; hundreds of men in hard hats are busy at mysterious tasks; cranes are being moved into place; truckloads of pipes and cement are being unloaded. What on earth is happening? There is nobody around to answer our questions. If we wait long enough, nobody will need to. When we see the finished building, all the incomprehensible activity becomes comprehensible. "Oh! So this is what that was for."
"I shall be satisfied when I awake, with Thy likeness" (Ps 17: 15 AV).

Succumbed


I finally fell victim to the Campylobacter overnight. It is exactly 7 days since my dear son baptized me in his river of vomit, and the incubation period for the bacteria is 2-10 days. So that's about right. I've been racking my brain to find a time in the past 3 weeks that would have been better, because this timing is really awful - I have three papers due in the next 4 days, one due tomorrow. Writing has been nearly impossible today. But, as angry as I felt at the timing as the initial tremors of the illness began to sweep over me, I wasn't able to come up with an option that would have been better (during my presentation in Kansas City? While I was tending Aaron and Caleb in the hospital? Right when I had two funerals to attend??).

Here I am, on my knees asking for divine strength again. That is, after all, the point of all this suffering He has allowed. Please, God, help me write these papers and stay upright long enough to accomplish my work. Please God, heal my son's pancreas, so he is not diabetic or unable to digest food without help.

Caleb's lipase (pancreas digestive enzyme) continues to be persistently high in the 350's (normal for his age is less than 50). He developed a large hematoma (blood clot under the skin) and phlebitis (pain and inflammation in the walls of a vein) after his last blood draw, which was attempted even though he is one solid bruise from elbow to wrist at the moment from all the pokes in the hospital. Poor sweet boy - screaming, "NO POKE CALEB!" as loudly as possible while he held still to allow them to draw blood. It breaks my heart to think of holding him through that again on Monday and every few days afterward. Please keep praying for that silly old pancreas! Who ever thought the things we take so totally for granted could cause us so much pain?

Yellow

I bought yellow sheets for our bed a few weeks ago. When I put them on our bed for the first time, I realized there was no logical reason in the world to buy yellow sheets: they don't match with a single thing in our bedroom. It is probably exactly this uncharacteristic paucity of yellow in my favorite room that compelled me to purchase those sheets.

It is, after all, my favorite color. Those of you who have visited my home will not be the slightest bit surprised to learn this. And yellow tulips...the perfect combination of my favorite color and my favorite flower.

While this looks like a series of paintings, it is actually close-up photographs of the tulips blooming in my front yard. You remember - those tulips my husband surreptitiously and serendipitously planted right in the grass of our front lawn.

Yellow is only specifically mentioned once in my favorite book, in Psalm 68:13, here quoted in the Amplified version: you - the slackers - may lie among the sheepfolds in slothful ease, yet for Israel, the trophies of the enemy are like a dove are covered with silver, its feathers excessively with yellow. After a day of hard work, this reference to yellow as a return for tenacious clinging to God is refreshing.

Also...I keep forgetting to report this...my grandma Irma came home from the hospital after getting some treatment in the ER, and is doing well living with my parents. It is a supreme joy to see her every day and share the brokenness over Grandpa's death with her in small ways. We have been eagerly watching for cardinals - Grandpa's favorite bird and kind of his personal symbol - out the back windows in the heat of the spring.

Union Station in citrus

Kansas City was followed by our week in the hospital, and the photos were still sitting on the memory card when I went to edit some close-ups today. Here is the "boy day" that followed our girl day - Union Station, where orange is surprisingly prevalent.

Main terminal.

Trains dissect the heart of downtown.

Historic engine.

Whizzing past beneath the foot bridge.

Onlookers - apparently coordinating??

Abandoned rail cars.

Rusty tracks.

Moving in two directions

We have come through another storm through which it was not "easy to trust". But we have been sustained...nourished, even...through the desert, and find ourselves in the green pasture of home once again. I am hard at work on school and some extra writing I took on for Lippincott to make up some of the lost income if Aaron were out of work for an extended period. His health is improving by leaps and bounds, and he expects to be back at work later this week. Caleb had a great night and has had more energy and less pain today on a more nutritious, home-cooked diet.

How fast the time flies! Under the duress of hospitalization after hospitalization, I feel the bittersweet ache over lost time with my growing girls. It is the burden of every parent when one of their children develops special needs. Two weeks ago, in an unseasonably hot streak of spring weather, I looked out the window and saw my two girls in rapt, giggling conversation on the porch. The sensation in my chest was half sorrow, half joy as I reflected on the fleetingness of toddlerhood and the consequent joy these sisters will have, growing up together. It reminded me again of a favorite quote from Wallace Stegner's Angle of Repose: She was like a traveler still on the road on one of those evenings when sun and moon, one rising as the other sets, face each other across the world.

I am watching Katy fly through a biology textbook, teaching her to carry and borrow when adding and subtracting large numbers, and shepherding her new-found joy of reading, channeling her into my own childhood loves - Encyclopedia Brown, Boxcar Children, Happy Hollisters, the "red book" treasuries. Rosy and I are working on printing, discovering all kinds of art and music we both adore, learning numbers and letters and shapes and a little French. These days are oh, so short, and so precious. In my spirit, I feel one hand gripping the shirttails of these two growing girls and their daily lives, while my face is necessarily turned toward the needs of the younger two, who have been ill. I pray for a greater sense of balance in the coming days as I am home, at long last, with all four.


"I have become absolutely convinced that neither death nor life...neither what happens today nor what may happen tomorrow has any power to separate us from the love of God" (Rom 8:38-39 JBP). So wrote Paul, whose life did not represent a series of events in which we would say it was "easy to trust." It was not easy. It was necessary. A life free from suffering would be a life in which faith in God would be a mere frill. A human life, on the contrary, is one in which faith is a necessity.

Going home?

I think we are springing the coop in a few hours if Caleb has no more bloody stool. Caleb was up from 11 p.m. to 5:30 a.m. screaming in pain last night. The lab work investigating his pancreas function shows why: the values have doubled since he started eating yesterday. Pancreatitis causes severe pain, especially during digestion. However, the pediatrician doesn't feel it is necessary to start an IV and take him off oral intake at the moment, so we are going to just take him home and attempt to treat his pain and limit his oral intake to just liquids there. I am frustrated with the situation, as usual, and also excited to be going home, where I have more resources to deal with these sorts of things.

Witness

To be a witness does not involve engaging propaganda, nor even in stirring people up, but in being a living mystery. It means to live in such a way that one's life would not make sense if God did not exist. ~ Cardinal Emmanuel Suhard
I walked four miles every day in high school. Every day, I walked past this "dinosaur". From the road, it looked exactly like a brontosaurus. For some reason, this abandoned machine became part of the visual history of my childhood. I was thrilled when I drove by my old house on my 31st birthday and saw that it was still in the field, still surrounded by the melting shapes of old round bales.

Something not particularly beautiful nor particularly ugly, yet somehow symbolic of a forgotten joy. It didn't speak to me, except to stand a timeless witness of a bygone era. The rusting steel and grayed plating, the stays frayed and tired holding their burden for decades. The combines of my own time were bigger, grander, greener. This piece of ancient machinery was somewhat of a mystery: why leave it like that, in the middle of a field? It wasn't part of the usual farm graveyard. It stood alone, always surrounded by those mouldering round bales. Silent. A witness.

My life of late is the dinosaur in the middle of the field. Aaron and I have no more explanation for the way our life has gone than those questioning us have answers. There are days when I seriously wish there were some kind of refund policy on what I've been issued! I don't like my life that much lately, much less love it. Whereas Christ shouldered His cross out of love, I shoulder mine begrudgingly, simply because it is the cross that is set before me. One foot in front of the other. I barely have time to grieve the losses that are entailed. I am just stepping forward. And, most of the time, I seem to be dragging this cross of illness along with me.

It is hard to know whether you're being an effective witness. I get the feeling that our life experience sometimes has the opposite effect...I know it does for me! Where is God, when life collapses like this? Is He listening? Does He have a plan? What I long for is that my life would be lived in such a way that it is impossible to deny God's hand in it. I feel like I am still figuring this out: does the testimony of my life make it impossible to deny God's existence? Or does it make God's mercy and love seem improbable? I pray that, by the story's end, I can firmly say my life reflected His mercy and love. When I am tempted to have a pity party, and tell God I hate my life right now, it is this desire that stops my tongue. Make me a star, God. Please, make me a star.

Do everything without complaining or arguing, so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe as you hold out the word of life... (Philippians 2:14-16)

Day 6: We're getting bored!

The first four pictures capture our day. We've been laying around, Caleb's complaining of tummy pain and eye pain and a headache. We're back to forcing fluids because he won't drink. I told the nurse I was willing to sit with a syringe and put it down 10 cc's at a time before we stick him for an I.V. again!




And this last one is just for kicks. Caleb has learned the unique boy-joy of going shirtless now that warmer days are here, and I thought he looked like an absolute corndog walking around with thumb in his belt, his cowboy hat on, and no shirt. What a goof-ball!

What a difference a day makes

What a difference a day makes,
Twenty-four little hours.
Now there's sunshine & flowers
where there used to be rain...

Caleb and Grandma on his 2nd birthday in February.

Aaron was discharged last evening after a full day with no vomiting and little diarrhea. He was told to expect colitis symptoms (bloody diarrhea and pain) for another week at least. He sounded very, very tired when I talked to him on the phone last night. He said the drive home took all his energy.

Caleb is gaining energy with each passing hour, it seems. He had cream of wheat cereal for breakfast and is drinking well enough that they have been able to leave out the IV. It failed yesterday, and they tried several times to replace it, but with no success. He seems to be doing fine without it. His poop continues to contain all-out blood, and the doctors have decided he shouldn't go home until that has stopped. His stool must be blood-free before he can go home. His blood count is borderline for a transfusion as it is, so they need to keep tabs on that with the continued bleeding. His pancreas enzymes have started to climb back up again now that he is eating and drinking, so he may need to be put back on an IV and stop eating and drinking if they hit a certain level. So his condition has generally improved, but is not good enough yet to go home. He has also lost 9.5 pounds since his last check-up weight in the end of March. They are talking about starting some more IV nutrition, but need to check his liver function first.

My grandpa's funeral went well, and the eulogy came together for me, although it was by far the hardest thing I've written in years.

Caleb and Emma. These two really look like cousins, don't they?
Caleb has had several visitors in the last few days: Nick & Kathy, Kim Shaw, Lisa Schroeder, Pam Berg, Kelley Downie, Scott & Jamie, Great-aunties Poozy and Shera, and Ben, Megan & Emma

Subdued

Aaron is drinking clear liquids and tolerating them fairly well this evening. Caleb has had some ice chips and we are waiting to see if that increases his diarrhea again or not.

I miss my girls, my home. And my husband, oddly enough - being across the hall and seeing him for 20 minutes a day just isn't enough.

Tomorrow is my grandpa's funeral. I have been trying all day to write the eulogy. Now I will be trying for a while tonight as well...Caleb apparently slept so much today that he is not particularly interested in going to bed yet.


Aftermath in the night

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say...
Blessed be the name of the Lord

A sleepless night. Caleb ate a tub of orange jello today, after begging for hours for something to put in his empty belly. The jello came out, virtually unchanged, a few hours later after some pretty intense stomach cramps. And it has been followed by three diapers filled with bright red blood. There are not even any clots in the blood - just straight up, liquid blood. I cannot sleep. My dear, sweet baby! I am undone.

I did post a picture of one of the diapers, but I didn't want to gross anyone out, so I buried it earlier in the blog (Heather, this should tell you exactly how much I love you!). Click here if you want to actually see what is shredding my heartstrings tonight.

My soul is in anguish.
How long, O LORD, how long?
Turn, O LORD, and deliver Caleb;
save Caleb because of your unfailing love.
(Psalm 6:3-4)

Visitors?

Now that we know we aren't contagious (at least as long as you stay away from diapers), Caleb and I would love visitors! Luther Hospital, room 4129. Feel free to call my cell and stop by!

Answers!

The cultures came back positive for Campylobacter, a very common source of food poisoning. Caleb has now been started on antibiotics. However, Aaron has been on them since Sunday with no improvement, so that is concerning. We also figured out where we got the infection from - we went through a spurt of eating soft-boiled eggs just before Easter, and apparently that is a very common source of this particular bacteria. Katy and I didn't have any, which explains why we did not get sick.

So, a few new prayer requests:
  • Effective treatment with antibiotics
  • Out of the hospital in time for Grandpa's funeral
  • Aaron's quick recovery of strength so he can go back to work
  • No development of Guillain-BarrĂ© syndrome, which occurs in 40% of patients with severe Campylobacter requiring medical attention

Long-suffering

Many of our prayers are directed toward the quick and easy solution. Long-suffering is sometimes the only means by which the greater glory of God will be served, and this is, for the moment, invisible. We must persist in faith. God has a splendid purpose. Believe in order to see it. "Our troubles are slight and short-lived, and their outcome an eternal glory which outweighs them far. Meanwhile our eyes are fixed, not on the things that are seen, but on the things that are unseen" (2 Cor 4:17, 18 NEB). ~ Elisabeth Elliot (daily devotional available by e-mail, subscribe here)

I guess I've always thought of "long-suffering" as "patience". A virtue. Not an experience. This long line of never-ending and escalating health trials has me seeing that particular fruit of the spirit in a new light. I never really thought of "patience" as a virtue that persists and pervades for months on end. I've always thought of it more in terms of the heat of the moment, the ability to withstand or wait for something for a few hours or a few days. Waiting for God's healing for our family has gone on now since June, 2008. Almost 2 years. Looking backward, it seems like we've weathered it surprisingly well, surprisingly intact as a family, as a couple. Looking forward, it is daunting. What if God calls us to be long-suffering for years and years more?

As of today, the waiting continues. Aaron was unable to tolerate the 3 ounces of chicken broth he sipped yesterday. He has been restricted, once again, to just taking sips with pills for another 24-48 hours. There is no end in sight to his hospitalization. Tomorrow is his last day of short-term disability pay. I don't have a good handle on the financial implications for our family. We have a small emergency fund saved, which has obviously taken major hit after major hit with cancer, encephalitis, and now this. I am starting to look into more work through Lippincott, the publisher I currently write for on a very part-time basis. I am also looking into renewing a few of my certifications and taking a job in the per diem float pool in the Cities. I spoke with my old manager today, and she is ready to hire me if I wish to do it, and can probably guarantee me 1 to 2 12 hour shifts per week between the pediatric and adult intensive care units. It would mean finding childcare, traveling, and relearning some very dusty clinical practice skills. But I will also be the first to admit I find the prospect a bit exhilarating! It may also be that God is providing an opportunity that will one day enhance my ability to work as a professor, because my clinical practice experience would be much more recent.

Caleb is also "resting" on IV fluids after a failed attempt at drinking this morning. He continues to have lots of blood in his poop, and his blood counts are consequently still dropping. The pediatrician did mention the possibility of a blood transfusion at some point in the future if he continues to bleed in his intestines. He has a bit more energy today, although he is already on his 3rd nap at noon as I write this. He did sit up in the wagon for one ride, and has sat in bed to play with toys for a little while today.

Prayer requests, if you would:
  • Aaron's rapid healing and ability to return to work
  • Wisdom for doctors as they continue to try to make a diagnosis as to cause of this illness
  • Wisdom for both Aaron & I as I pursue possible short-term employment
  • Healing for Caleb & that the bleeding would stop before a transfusion is necessary
  • Peace for Caleb tonight as he is without me - I am going to attend our friend's funeral this evening, leaving him alone for a short time with Kelley Downie
  • Peace, good behavior, and sweet times for my girls, who are without both parents for an unknown period of time
  • Strength for all those who are assisting us with everything from childcare to meals and constant prayer!

At the end of the day

It was good for me to be afflicted so that I might learn your decrees.
My soul faints with longing for your salvation,
but I have put my hope in your word.
(Psalm 119:71 & 81)


Let me first say that, because of the many who are serving our family out of love during this time, I have the energy and emotional fortitude to write tonight. Thanks, Pam, for sitting with Caleb so I could shower and see my girls. Thank you, Mom and Dad Thul, for canceling all your other plans and staying with the healthy kids at home. Thank you, Kanzes, Bergs, and Greenes, for the Thomas videos, snacks, and toys. Without all of that...I wouldn't have had energy to do anything but flop into bed today! I was a little like a limp dishrag after 24 hours without food, few hours of interrupted sleep last night and no shower for days. I feel very refreshed this evening.

Caleb is doing about the same. All of his lab tests are slightly improved at the end of the day, probably because he is rehydrated again. He is still pretty lethargic and sleepy. He also hasn't had any diarrhea since 2 p.m., which is amazing! The doctor thinks that giving his stomach a rest by hydrating him using IV fluids is doing the trick to slow down the diarrhea. Unfortunately, if his case is like Aaron's, when liquids are re-introduced, he will still have trouble. Aaron tried some clear broth this afternoon and is in horrible pain this evening because of it. Another day in the hospital for him tomorrow. He was so weak today, his shower was too much for him. Caleb is feeling about the same - he won't even sit up in his wagon for rides in the hall anymore, preferring to lay flat and watch the ceiling go by.

I am constantly in prayer, for my friend, recently widowed, for my grandmother, recently widowed, for my family, wasting away without food or drink. I am clinging tooth and nail to the promises of God - praying it is those good promises that come true for our family. Psalm 1 - the man planted like a tree by living water; Jeremiah - God's good plans for us; Job - the double blessing poured out after the test of suffering was weathered. I am waiting desperately for the double portion. I am trying to be spongy and soak up all the life-altering lessons God is proffering through this season of sorrow. I am begging to know just a taste of Christ's willing obedience, not my will, but Thine be done, Father!

Perked up

The IV is in after 7 failed attempts and Caleb is doing better since getting a hefty dose of fluids. He is sitting up in bed for a few minutes playing with a magnetic race car puzzle. He doesn't even want to sit in the wagon now for rides, though. Thanks for the prayers about the IV - keep 'em coming for healing and quick recovery from this latest 4 hours without fluids. Caleb is now quite dehydrated again, so much so that he couldn't even produce tears while crying through the multiple IV attempts.

Hoping to run out for a shower, something to eat, and a hug from my girls at home in a bit.

Our Father's full giving has only begun

Please pray this afternoon for Caleb. His IV quit working a few hours ago, and he has been without IV fluids for several hours now and is again getting dehydrated. He has already been poked four times unsuccessfully as his veins are skinny from the dehydration. An anesthesiologist is coming in 15-30 minutes to attempt again. I would beg for your prayers, it is so difficult to watch him using his last ounces of strength as he squirms in pain during the IV starts. He immediately goes to sleep once they are done poking him, even before we've bandaged the failed site.

My dad posted this to my Facebook, and the tune is just going through my brain over and over. I can't say enough how much I value the fact that I was taught sacred music and verses set to song as a child...they are the visceral Scripture memory that strengthens and sustains me in the most stressful, exhausted and overwhelmed moments of these trials.

He giveth more grace as our burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials He multiplies peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.

His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.

~ He Giveth More Grace, Annie Flint, 1866-1932


This song was written by Annie Johnson Flint who has written some of the most inspiring poems dealing with faith and triumph in times of trial and suffering. She was born in Vineland, NJ and lost both parents before she was six years old. Adopted by a childless couple, she became afflicted with arthritis as a teen and soon thereafter became unable to walk. She aspired to be a composer and concert pianist but when illness deprived her of her ability to play the piano she resorted to writing poetry. Some of her poetry she set to music. Later in life, being unable to open her hands, she wrote many of her poems on the typewriter, using but her knuckles. (from http://www.hymnstory.net/)