Trading in my cardboard crown


We listen to Grace Potter for a whole month straight, and I dream of cutting the foot pedals off one of my organs and building a revolving amp like the Leslie she had custom-made. (One of the major perks of being a famous musician has got to be the custom-made instruments. What a dream come true!)


We fire up the organ once a day and Caleb is always first in line. I'm not sure if it's the many buttons and slides he can manipulate to his little engineering brain's content, or the thunder of the bass pipes rattling the wall in front of him. Either way, I guarantee this kid is going to have a love of organs for the rest of his life.


I look down at the walnut furl of the organ leg descending out of the cabinet, and I think about how Amy told me once that photography is the gift of seeing beauty in the little things, the romance that exists in your own life. I think about the book she recommended slowly drawing my heart back into prayer and praise, Ann's book tuning my ear to the music of the universe that plays everywhere, Serena's book finally bringing the light of Grace to the forefront of everything, as sin and hell and death finally get pushed into the shadows of my heart instead of the doorway. I look around me, at the table with the beautiful poinsettia embroidered red tablecloth covered with oatmeal from breakfast, and the laundry, with it's brief breath of summery freshness wafting, piled in mountainous heaps in the laundry room. I see the glisten of the professional wax on the 1950's linoleum tile glistening glints of my husband's love, borne with hours of labor on hands and knees. I think of those scabbed knees, and look at the Clementine peels and pistachio shells littering the floor, and I wonder that what glints through is love and not the endless labor that awaits a woman every time she opens her eyes to her home.


So I cut a neat slice from the center of the pie of this home, and look at my camera's display as a smile creeps over my lips. That smile is the thud as joy takes off from my soul like the sky-bound firecracker still encased in it's pretty paper shell, and then a moment later the explosion. It trickles down all over the room in a shower of colorful sparks, and here I am, soul abandoned to joy, in the midst of my toils of the day and the frustrations of it all. It is slowly dawning on me that He is so different from the rest of us, this God who tells me that He knows the plans that He has for me...plans to prosper me and not harm me, plans to give me hope and a future (Jeremiah 29:11). I think that means an easy life, an entertaining life, a blissfully happy life, a life of wealth or fame, perhaps. He whispers through these joy-moments that He's giving it to me, right here, in this messy house with these raucous children.

The "hall of fame of faith" in Hebrews 11 starts out by telling us that we need to have faith in two things to seek the face of God: that He exists, and that He is the rewarder of those who diligently seek Him. But what follows, in that "hall of fame", are not the stories of prosperity, but the stories of great suffering. Noah, who watched his whole world disappear in the flood waters and rebirth different and desolate; Abraham, a sojourner in a land of enemies, who twice sent his wife to sleep with other powerful men, was asked to sacrifice his only son, and never saw the promise God made him brought to fruition. Moses lost his family as a babe, was raised by the enemy of his people, led the most worrisome group ever through an exile in a desert. Rahab endured a life of prostitution before going to live as an alien with an enemy people. The end of this passage is a litany of what we might have in store for us: beatings, floggings, sawed in half by the sword; we might live as destitute, persecuted, mistreated people wearing skins for clothing and welcomed nowhere. It says again, at the end of the chapter, that all those listed where commended for their faith, yet none of them received what had been promised.

Abraham lived in tents, abandoning earthly comfort for the hope of a city with foundations, whose architect and builder was God.  Trading prosperity here for prosperity there. A crown of jewels in heaven for faith through suffering here. Am I willing to join these ranks? These people who did not receive the things promised...only saw them and welcomed them from a distance... and admitted that they were aliens and strangers on earth. This is what I have faith in? Not worldly blessings and rewards, but heavenly ones? Is that what starts the thunderous firecracker of joy exploding in my soul? This giving up of everything that ties me down so my soul is free to see? See the blessings?

I am on the notorious middle ground that has bred discontent for the middle class in societies everywhere since the beginning of time. Who wants to be average? Surrounded by people just like yourself? There is that seed, deep in the soul, that begs us excel. Yes, our culture cries it, too, a cardboard-crown copy that says "be all you can be" and commands us to find our individuality and live it out limited only by how high we can dream. But that seed is common to humanity, and comes with the unique stamp of our soul that sets us apart from every other person on this planet. Did God put it there? Can He light that unstoppable seed of desire up like a homing beacon for all the world to see as He teaches me that this, the blessed wonder of relationship with Him that is known only to Him and I, is what makes me unique and precious? Not accomplishments, not the individual wonder of my talents, but, like the parable says, what I invest those talents in. Here, or eternity? This question calls from every blessing-dressed-in-ugliness that surrounds me today:

26: the laundry piles (that I have a machine to wash fresh and sweet)

25: the dishes piled (waiting for the automatic dishwasher to spray clean water from 100 feet underground)

26: the Clementine peels and pistachio shells (that fill my children's bellies with such nutrition my forebears never dreamed of in this barren, snow-covered wilderness)

And from earlier in my first week of counting the blessings up with a number for each one:
16: sweet resolution after an argument

15: my baby girl learned to button

11: wind whirling snow crystals into the dawn off the roof of our bedroom wing

6: waking to Rosy singing

3: PG Tips tea, caramel-colored by fresh cream


Weekends are for wondering: an update on cancer & Amy's seizures

amy's eyelashes
I remember deciding to name her after my dear friend. And my favorite great-aunt. Hard-working peace. That's what Amelia Irene means. I had no idea then how God would bring her name to fruition. She has been my hard-working peace, the peace that is striven for and won only with battle scars and broken hearts.


After a break from grand mal seizures during the day since August - unprecedented, freeing, believing, hopeful season! - and no nocturnal (during sleep) seizures since late October, Amy's neurologist decided to try weaning her off one of her anti-seizure medications (Depakote). Her epilepsy monitoring in the hospital at Mayo in October had shown very little seizure activity (only during sleep) and what was seen wasn't grand mal, so it seemed like the appropriate move. She had gone down by three pills per day by mid-January. We started noticing more partial seizure activity and some behavior oddities we hadn't seen since summer of 2010. On January 14, she had her first grand mal seizure in the day since August. And again the next day, and the next. Then she started having them at bedtime again. We immediately went up (even though we couldn't get ahold of the neurologist by phone over the weekend) on her Depakote. But she kept seizing.

On Thursday the 20th, she had her closest brush with death since last July, when she had a seizure that lasted 9 minutes and she choked on her vomit. She has been a pacifier and bottle addict, and the neurologist actually thinks the constant sucking might be a way of coping with seizure activity in her brain. It is really hard to see your 4 1/2 year old with a Nuk constantly, treat the chapped chin everyday, and weather the withering glances of strangers when she begs for it in public. But, it seems to help. So there is no way I am taking it away at this time. She often asks for a Nuk when she is stuck in a "partial" (see description here). She did so on the 20th, and I gave her one, an old latex one she's had from late infancy and recently rediscovered (I was keeping it for sentimental value, because it was her favorite as a baby and the familiar pink star just says "baby Amy" to me when I look at it). A few seconds later, she collapsed in a grand mal seizure, and I couldn't get the Nuk out of her mouth. She vomited out around the Nuk, and then made some weird sounds I hadn't heard before, so I used the handle of a butter knife to pry open her jaws and remove the Nuk. Only there was no nipple on it anymore. Her mouth stayed clamped shut, although she was obviously choking, so I levered further until I could get my fingers in. I got her mouth open enough to see the Nuk nipple floating in the back of her throat with some vomit, and hooked it out with my other hand.

In a few seconds, I went from, "Here we go, another seizure" to complete and total mom and nurse panic mode. What do I do when there is no handy blue code button on the wall to summon help with? When I have no readily available suction, oxygen, or cut-down tray to do an emergency tracheostomy? I had brief, panic-ridden visions of the EMT who taught us how to give someone an alternative airway through the cartilage in their neck using either a ball point pen or an IV start kit. I was able to get the nipple out, and she was fine. But it was seriously the most traumatic moments of my life-as-mom, which is why I haven't written about it until today.


After a frantic 2 days without allowing any Nuks (or bottles, unsupervised), I did some frantic online research.  At the recommendation of some parents whose adult children have Down syndrome and still have lots of oral stimulation needs, I purchased some old fashioned, one-piece, natural rubber pacifiers from Amazon that are reportedly more bite resistant. And boy-cotted any pacifier that has any visible damage to the nipple. She loves them, even more than her old Nuks, and they have the bonus of having a round handle that is very thick and okay for her to chew on when she feels like chewing instead of sucking.

she still loves to pinch the web of my hand
I realize if you don't have a child with special needs or brain development issues, this probably sounds crazy to you. And perhaps you are thinking I should exert a little more control and take away the Nuks and stop the chewing on things that aren't meant to be chewed on. All I can say is, I wouldn't have "gotten" it either, a year and a half ago. But I do now. This is something that is a deep need for her, and seems to help her maintain normal function at other times throughout the day. Without the chewing and sucking release, she is reduced to a sobbing baby-child who simply cannot focus on anything beyond the need that is not being met.

So, the long and short of it: if your child has epilepsy and uses Nuks, think about converting to the bite-resistant kind. And Amy is doing fine now. Only one more seizure since we got her meds back up to full strength.
new skin :: old skin. all the same. suffering skin.
People have also been asking frequently about the results of my annual radioactive iodine-131 whole body scan. I did write about it, but apparently not flamboyantly enough. Usually it's in the context of massive cheering because everything is negative or massive soul-searching because it is positive and I still have cancer and I feel like maybe this year I'll die from it. BUT. This year it was kind of neither. My scan was "clean" (no obvious metastatic cancer) but my labs were still positive (down from 3.5 last year to 0.9 this year) for cancer. At first, I assumed this meant my diet was working, and felt depressed because that means I have to stay on the strict no sugar/no starch/no over-the-counter medications (like ibuprofen, which sometimes I think is nectar from God in pill form).

I got a little more news when I visited my regular family doctor this week for help with my arthritis, which is not clearing up (I am on a course of strong anti-inflammatory medication to treat it, then steroids if that doesn't help). It appears that the injections I received to prepare my body for the radioactive scan did not work this year. My blood level was supposed to climb to at least 75 and only got to 11. In short, this means that my cancer was still suppressed when my blood was checked for cancer and I had the whole body scan. Which means that neither test is conclusive. And the fact that cancer was still present in my blood although the cancer was suppressed at the time is concerning. My doctor was going to speak to my endocrine oncologist about it and told me I might think about having the test repeated in June or July. I won't know for sure until March 14, when I see my endo-oncologist next. But that was extremely bad news. Not extremely bad in the sense that I'm dying or anything. Just extremely bad in the sense that the trial goes on...and on...and on. I won't be declared "cancer free" until 2013 or 2014, assuming my treatment and diet continues to suppress any more cancer growth. I will be "in remission" until 2018 or 2019, five years after I am "cancer free". Somehow that 7 or 8 year weight is just...oppressive. I can't even imagine my life - my kids will be 15, 13, 12 and 10. Weird. It is so strange to think of living with this for that long.

And so I plunge again into the cold water of disappointment. This season of "wait" lingers on. I buy books on emotional recovery and finding a way to praise and letting go of the life you think you should be living. I peak in on freedom on the blogs of this Christian and that who has found a place where doubting/trusting co-exist, or where loving and longing don't quite make the heart break.

And I sigh and just keep doing it: read, study, flail, pray, praise, repeat. The personal liturgy. Even in this. Even in this. (2018 isn't that long to wait, in view of eternity, right?)

The disappearing comments

Note to my regular readers: I changed my comment system to a better one, and all the old comments have disappeared. They are still there - just not visible anymore! Luckily I saved the ones I liked best in a permanent folder that I revisit when I am feeling ineffectual...unlovely...(fill in the blank with negative emotion directed at self).

Now you can have either a pretty quilt square (if you choose to remain anonymous) or a photo of yourself show up next to your post, and I've done away with the nasty Blogger word verification system. You can also click a quick "like" or "dislike" button at the bottom of the post, a quicker form of leaving feedback. To access these features, just click the "comments and responses" line at the bottom of the post - or click on the post name at the very top, and the comment window will automatically show up. Hope you enjoy the improvements...and comment more??

To be "beloved"

What a weird, backwards gift to know through and through that I am empty . . . empty enough for Him to fill me. The fact that I am limited means I am made to overflow. "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." (Romans 15:13 NIV) ~from Shaunie's Up the Sunbeam
I see it all around me...and I still don't believe it. Does anyone believe it, about themselves, I mean? Maybe it will take another 30 years to seep through the cracks of the brokenness, the thick skin of disbelief, the thousand lies we've believed about how worthless we are, the even the Bible truths that feed the dichotomous picture of humans as the image of God yet fallen and depraved?


And then, too, actions always speak louder than words. We feel beloved when it's the kiss and wild hug in the park, the unexpectedness in the joy of just being together overwhelming all those walls we've built up. We don't feel beloved when the loving hand suddenly slaps, the one who speaks the deepest love also turns suddenly, and it's anger and venom. This endless cycle, ashes, ashes into beauty, beauty for ashes, repeat.


The wedding day in the cold snow when you clutch each other as tightly as two humans can, and the smiles spill out and the nerves fade, and you feel almost purely joy for a brief window, no in between, no mixed emotions. Just bliss. How do you get back there? To the pure emotion?



When she chooses, despite every past difficulty and sister squabble and friction in shared space, to hold your hand as you walk into the water together. That's beloved. Beauty for ashes. The transformation in the moment, the moment you can see you are beloved.



For thirteen years I have loved Jesus Christ and in that time I’ve listened to many folktales about Whose and who I was. The voices of those story-tellers waxing long had mostly belonged to folks who were afraid. Frightened men and women who had learned to abandon the precious limp of their belovedness. I look down at my naked feet and stutter a meager prayer of thanksgiving that I am numbered with the afflicted whose gait testifies of the one true story of the beloved. ~Laure at Love Poems to God
"My sins, my sins, my Savior!
How sad on thee they fall,
Seen through thy gentle patience
I tenfold feel them all.

I know they are forgiven;
But still their pain to me
Is all the grief and anguish
They laid, my Lord, on thee."
~ quoted by Spurgeon in "Faith in All It's Splendor"~

True hope never minimizes a problem in order to make it more palatable and easily managed. For the Christian, hope begins by recognizing the utter hopelessness of our condition and the necessity of divine intervention, if we are to experience true joy. Any personal change that can be achieved solely through human, in contrast with supernatural, intervention will neither satisfy nor change our heart. A proper focus on the deep wound is therefore neither negative nor does it promote despair. Rather, it sets the stage for the dramatic work of God. Love can be defined as the free gift that voluntarily cancels the debt in order to free the debtor to become what he might be if he experiences the joy of restoration. Repentance is the process of deeply acknowledging the supreme call to love, which is violated at every moment, in every relationship - a law that applies even to those who have been heinously victimized...Love silences explanation, penetrates excuses, and humbles the heart, preparing that heart to be captured by the gospel of grace. (from Wounded Heart and accompanying work-book by Dan Allender)

The official beginning


We called ourselves "Thul Homeschool".


But it felt sort of unofficial.


Until our first field trip, and getting back into the swing this January,
post cancer scans and epilepsy monitoring unit and holidays and snowstorms.


We topped off a trip to the local museum with a trip to the local Culvers.
Sticky, and sweet, and the perfect crowning treat for our first 
Field Trip with a capital F and T!


Susan was along, just for fun.



Caleb's newest, "I'm a boy and I'll be weird just to be weird" face.



Topped off with a small Wednesday miracle, an "A" and a "4" from Amelia,
courtesy of Wikki Stix, raved about by mothers of special needs kids on Amazon.
We've recently switched to natural rubber pacifiers, which I added to the
special needs shop I have created in Amazon as well. I'll have to tell the story...

but not today.
Today let's think ice cream. And miracle waxed-yarn letters!

On the perfectly level ground

Worthlessness is a lie. Hell is trying to isolate you so that you can be tormented easier. Call out the lie and reject it. Your failure gives Satan words to use against you, but he’s a liar. He’s a liar because Jesus took all of the accusations upon Himself and paid the penalty for them. Satan will do everything he can to get you to forget that. But God has no recollection of your sin, so don’t live according to something that God doesn’t even consider. The Truth sets you free. When the accusations come, know that they are against Jesus, not you. That’s why the accusations become a lie. When you are tucked away in Christ, the accusations are about Him and they hold no water. You are hidden away in Him. He took your sin (past, present, future) and nailed it all to the cross so that you could be free. It’s not a freedom so that you can live selfishly. It’s a freedom to grow and become so that you can be used to pour out His Love. ~Head to Heart, Grace Is For Sinners

It is the door unlatched that you leave closed.


It is being earthbound by cobwebs.


The ropes that bind frayed and whisper thin.


It's the smile you only smile in the dark, for fear someone sees.


It's the throng you never imagined pouring love into the hole of your grave.


It's the universe thrumming with beauty on the darkest day.


It's the Grandmother's touch you've long forgotten.


It's the sister's hands you never feel helping you from behind.


It's the music He plays when you think your fingers are doing all the work.


It's the heartbreak of moonrise on blackest night, light in relevant darkness.


It's the dogeared pages of a book in the outstretched hands of a best friend.


It's the smallest miracle of everyday.


It's the Mystery.

It - the law-shattering, ground-breaking, soul-rending joy that surpasses all understanding and changes the way you see absolutely everything - is Grace.
But herein lies again the wonder of the gospel, and here again is where we can be brought to awe because of its far-reaching power. For the gospel is the only answer for those, like me, who distort the gospel. There is grace for us, too. When we preach the gospel to ourselves daily, we will find that God will tear down the rungs of our carefully constructed ladders. And when those ladders are broken into shards and splinters, what will be left towering over the piles of rubble is the wooden beams of the cross. And we’ll stand there at the base on perfectly level ground. ~Today's Gospel is Tomorrow's Law, Michael Kelly

Death is easy you don’t know you’re a ghost
The fee is taken out nice and slow
While you’re walking around with your cardboard crown
We think we are kings
We think we are kings

Wisdom warned us but our flesh is strong
we’ll find our own way we’ll get along
Who knows what we need
We want everything
we’re living like kings
living like kings

But
life cost so much
Life cost so much
Someone paid for the damage
the damage we’ve done
How else do you explain all these open graves we’ve got
Someone must have paid
‘cause life cost much

A law of justice was long before and all the people here in this world
We hid our souls in shame
how could we be saved?
send us a King
send us our King
~Life Costs So Much, Christa Wells~

There are no orphans


My favorite t-shirt is a bedraggled, stained yellow one from Cafe Press that states, in large, bold type: "My favorite Book says we're all adopted." (Romans 8:16, Ephesians 1:5)


Have you ever thought how many in the Bible - key characters, even? - were adopted? November was "adoption month", but it came and went without a post from me. How do you feel about adoption? Would you open your home to one of the 150 million children needing a home and a family to call their own? We are called to adopt, someday. We don't know when. But we pray daily for the son or daughter that will one day call us "family" through the miracle of adoption. Pray with us? Adopt a sweet boy or girl yourself?

Life in color

You don’t have to ask me why
Because I know you understand
All the treasures of my life
Are right here in my hand
Suspended in a moment
No more breath to catch
If you hold on to your end
Maybe we can make this last

This is the greatest time of day
When all the clocks are spinning backwards
And all the ropes that bind begin to fray
And all the black and white turns into 
colors

I don’t want to build a wall
Or draw a line across the sand
Because there’s room for one and all
And this land is our land
Oh I hope this can go on and on and on
Before the skipping stone hits the surface of the pond
Oh I know that life is never very long
One second, then one minute, and then its gone

You want to sink into the colors on the wall
But all the while you are the brightest of them all

This is the greatest time of day
When all the clocks are spinning backwards
And all the ropes that bind begin to fray
And all the black and white turns
This is the greatest time of day
When there’s no you and there’s no others
And all the rules grow wings and fly away
And all the black and white turns into
colors
~ Colors, Grace Potter ~


The winter sky washes everything out, white on white and punctuation of black, the vistas of these thousand miles in January. This barn, the one with the faint green room, was shot in color. But you'd never know to look at it.


Bleed the Gospel of grace and you get black and white. You're walking through the streets, hair in your face, crying out, "Unclean! Unclean!" (the only way to read through Leviticus in one day without falling asleep is to make up Monty Python scenes in your mind. Yes, folks, they got this line from the Bible: Leviticus 13:45). It's a depressing landscape, but a powerful one. Catches your eyes and holds your stare, the contrast and the simplicity, the forms underneath so visible in black and white.


The power of the Gospel is that the Law is emptied of the power to condemn, the price of sacrifice already paid. The beauty of the Bible is in the whole of the story, from start to finish, creation to fall to law to Cross, resurrection, and finally reunion and glory. What was black and white is bled through with the red of Christ's blood, and washed away by the river of His love that poured straight out of His veins and straight into our hearts. 
I have discovered this principle of life—that when I want to do what is right, I inevitably do what is wrong. I love God’s law with all my heart. But there is another power within me that is at war with my mind. This power makes me a slave to the sin that is still within me. Oh, what a miserable person I am! Who will free me from this life that is dominated by sin and death? Thank God! The answer is in Jesus Christ our Lord. So you see how it is: In my mind I really want to obey God’s law, but because of my sinful nature I am a slave to sin. So now there is no condemnation for those who belong to Christ Jesus. And because you belong to him, the power of the life-giving Spirit has freed you from the power of sin that leads to death. The law of Moses was unable to save us because of the weakness of our sinful nature. So God did what the law could not do. He sent his own Son in a body like the bodies we sinners have. And in that body God declared an end to sin’s control over us by giving his Son as a sacrifice for our sins. He did this so that the just requirement of the law would be fully satisfied for us, who no longer follow our sinful nature but instead follow the Spirit. But you are not controlled by your sinful nature. You are controlled by the Spirit if you have the Spirit of God living in you. ...Christ lives within you, so even though your body will die because of sin, the Spirit gives you life because you have been made right with God. The Spirit of God, who raised Jesus from the dead, lives in you. And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you. (Romans 7:21-25, Romans 8:1-4, 9-11 NLT, emphasis mine)


This tree against the blue twilight sky was amazing. These are the colors, untouched, of the dusk just before the last light of the sun and before the first light of the moon, in winter, in Wisconsin. That slow time of day when it feels like the hands of the clock stop their ticking and God puts on a display every night in the winter sky, from the deep cobalt of this twilight-lit tree to the glorious, majestic purples and oranges of the sunset on a clear day.

The colors are beginning to seep back in to the winterscape for me, and it dazzles and almost hurts the eyes. Sometimes just doing the next thing is the way to let the color bleed through vibrant to your silent, paralyzed brain. So, I've decided that, after months of listing my thanks without numbers, I'm going to start my list that counts to 1,000. A list of blessings to peel my eyes away from the gaping wounds and white-on-gray that surrounds, and focuses these tired eyes back on the glorious little details.

Number 1 on my list of thanks is the blessing this lady, who probably doesn't know she's speaking for the one true King, has saturated my days with some new songs that cry GRACE in a black-and-white world. (Isn't it an auspicious name to have, if you're going to sing about truth, "Grace Potter")



2 : the perfect perpendicular of my daughter's first ruler-guided Cross drawing
3 : a husband who tenderly draws out my tears when I really need to let tears fly
4 : the same man doesn't ever spit condemnation my direction, whatever I deserve
5 : Beet & Sweet chips to dip in my beans during a football game, boon to a low-carb hater

Next week, I'll have an excerpted list of the blessings of a whole week, numbered. Join me if you think you need a dose of gratitude to counteract the muddiness of life. Read more about it here.




FaithBarista_FreshJamBadgeG

Goodbye, my friend, I hate to see you go

A long-time cancer "acquaintance" through the internet, who offered me much support and resources throughout my own journey, passed away today. Please stop in to her blog and offer her husband your comments if you have could at Daria's Living with Cancer blog.


My Bible-in-90-Days reading took me through Numbers a few days ago (yes, and now I am all the way through Judges...it's amazing!). The story of the manna hit me hard, and then I read it again in One Thousand Gifts, my current book of "wow!"

Manna literally means "what is it?" A mystery. Can't put your finger on the texture, flavor, color even...if you read the description, it's very amorphous. God feeds us with mystery. We can't quite label it or put it into a box. That's why it's called faith. I played around with the above photo of the feed spout at the York's horse farm, mulling over these things. Thinking about friends dying of cancer. If you enjoy it, click on the photo and you can save the large size to your computer and put it up as a computer background like I did. You can also download it even larger from Flickr.


What am I going to call this disaster of a post??

I am drinking out of my husband's cup this morning because I miss him. Al's Breakfast. I miss that, too.


If I'd never known the joy of him, I wouldn't miss him. If it weren't for the clouds, would I ever notice the sun?







I nearly dropped my book last night when I read these words, the words that echo straight from my soul and describe my paralysis as God's saint and matron of my household:
I think I can brave this Beauty? Not an empty, tinny beauty but a Fierce Beauty, Flaming Fire who burns through the thick masks and leaves the soul disrobed. I am naked and ashamed. I know how monstrously inhumane I can be. Raging at children for minor wrongdoings while I'm the one defiling the moment with sinful anger. Hoarding possessions while others die of starvation. Entertaining the mind with trivial pretties when I haven't bowed the head and heart in prayer longer than 5 minutes in a week. My tongue has a razor edge and my eyes have rolled haughty and my neck has been stiff and graceless and I have lived the filth ugly, an idolater, a glutton, and a grace thief who hasn't had time for thanks. What am I doing here? I am filthy rags. Is sight possible? I've only got one pure thing to wear and it's got Made by Jesus on the tag and the purity of Jesus lies over a heart and His transparency burns the cataracts off the soul. The only way to see God manifested in the world around is with the eyes of Jesus within. Is that why joy hurts - God stretching us open to receive more of Himself? ~from Ann Voskamp's chapter, What do you want? the Place of seeing God, from One Thousand Gifts, available for purchase here, e-book download here, or audio version here
The verses, the Scriptures that I cannot...cannot...bury or ignore or turn away from or pretend are not True, they echo off her pages and I shudder in fear because I do not want this to be True. I want to be joy-filled and I don't want it to be a matter of contrast, a matter of knowing sorrow to understand joy, or sharing in Christ's sufferings to understand that just in the presence of God, and in a thousand ways in our darkest nights, HE is enough. I want only good, yet I am almost all only bad, and how can those two things live in the same sentence??

Surely, just as I have intended, so it has happened, and just as I have planned so it will stand. (Isaiah 14:24)

Does disaster come to a city unless the LORD has planned it? (Amos 3:6)

See now that I, I am He, and there is no god besides Me; it is I who put to death and give life. I have wounded and it is I who will heal. (Deuteronomy 32:39)

"Your eye is the lamp that provides light for your body," Jesus said. "When your eye is good, your whole body is filled with light. But when your eye is bad, your whole body is filled with darkness. And if the light you think you have is actually darkness, how deep that darkness is!" (Matthew 6:22-23)

Oh, Father, forgive...Should I accept good from you, and not trouble? (Job 2:10)

I've said it before: cancer loosed the hands that have been tight gripped on everything - joy, sorrow - I wanted control of it all. Cancer teaches you in a way that no pure joy could that you have no control over this life. Do you really think God hands down your blessings and then turns His back when the suffering begins? That this is not also from His sovereign hand?

Instead of closing my fists around my blessings, and closing my heart to the opening of suffering, I have got to get this lesson learned: I am simply a channel for God's glory and I have got to keep the floodgates from slamming shut. The spirit is willing, but the flesh is weak. (Matthew 26:41)

So easy in the newborn glow, the click of the camera stealing moments of joy and storing them for future reference on a dark day.











So difficult when the children scream in the hospital room and their souls are all crazy wild (like children's souls are, like maybe even they are supposed to be??) and I want control of this, too. I just want them to be quiet, serene, and in control.

I don't want the flip side.

I am still flailing, two and a half years into cancer. Thirty-one - almost thirty-two - years into my life. Nine years into my marriage. Eight years into mothering.

I need to learn to be quiet, serene, and in control myself.