The moments in between

We are home from the ER. Frustrated, a little scared, but home. So far a very similar experience as the early stages of Amy's encephalitis in 2009 - but we are very hopeful it will not develop like that situation did and that Caleb will improve instead of getting progressively worse. The doctors basically don't have an answer for why Caleb is having throat swelling and trouble breathing, so they advised home treatment with Benadryl and ibuprofen, rest and plenty of fluids. His chest x-ray and rapid strep culture were negative (not a big surprise, as we are probably looking for an immune reactive process, not a bacterial or viral infection).

Caleb is sleeping in our bedroom again tonight so we can keep close tabs on him. Please keep praying that, if this is a reaction, it will be short and limited and he will recover quickly with no further worsening or complications. And for swift and wise medical treatment and decisiveness on our parts as parents if he does get worse. It is so hard to know when to go to a larger medical center - but that is what we will have to do if he ends up as sick as Amy did in 2009.

We have gotten so good at fitting normal life in between crises, as a family. In between my ER visit Friday night and brief hospital stay into Saturday afternoon and Caleb's events of Sunday, we had a wonderful 24 hour period celebrating Aaron and Katy's birthdays with our St. Cloud family. I think it is this ability to rapidly shift gears from the "survival mode" demanded by crisis situations to the "thriving mode" you use in times of calm and peace that has allowed our family to continue to flourish despite a lot of hard times and high pressure over the past four years. It also helps that our kids have learned from our example to have a sense of humor about the curveballs of life! Upon learning Caleb was headed back to the ER tonight, Katy burst into a little song to the tune of "Back in the Saddle Again": "Back to the ER again, oh, it's back to the ER again, friends..." which had the girls, Caleb and I all giggling. Whoever said it first was right..."you might as well laugh or else you'll cry."

Please pray for my son Caleb

My 4 year old son Caleb had a really rough day yesterday. He had a serious head injury in the afternoon, running full tilt with his eyes closed into a large steel pole at a splash pad and knocking himself out. Later in the afternoon, he stepped on a very old (as in 1930's) rusty roofing nail, about 1 1/2" long, which went through his Croc and half way through his foot. It seems to have slid right along the ankle bone without piercing it, according to x-rays in the ER, which we were thrilled with, as it eliminated the immediate need for surgery on his foot. Because of Amy's vaccine-related encephalitis, Caleb is not immunized and can't be until we get more answers about whether the vaccine reaction is hereditary and shared by our other children. Caleb received tetanus immune globulin instead of a standard vaccine, which has a lower chance of side effects. However, today he is turning blue off and on, and his foot looks angry and red, swollen and sore. We are headed back to the ER shortly with him for more treatment of what may be either a reaction to the shot they gave him, or an infection in the puncture wound in his foot. We would really appreciate your prayers for his healing and safety.

A little shock

Just a note to ask for prayer. I was admitted to St. Cloud Hospital last night through the the ER after fainting multiple times. I went into shock, and experienced a severe drop in blood pressure. I had just been restarted on a medication for PTSD - Minipress (prazosin) - and even though I only took half the prescribed dose, it had the side effect of drastically lowering my blood pressure. If I had not followed my gut and had taken the whole dose, I would be in the ICU or dead right now. God is gracious! The medication is out of my system now and I am finishing up getting some more oxygen and IV fluids, then I should be heading back to my in-laws. I feel very run down and kind of dull mentally, probably from the physical shock. I just need some rest - and never to take Minipress again! - and I should be soon back to normal. Thanks in advance for your prayers!

Amy with the twin kittens the other day

Campground ladies, sing this song...

We haven't been to church camp since a fateful, fearful time in 2010 that changed everything for our family. I felt a little like I was walking on broken glass...but we went, we relaxed, we made friends, we got bug bites, and it was all very normal churchy campy stuff.
I will go before you and make the rough places smooth. (Isaiah 45:2a)

A hammock bought for $1.25 outside San Salvador in 2001 provided many naps...

...and sisterly swings.

There were the usual kid antics, smoke in the eyes, and dirty toes.

And we had a little extra fun with water balloons, a tradition of 20 years
for this church we're calling home. (from the looks of it, someone took it quite seriously.)

(for Thul kids, nothing really gets done without sticking out your tongue.)

Rosy manages to add grace even when pitching.

Katy was trying out for the major leagues of water balloon baseball
(and had the wettest hair to prove it - the little kids were thrilled that
she didn't miss a single balloon and smashed them all to smithereens.)

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. (Deuteronomy 31:8)

a Love Letter to the Bodies of Women Everywhere: What I Learned from (and in spite of) Fundamentalists

I was taught to be modest. When I was a little girl, my mother sewed me frocks of gingham with 1980's Holley Hobby prints and Strawberry Shortcake playing across my skirts. They always came to the middle of my shins, and my shorts down to the tops of my knobby knees. I wore cut-off jeans and baggy t-shirts and I wore long hair because my mother thought it was the prettiest kind of hair on a little girl and also if a woman has long hair, it a glory to her: for her hair is given her for a covering (I Corinthians 11:15).

I understood from the church and the people there that a women's body was a fearsome thing. That it had the power to turn heads, to pervert the thoughts of men, and to destroy her own life if she unleashed it in inappropriate ways.

But as my mother covered me, I learned other things. I learned that my body was powerful. She showed me how strong her body was, nursing babies, hauling furniture to 'redecorate' our house, dragging wood over to the furnace in the morning, gardening from dawn to dusk. She showed me that it could be sensual, showing up for our one hour morning devotions (study of the Bible for you non-Fundies) in a lace cotton nightgown that draped appropriately to her ankles but had a heart-shaped neckline she always covered up with a thin beaded cardigan. I saw how my father kissed her, and how her body swelled up to fill the space between, and I understood that her beauty had a place to flourish.

She was also not the type to throw out old traditions just because she was being told to do so now, and I remember days she let us loose naked to run in the rain - the boys first, with me inside, nose in a book. And while they were in a warm bath, she let me out into the warm summer rain shower, running free in my undies. This was not something fundamentalists let their children do. Looking back, I always wondered if it was the rhythm of living in the woods or the Native American in her that nudged her to send us out naked in the sun or the rain - always appropriately segregated by gender.

At 13, I wanted to cut my long hair. After years of curling it Shirley Temple-style for church on Sunday morning, my mother let me cut it - just the way I wanted - without rebuke and without crying a tear. I cut it as short as was socially appropriate for girls in the '90's, and she never said a word other than to call me beautiful. My clothes remained an issue of some dialog all the way through high school - and she often sewed something perfectly beautiful for a special occasion because we couldn't find something to agree on from the store racks. She whispered verses to me, even as our church began to crumble, the pastor more intent on studying Greek and Hebrew than watching over what his own daughters were wearing or how they were acting. Don’t be concerned about the outward beauty of fancy hairstyles, expensive jewelry, or beautiful clothes. You should clothe yourselves instead with the beauty that comes from within, the unfading beauty of a gentle and quiet spirit, which is so precious to God, she whispered to me. And we read it from a new version of the Bible together - New Living Translation - because I was in college now and my bruised and bleeding heart couldn't make sense anymore of the "thee's" and "thou's". This was also something fundamentalists do not do. King James all the way, 'til death do us part.

In college, I wore shorts that were too short, and I made other bad choices, and she whispered, do you not know that your body is a temple of the Holy Spirit within you, whom you have from God? You are not your own, for you were bought with a price. So glorify God in your body. (I Corinthians 6:19-20) I'll never know if it was the short shorts or the way I called myself trash in my most secret places, but I did attract the wrong kind of man, and I almost married him. If my mother hadn't whispered Holy Spirit into me from the time I was a little girl, let me run in the rain and hugged my naked body, hadn't called me beautiful with my short hair, hadn't seen me all those years and all those mistakes and misunderstandings before - would I have walked away?

You may not have a mother like mine, wise and wonderful. She might not have told you your body was strong. She may not have shown you it was sensual. She may not have watched over your body when you were young, or helped you spread your wings at just the right times when you were older. She might not have had the guts to challenge your short shorts in college. And she may never have whispered to you that you have a price far above rubies when all the world seemed to be saying you were worthless, the same old same old, just like all the other millions of girls with a fleetlingly pretty face.

This is a love letter to YOUR body. When I look down, at 33, I see lots of bumps and bulges where I wish there weren't any. My hair is as short as it was at 13 years old, but this time I didn't choose it - cancer gave me this haircut. Just when I am coming home to realize the beauty of my body, it seems like it is all falling apart. Maybe bad decisions are coming home to roost. Maybe you have tattoos where you wish you didn't, or marks from a bad relationship that no one but you can see, places where you've been used or abused or unloved or unnoticed. I have them, too.

But it wouldn't be redemption, sister, if we didn't need to be redeemed from something.

Paul compares the church to a body, and the words he says can speak volumes of healing as we look downward at the imperfections rising up to look us in the eye. 
...the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together. (I Corinthians 12: 22:26)

What parts of you are weak? Aren't they just as necessary as your strong arms? What parts seem dirty or unspeakable? You are honoring them by covering them when necessary - but also by being free with your body and loving those parts just like all the rest. Is it your belly roll that doesn't deserve the light of day in public? How about when your baby curls his feet into that roll while you snuggle him? Isn't it delightful that it's there for him to feel, soft and safe and motherly? What about parts-that-shall-not-be-named? How would your feel in the long run if you discarded those because they caused you problems once a month or you have bad memories of ways you wished you hadn't used them in the past?

Don't look down and see the ugly. Don't look down and see the bad history, the hard times, the inconveniences. You're gifted with the most mysterious, celebrated, and rhapsodized item through literature, cinema, art, and culture, all through the ages. The feminine body is a beautiful and wonderful thing. 

If one hidden part of your body is honored - that part that you can't make yourself call beautiful, just try to call it beautiful once! - all will rejoice together.

I was raised in a "fundamentalist Bible church" (outsiders have another, shorter name for this type of group). You know the type - a single dictatorial pastor using a hellfire and brimstone preaching style who man-handled a small congregation into following him because THIS church was the only true church and WE were the only "believers" in a near-apocalyptic era teaching real Truth. The spiritual abuse in this church ranged from extortion of money to covered up sexual abuse, shunning and twisting of Scripture to a free pass for the pastor himself and all his family. While there are many negative things to dwell on when thinking back to the years I spent in that church, from age 3 to age 18, there wouldn't be much to be gained by doing so. For the past few weeks, events in my current life have been bringing up old sources of pain from those years. Instead of dwelling on what went wrong that has contributed to my brokenness today, I am turning my mind instead to the things I learned there that have made me a better person today. This week, I am publishing a series of posts titled "What I Learned from Fundamentalists". I know many of my readers have painful spiritual histories, and I hope you will be encouraged by this series. Please pitch in by sharing your own experiences in the comments section! If you are interested in writing a guest post, send me your idea via Facebook or Twitter using the link just below the header.

Today, the focus is body image, inspired by the SheLoves synchroblog A Love Letter to My Body that took over the blogosphere last week. For more inspiring stories, consider reading three of my favorites from Elizabeth Esther (another former "fundy"), Sarah Bessey and Joy in This Journey.


I ran out of the woods once, when I was seven I think, and I could feel something fluttering at my ankles. It felt heavier than gravity, magnetism, alive - as if the back of my body had unraveled into strings and I was disintegrating, smaller and smaller, into atoms, bosons - the whole of the woods the unseen entropy of a black hole gaping, choking me back into nothingness, lost forever. 

The clearing in the woods used to be a magical, Narnian kind of place, with dappled sunlight diddling down through aspens and long waltzing grass that sprouted just there on the forest floor, because of the light. I read Bridge to Terabithia and that clearing was my Terabithia, and after it became the landing zone for my torment when I was seven and eight, I thought maybe I'd reclaim it someday with my little brother, like Jesse in the book did. But it never happened.

Now I am in my 30s and for a long time I've lived with torment, until it has become like water washing over a river stone, so much a part of life that you don't even notice the layers of self washing away down the stream.  Torment comes out of nowhere and never like a train through the dark, with the noise of wheels clacking steel and a whistle to warn you. One night you sleep like a happy mother of children, and the next night you close your eyes and all the people you love, those faces you cup between your hands and call holy and beautiful, they twist into awful visage and become villains of the very worst kind and your heart is broken over and over. Broken worse then the worst break-up you ever had. Broken like if your daddy ever said, "I hate you," or you were 3 and landed in foster care, or maybe broken in some small way like Jesus on the cross when He had to look all that evil in the eye and say, "I love you anyway." 

You wake between each nightmare and in that panic in the midnight black you try to remember just one verse to latch on to, because your mama told you the verses will keep you from sinking, a verse to pull yourself out of the ocean of fear. 

A verse comes floating out of the deep, and off your lips in the wrinkled pentameter of breathlessness and half-memory:

What time
I am
I will

In those few moments between each nightmare, when you are fully awake, the night is just night, and people just people, loved ones sleeping and breathing. Out on the porch, the air is velvet with the moisture of mid-summer, and you bring the dog out with you for company. 

Because you can still feel the fluttering around your ankles, no matter how many years pass, no matter how many times you run out of the dark woods without getting trapped, no matter how many staircases you make it to the top of without being pulled down...they are still there, nipping at your heels and laughing because they've got you running scared.

The husband sleeps, and the children sleep, and over the grassy hill your mama and your papa sleep, too. No one is awake at 1 a.m., 3 a.m., 5 a.m. when you can't shake the nightmares. Just the dog. She doesn't speak or make a sound. But in those honey eyes with just a hint of red sunset in them, the way the lids pull up and the bottoms droop - those eyes say, I see your pain. I know you're afraid. And that is what is saving me these long, sleepless nights.

She lays her chin on my bare, unshaven leg, and the fluttering around my ankles stills. We breathe together. She lets out a long sigh (ending in grumph) because she can't take my pain away. And I because I can't chase it away. I say it slowly, this time a prayer, a talisman for the next time I close my eyes this night - please, Lord, let me be at peace.

What time I am afraid I will trust in Thee.

Far away in a gypsy house

I rolled over to my right side, and a dream came to life birthed entirely of the right side of my brain, where poetry occasionally springs from, my fingers are loosed to play untamed melodies on the piano keys, and the smells of my babies are kept in a treasure chest of memory forever.
Painting by WhitSpeaks available on Etsy
The sunset was turquoise and gold over the slow waves of an unknown sea. I sat high up the bluffs next to a gypsy house listening to my third daughter sing fairy music while she cooked me a cheese and egg pie in an outdoor oven built of the gray boulders of the shore. A brown young man dragged his feet up the dusty road, carrying a basket of crusty bread. He stopped for a while on our stoop, and sold me something everyday and another loaf scented with rosemary which I dipped in olive oil and laughed as it dripped down my chin. My hair was long again, and gray, and I had it tied up in a scarf that blew across my back. My skirts jingled with bells and beads and my feet were brown from the sun. Here it was good to be a round woman of my age, because otherwise the villagers might whisper all kinds of ailments plaguing you. My husband climbed the gray rocks with a smiling dog, gargantuan and red, whom he called Newfie. He sat down beside me and I ran my hand down the familiar sudden curve of his strong back, with sand and salt still dripping from his brown curls, and we ate the cheese pie hot with rosemary scented bread and Amy's belly laugh to keep us company. Behind us were caves for exploring by day and haunting by night. My son was on the shore in a lone patch of sunlight streaming down from the gathering clouds, his cropped hair and all his teenage sinews lit golden. The young breadseller visited with us in a language I was only beginning to know, and I tried to tell him this great Truth I saw in the sunbeam and the son on the beach, that somehow it was moments like this that made me so very happy, because I knew I was never alone.

The eldest girls came traipsing up the road with empty bags slung over their shoulders and their laughter on the wind. The eldest was industrious and sewed skirts of many hues from the gauzy floating fabric one can only buy in markets in countries like this, and her younger sister, the artist at large, threaded beads and shells and bits of sea glass across them like moving paintings, and they always sold out when they went to the market on a sunny day with a bag full of their skirts.

In my gypsy kitchen there was a small table, as red as the reddest sunset, a slab cut from the burl of a thousand year old tree and polished until it shone like glass. At night these almost-grown children slept in hammocks on the porches and in the open spaces, lulled to sleep to the tunes of the village below and the surf on the rocks, the old brass bells foraged from ruins and clinking glass of lobster trap floats we'd strung up everywhere. They'd learned their math in the village markets and eaten only what grew in the spaces around this house and hill. We did almost nothing on paper anymore, except to read great books and stories you could get lost for days wandering in.

I stood in the dark, listening to the sounds of the little gypsy house, and thinking about all these things, how different they were from any dream I might have dreamed for them long ago in a straight-backed yellow farmhouse in a very American rural field.

And somehow, when I woke up, I knew that I had dreamed of heaven.

Dragons and Knights

I hear it like the drum beat of my own heart throbbing for sins I cannot repay. I feel it like the taboo of words of confession long on my lips but never sufficing. But He interrupts me in my mutterings of confession, and a simple image crushes my confessing lips until they are bruised with anguish. For He has bled, drop by drop, for this sin I cannot forgive myself for. He has shed every tear, sweat blood in Gethsemane, and hung naked on the tree to cleanse this sin from the book of my life.  Erased! Erased! Erased! He calls, as I linger on in self-torment. Does my blood mean nothing to you? Would you shed your own, the sinful river of blood running through human veins that cannot repay, when the perfect Lamb has already been slain for this sin you call unforgivable? Would you spend your days in torment in a prison you've built yourself, when everything I own, I, King of Glory, I would give you freely? Joy unspeakable, cup running over, and you trade it for bitter hyssop and a cup full of vinegar and days full of tears?

And as He whispers, deep in the silent night as I sit on the porch steps and watch the storm clouds rolling in, my house asleep, and my sleep destroyed by nightmares. He whispers something of a princess whose crown was ruined long ago. He whispers He doesn't care; He sings of rescue. Something about a castle where that princess was captive. Something about throwing out curses and drawing lines in the sand, and gathering the stones that would have been hurled my way into piles instead (John 8). Restoring crowns, and redeeming all of us, sinners - scandalous, scorched and scourged - the beautiful broken. He has made us whole.

...reposting an excerpt from this post, humbled by my own words from March 9, 2011

It's nice to be a kid again

I've never once regretted my childhood. I think I had the best childhood of anyone I know. I know I was an old soul in a child's body. Looking back, I can see how abuse colored the way I was then. I can see how it stole from who I was. 

I'm in cancer remission now, and I look back on cancer, and I can't say I regret my four year battle with that, either. It changed me, no doubt. My children, too. But do I regret it - even one minute of it? No.

Today we were driving home from a doctor's appointment, the air laden with rain and cool for the first time in weeks. We turned off the air conditioning, opened up the windows and had a screaming contest as we drove down the country road. Caleb's was the most piercing, Amy's the most horrifying, Rosy's the most high-pitched, Katy sounded the most like she was dying, and mine was the loudest. We laughed and laughed, all the way home. The kids called me the silliest mom on the planet. They said I was just like a kid, the best friend-mom kids could have.

Maybe I didn't learn to be a romantic until I was in my 30's. Maybe I lost something of my childhood when I was eight, and so I get to do it all over again while my oldest is eight. Is that so bad?

With every loss, there's an opportunity for gain. Joy explodes through the cracks. No way am I going to waste time focusing on all the bad that got me to this moment. Because this moment? It couldn't possibly be better. And it wouldn't be possible without all that bad.
Thus says the Lord: “Keep your voice from weeping and your eyes from tears, for there is a reward for your work," declares the Lord, "There is hope for your future." (Jeremiah 31:16-17 exc.)

I need Your romance

Somewhere in the haze of girlhood I lost my sense of whimsy. All the symbols girls adore grew stale, cliché - no more doodled hearts and rainbows dancing in swirls across lined sheets of notebook paper. I stuck between the lines, wrote in Roman alphabet, and taught myself calligraphy instead of doodling.

It's what happens when your heart breaks too soon in life, I suppose. You give up on romance and turn to logic because it's ever so much safer. Predictable, calm, precise and controlled. Just like you wish your life and heart would be. Just like you've trained your emotions. Just like the iron fist you've wrapped around your tear ducts, the roiling in your belly that threatens to spill vomit whenever your thoughts drift away from math homework or history books and into the dark crevices of memory.

I didn't get romance back even for my wedding day. Joy, yes. My smile was wide and free, and I threw my arms around my new husband's neck with abandon. I let him carry me off to our honeymoon, but I wasn't going to write a poem about the sunset, even then. Babies were born, and I let myself be carried away to heaven and back simply on the indescribable scent of their hair. Still no romance.

It started to seep back in slowly, the romance of life.

Songs penned.

Photographs taken.

A tiny pad of postcard sized watercolor paper and a single brush and two tubes of paint.

A space on the internet for a blog that started out simply to relay a few facts about cancer, but suddenly burgeoned with the overflow of the soul as the dam nearly broke in the wake of emotions that couldn't be contained any longer.

In the days that followed the surgery that changed my life forever, one symbol crept back in. Not a rainbow, a heart, or a peace sign. A butterfly. Your thyroid gland sits just below your voicebox, in the shape of a butterfly with wings outstreched, ready to take the next breeze heavenward. It is a thing of beauty, tucked in secret deep within your throat. A piece of poetry straight from the Maker to you, a little love gift right where songs are created by your own unique voice, right where you speak and whisper words of love, right where your laugh is formed.

When I lost my butterfly in the throat, the colorful creatures floating on the summer winds became precious to me. Whenever I see them, I smile and tears well, all in the same moment. I am remembering the beauty He gifted me with, the beauty that was taken away by thieves in childhood's night, and the beauty that was reborn out of cancer grief - the eyes that see again beauty everywhere, romance everywhere, the whimsy and lilt and lovesong of life. If I'd never lost my thyroid to cancer, I'd never have noticed the butterflies all around me. I'd never be a doodler or a dreamer again.
He has sent me to provide for those who grieve - to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor. (Isaiah 61:1 & 3 exc.)

Dustpan devotional

It is a hot Saturday afternoon, and I invade their bedroom like the wind before a storm. How did it get so messy, after I just decluttered it a month ago? I wade through dirty laundry, picture books, discarded game pieces and noisy toys with flashing lights gone silent from dead batteries. Two fans have fallen out of windows and lie broken. I arm myself with plastic garbage bags, broom, a sigh of resignation.

I come upon a dirty little pink purse Rosy, my girly girl, has played with since she was a babe. This is where it gets hard. She has about a dozen purses, way too many for a small girl. But choosing which beloved ones to throw or give away? Tough for a tender mother's heart! This one has permanent marker all over it, and I know it has to go. But inside are white feathers she saved from angels wings she wore in a Christmas pageant 2 years ago. I hear the distant thumping of some tribal drum of childhood, as if I am intruder on the sacred, tearing down some structure of the child's heart as I toss things willy-nilly. I save the feathers, toss the purse.

I pause, pray, sigh, continue.

Everything left in this room is "good". Everything works, I've already sorted through it once or twice. There are no broken toys, no missing pieces, no bad authors...just worn out batteries and too much of a good thing. This is where it gets difficult...sorting out what matters from what is good. Dr. Suess: good. But I'd rather keep "Green Eggs and Ham" than "Oh, the Places You Will Go!"

It's so in my spiritual life, too. I'm 33, and I've been on this path for years. Sometimes I've wandered around in the woods, of course. But as you keep going over the same verses, praying over the same faults, working on the same character flaws, you begin to get down to the fine-tooth comb of life. Sorting sometimes becomes a matter of discerning between the good and the significant. I feel this way often as I prioritize in the arena of family life. Activities for the children - good or significant? Ways we spend our time or money - good or significant?

Our longing for something real, something meaningful, can be so intense at times. Even surrounded by our families, we can feel like we're just jumping through the hoops of our day. Mealtimes, bathtimes, bedtimes- check, check, check. But have we connected on a spiritual, relational level with any of these people buzzing around us today? I heard an analogy of the fish who hears about this amazing thing called water and swims all over the lake asking everyone he meets, "Where's the water? Have you seen the water?" It is as invisible to him as the air we breathe is to us. Perhaps it is so with God. We search all our lives for a meaningful connection with God, and in the vast empty void of the universe, we feel isolated and alone, as if He is never quite present with us. But the reason we can't see Him is because He is behind, above, around, and within. He is the very air we breathe. 

I trust that, as I continue to comb through our home and lives with an increasingly sharper focus, the real and significant will shine out, like the real quarters that caught the sunlight as they were about to make their way into the dustpan along with plastic coins from a Melissa & Doug money set. We, too, are made of silver, and we live in the refiner's fire, continually being skimmed of the dross and growing more and more brilliant and beautiful with each passing day lived out under His loving attention.
For he is like a refiner’s fire and like fullers’ soap. He will sit as a refiner and purifier of silver, and he will purify the sons of Levi and refine them like gold and silver, and they will bring offerings in righteousness to the Lord. (Malachi 3:2-3)
Linked with Joy

A little too slow, a little too fast

It's Saturday and the only blank day on the calendar this week. Aaron and Katy traipsed off to the creek for trout fishing in the 90 degree heat, and the other kids are out in the cut hayfield tossing the ball around. I take my first deep breath of the morning and begin to process all we learned at Mayo Clinic yesterday, the good news and the bad, and begin to Google and research the news about Amy's immune system and what it will mean for her future. I trust you want to know, too - a passel of dear readers who've followed every step of her journey from health to encephalitis to seizures and now her latest cancer scare.

Yesterday we traveled back down to Mayo to get the results of her immune system testing from a venerated doctor who is compassionate and personable. This doctor is a little older than myself, and is also just growing her hair back from her own cancer treatment. We laugh together about spiky bedhead and trade secrets about hair products for short, unruly course post-cancer treatment hair before getting into the details about Amy's testing.

She starts with the "good" news, as doctors always do. She has decided that she won't recommend Amy for a bone marrow transplant "at this time" - I breathe a slightly shocked and horrified sigh of relief to this answer to prayer, as I didn't know she would even consider such a thing once cancer was off the table! Apparently she has discovered something about Amy's immune system that would indicate a transplant might be necessary??

She holds out a sheaf of lab results and uses her pen as a pointer, guiding me through the results. Amy's bone marrow, she explains, is not functioning normally. It is not active enough. She thinks this is partly because it has become suppressed by an autoimmune response, which is evidenced by Amy's severe asthma in infancy and toddlerhood, and the autoimmune brain abnormalities (ADEM) she suffered post-brain infection in 2009 and 2010 (click here to read more about that history).

While Amy's bone marrow, one half of her immune system, is not functioning as well as it should, the other half of her immune system is in overdrive! Her lymph nodes and thymus gland are over-reacting to infections and invaders, and actually could be what is suppressing her bone marrow. That is why the doctor doesn't think a bone marrow transplant would work, because Amy's body would just suppress new bone marrow anyway. (Aaron and I wouldn't choose a transplant regardless, so we are thankful we don't have to argue this choice with the doctor!)

In non-medical terms, one half of Amy's immune system isn't working well, but the other half of her immune system is compensating for it by over-reacting. The early, non-specific reaction to infection is not functioning very well, so initially, Amy gets too sick, too quick from routine viruses and bacterial invaders. On the other hand, the specific, highly-tailored response of her body to specific infections that her body has identified is working very well, so she is able to fight off infections in the later stages very well. This is probably why her lymph glands are so swollen right now, after the infection is gone, because her system went into hyper-drive during and after the infection to make sure she fought it off completely. Her overreaction after the initial underreaction may be God's provision to keep her safe from the infections that seem to plague her little body.

The lump on the right side of Amy's neck is visible in this photo.
In the past week, she's developed visible lumps on the left side as well.
While it's never fun to get bad news of any kind, I feel peaceful about the "watch and wait" plan laid out by the immunologist. In general, I am feeling cautious about pursuing treatment for Amy. She seems to be regaining energy and happiness every day, and it seems foolish to me to disturb a little girl when she is visibly healing. I am very pleased that the doctors all seem to be reaching the same conclusion even though they have uncovered some new medical problems along the way.

Oh - one other tidbit from yesterday's appointment: the immunologist confirmed, conclusively and for the second time, that Amelia did, indeed, have diptheria toxoid encephalitis that was vaccine related in October, 2009. 

If you would like to read more about Amy's new diagnoses, click the links below to read some general information about the conditions the doctor found:

  • Secondary moderate immunodeficiency
  • Bone marrow transplant for secondary immunodeficiency (notice there were 148 patients but only 14 were included in the study: what happened to the other 134? Of the 14 included, 2 died and the condition of 2 more are unreported. Is BMT really that successful for t-cell immunodeficiency? Aaron and I are skeptical.)
  • A basic overview and diagram of the immune system, including the relationship of the lymphatic system and bone marrow. The green areas of the diagram are the parts of Amy's body that are functioning on "high", and the bone marrow is what is not functioning well.
  • Understanding where the cells of the immune system come from and how they differentiate to become either lymphatic or blood cells. If you are interested in stem cell research, this is a good introduction!
Amelia's frame was not hidden from you when she was made in the secret place: Your eyes saw her unformed body; all the days ordained for her were written in your book before one of them came to be. (from Psalm 139)

Coming unglued or unplugged?

Do you ever that day, the one where the world seems to be spinning twice as easily for everyone else but you? Everyone else is a better parent, a better spouse, a better daughter, sister, friend? Everyone else keeps a cleaner, more efficient house? Everyone else is living a Pinterest life and you're competing to be the next contestant on Clean Sweep or Supernanny?

I have those days, too. 

Even in my newly decluttered house. Even though I'm in cancer remission. Even though some people seem to think I "have it all" now because I'm balancing working part-time and staying at home, homeschooling my kids, cooking mostly all-natural or organic (supposedly), my husband smiles a lot these days, my kids seem to be healthy for the moment, and we finally have a church to call home.

Lean close, and I'll whisper a little secret: that's my highlight reel, sister. Truth is, I have pneumonia and a broken tailbone right now. I'd rather be in bed than anywhere else. I struggle to load the dishwasher once a day and get clothes drying on the line. Aaron is still cooking dinner most evenings, so I can collapse when he finally gets home to take over. Our finances will still be an unspeakable disaster until I get my first paycheck in October (and even then, it will be several months before we get things in order). The kids watch a lot of movies in the summer, and the only reason I feel moderately good about my mothering is that we live in the country and I can shoo them outdoors unattended for hours on end. We have the luxury of eating organic meat and dairy only because God provided some amazingly cheap sources for us from farmers we know, and the veggies and fruits we enjoy are mostly courtesy of my mom and sister-in-law who keep an immaculate organic garden next door.

And homeschool? I have only a sketchy outline of what we're doing for curriculum this fall. AND I have the luxury of being a second-generation homeschooler, so I get to relax a little more than those of you who are having a go at it from scratch. My mom did the homework and taught me how many moons ago, so I'm not stressing the details because I know it works. I have the PhD to prove her method is pretty effective.

Sometimes I need to slam my computer shut, get away from Facebook, Pinterest, and blogland, and remind myself that comparison has never done anyone an ounce of good. Getting good ideas to enrich your home from the lives and experience of others? Great! Piling on guilt and shame because your home office will never measure up to the single lady who runs a home business? Not so good. 

Psalm 73 put this into perspective for me. Even David fell prey to this fallacy. He got caught up in comparing his difficult life of faith to the easy life he saw the wicked leading all around him. He got tired of trying to use His human wisdom to figure out how God could allow such inequality. He almost destroyed the next generation by spouting off about it. And then He went back to the sanctuary, and it all became crystal clear in the presence of the Lord.

For me, going to the sanctuary means unplugging myself from all the devices that compete for my attention. Sometimes it's a few minutes of prayer swinging on the front porch in the sunshine, listening to the sounds of nature and the kids' laughter. Sometimes it's sitting in front of a fan on my crisp, clean sheets, reading a Psalm and breathing in-out, in-out. Meditating. It's almost like a physical act of eating, taking one word, one breath at a time, two gifts from God, breath and bread. Savor each. Release. Repeat.

Next time you're spinning out of control in a world of comparison, feeling less than and starting to resent the life God gave you to live, try it. Go to the sanctuary and see what God has to say. I hope He makes it clear to you - the value and beauty and greatness of the moments of your today.

All in vain have I kept my heart clean
and washed my hands in innocence.
For all the day long I have been stricken
and rebuked every morning.
If I had said, "I will speak thus,"
I would have betrayed the generation
of your children.

But when I thought how to understand this,
it seemed to me a wearisome task.
until I went into the sanctuary of God;
then I discerned their end.
How they are destroyed in a moment,
swept away utterly by terrors!

When my soul was embittered,
when I was pricked in heart,
I was brutish and ignorant;
I was like a beast before you.

Nevertheless, I am continually with you;
you hold my right hand.
You guide me with your cousel,
and afterward you will receive me to glory.
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
My heart and flesh may fail,
but God is the strength of my heart and my portion forever.

For behold, those who are far from you shall perish;
you put an end to everyone who is unfaithful to you.
But for me it is good to be near God;
I have made the Lord God my refuge,
that I may tell of all your works.
(from Psalm 73)

Linked to Joy today

To taste July

We quaff the cup of life with eager haste without draining it, instead of which it only overflows the brim / objects press around us, filling the mind with the throng of desires that wait upon them, so that we have no room for the thoughts of death. ~Oscar Wilde

The cup overflows so fast and furious, my feet are sticky with the drips that cascade through my toes and over flip flops all the summer day long. Joy is everywhere we go, at gymnastics class where Rosy's soul expands until it fills the whole room with its radiance, and the little kids do headstands and tumble like weeds in the corner, copying the instructor's every move. In October, I caught fire from a little book and dreamed of a clutter free house, and now finally in the damp July air the seed of a dream flowers full, and our garbage can overflows with broken toys, unmatched socks, scratched cd's and chipped dishes. The wood floors gleam in expanses of emptiness we haven't seen in this house since cancer came to call in 2008. The kids and I stop by the local thrift store today with a truckload of donations, and we sit in the parking lot in fits of giggles over the antics of a blow-up balloon man they use to advertise sales, flipping over and punching himself in the face in the summer wind.

It's the time of year when the summer sun hangs forever in the evening sky, there's the constant sound of laughter on the breeze, the sprinkler sends glitter cascading through the air and the crickets sing a different, mid-summer song.

Love is all hot and sweaty and altogether real, like midnight cuddles with naked kids sticky under the thin sheets with the fan blowing full blast through air as thick as velvet.

We've long since learned to quit listening for the other shoe to drop, and to listen instead for the tinkling of laughter like a spoon clinking glass, the panting of the dog that comes with the smile on her face in the hot afternoon, the smack of a son's kiss through chocolate and vanilla ice cream after snacks on the porch.

The hay's been cut twice, and the corn is higher than any of the kids. The oats are burgeoning gold and the whole earth smells sweet. The cows' milk is like candy from summer grass, and the farmer calls us to tell us our beef will soon be at the butcher's. Summer is half gone before it's half started, but I've never been one to look back at the pages already torn from the calendar.

We are reveling in summer. Every t-ball trick taught. Every bug bite to scratch. Every lake swum. Every frog song and cricket call. Every late night sing-along and early morning walk through the dew-dripping lawn. Every bonfire and every charred hot-dog. Every firecracker, every sparkler. One marshmallow, burnt or brown, at a time.

Oh, how we give thanks, for small gifts and large ones.

Oh, if there’s only one song I can sing,
When in His beauty I see the great King,
This shall my song through eternity be,
“Oh, what a wonder that Jesus loves me!”

I am so glad that Jesus loves me,
Jesus loves me, Jesus loves me.
I am so glad that Jesus loves me,
Jesus loves even me.

In this assurance I find sweetest rest,
Trusting in Jesus, I know I am blessed;
Satan, dismayed, from my soul now doth flee,
When I just tell him that Jesus loves me.
~Jesus Loves Even Me, Philip Bliss, 1870~

A thank-you video from Amy!

Just a little video today of Amy thanking all those who prayed for her while we waited for test results on the lump on her neck (plus some general kid hijinks). When I posted the good news on Facebook, 86 people "liked" my status update. As the "likes" kept rolling in throughout the day, along with the many comments praising God for His mercy, Amy kept asking, knowing each of those people were praying for her. She was so touched. After two years with very few friends in our lives - and none at all her age outside our own family - these friends who seemed to materialize out of nowhere to her 5 year old mind were such a blessing to her in a trying time. Here is her little thank-you. We hope you enjoy!

You can also click over to Youtube to watch the video (sometimes it streams smoother)

Griefwork: Keeper or thrower?

I skipped spring cleaning in 2010, 2011, and 2012. Twice a year, usually, I sort through closets, exchange out winter and summer clothing and shoes, find all the dust bunnies under beds and in heating/cooling ducts, eradicate the house of piles, and get rid of things we no longer use (like broken toys, knick knacks, books that no longer enchant me, and clothes we no longer fit). For some reason, in 2010, I froze. I couldn't do it. And as 2010 became 2011, it became overwhelming. As one season melted into the next, the piles grew larger and larger, and what was once a week-long task loomed almost too large to tackle. I was at a complete loss. I had no idea why I'd quit - and no idea how to start now, with the enormous back-log I'd created for myself.

Linking arms with aunts and mama, with grandchildren happy as clams up with grandpa and grandma for a week, I started the process on the main floor. I called it Operation Spring-Cleaning Catch-Up. It took about a day for me to realize what halted the process back in 2010. While I was cleaning the dining room table, which had become a sanctuary for piles of bills we couldn't pay and papers we didn't know what to do with, I kept coming across things that made my stomach turn. Old letters from church people begging us to repent and return back in 2010. Artwork I made while struggling through the worst depression of my life in 2011. Letters from my children when I was in the hospital, begging me to get well and come home to them. So much bitter, so much bittersweet.

Again and again, I had to walk away from the piles. Go out to the air on the porch, hot, humid and heavy with the July heat wave. The air felt as oppressive as my spirit. But the sun burned right through the darkness I tried to hide myself in behind my eyelids and lit up that dark room all the way to the corners...lit up those memories, those pieces of paper I was dreading. And as I watched, it was if they all caught fire and drifted away in cinders.

I realized I'd been living in a haunted house. I couldn't face the process of ridding the house of all this built-up bad. So it got buried on the table, or shoved under the bed along with an empty Oreo tray and a crunched up beer can, the refuse of another bad stab at coping. Cleaning it all out - the triggers of my grief along with all the evidence of my burying the grief - was like rubbing the dirt out of an old, festering wound. Hurts like *mmmhmmm while you're scrubbing, but there's hope like never before when you see those clean pink edges of a wound beginning to heal. A wound healing. A clean wound. One you can look at without curling back your lips in disgust.

Image credit: Dorothea Lange, 1936
Cleaning out my grandma's kitchen after she died was a lesson in hoarding. Her house wasn't chock-full like you might see on the T.V. show. But the cupboards were full of cans dating back to before I was born. She was from utilitarian German stock, lived through the Depression on a hog farm in South Dakota. To her, everything had a function and you'd eventually use it, if hard pressed enough. Now I wonder, is this where it all began, for me? Is this why I am a hider, a hoarder, and a saver when it comes to grief? Why I can't look it in the eye and toss it in the garbage can and wipe my hands of it and walk away?

Image credit
The other side of my family, my mother's side, are nomads. Native Americans and French Canadian voyageurs, people who lived sparse lives carrying only necessities and the clothes on their backs. My mother is decidedly better than me at saving a few key things to remind herself when grieving, and letting go of the rest. I doubt her grief would have kept her from cleaning her house for 3 years.

How about you? Have you ever faced such crippling grief or psychological pain that you had an extreme reaction to your surroundings in your home? Which reaction did you have - did you pitch it all and start fresh, or try to push it aside and ignore it? Can you identify with me when I say I've been living in a "haunted house"? How did it feel once you reclaimed your house?

Linked to Michelle

Freedom songs and answers that don't fit

My son is 4 years old, and he brings me wildflowers every day. He calls them "early Mother's day presents". One day I asked him to bring a vase to put a daisy in. He brought me a canning jar from the porch, which had already been home to several caterpillars and other bugs this summer. Much too large for a single daisy. I put the daisy across the top and set it on my nightstand, a tribute to the stage this sweet boy is in, simple gifts brought to Mama's bed in a chubby fist, a vase much too big for the flower but not too big for the expression of love.

I feel just so about our nation. My vote is a drop in the bucket, an often childlike expression of simple love for the freedoms I'm allowed here. I feel a reverence for the country I've been raised in, freedom running deep as life blood down from generation to generation, something we couldn't earn with our blood, sweat and tears now but was passed on to us from a different time. The problems we face today are many: poverty, social issues such as the definition of marriage, life and death, integrity in politics and business, and immigration. But to think that our forefathers lived in a time without problems would be to romanticize the birth of our nation as a simpler time. Slavery, social hierarchy, widespread poverty, lack of access to the most basic of human needs such as clean water, food supply, health care and housing, women's rights, worker's rights, landowner's rights, and issues surrounding Native people have all been large issues of our nation's past that still bleed into our modern problems. No one had a clear solution for those problems then, just as we lack clarity as we face the issues of today.

What I do see, all around me, are expanding hearts and minds on both the right and left - bloggers, friends, neighbors; Christians and non-Christians - all voicing concerns, empathizing, seeing needs, and trying to address them in whatever way they can. I hope this is a time of revitalization of our country and a turning point in history that we will look back on as a victory in the future. I can feel the shifting sands under my feet and, as I do whenever change is afoot, I feel a little unsettled. I worry about what socialized medical care would mean for my family, because we support our family by working in health care. Yet we pay tens of thousands of dollars every year in medical bills ourselves, so who knows? I watch, and listen, and I hold my canning jar vase in my hands, silently. All I know is the solution I hold in my hands is probably not fitting for the bouquet.

This July 4th, I am just happy to be part of the masses lighting firecrackers, singing anthems, raising flags, smiling wide for freedom and history and shared experience and joy over this great nation. 
I am God, your God. Every animal of the forest is mine, and the cattle of a thousand hills. Call upon me in your day of trouble, and I will deliver you, and you will honor me. (from Psalm 50)

How I quit gasping for air

An image swirled up from memory, her third birthday. She wore a black coat with a hot pink hood, and her blond hair caught the warm October sun as we ran through a park frequented in my own girlhood. We stood over a Colfax creek, throwing sticks down one side, rushing to the other side of the bridge to watch them pass beneath us on top of the swiftly flowing water. There lay the last leaves of autumn, brilliant scarlet and yellow, plastered on the rocks and sand of the creek bottom, shining in the rays that glinted through the bare trees. I lifted my camera and slowed the shutter speed to blur the rushing water and focus on those little gems of leaves lying still below the deep clear water. I didn't know it was an image that would save my sanity in the weeks - and years - to come.

Several weeks later, she lay semi-comatose on a hospital bed, and I was curled around her in the fetal position, trying not to disturb the tubes and wires, wrapped in a yellow plastic hospital isolation gown to keep whatever germs were making her so sick off my clothes. I counted every breath as it dripped from her perfect, still lips as if it were a pearl of great price, stringing them on a necklace of mother's memories to be tucked away forever in my treasure box of hope. One day, 39 doctors came in and out of that room, with their gowns, masks, protective eye shields, booties, hats, gloves. Their stethoscopes waved over her chest, they pried her eyelids open and pointed flashlights into the perfect hazel of her staring eyes. They hooked up electrical devices to her arms and legs and measured the seconds until her little feet and hands twitched when they sent current through the pads. But I was like the leaves at the bottom of the creek bottom, in the silence there with her. We were on our backs, facing the sunshine. In some other realm. They were just water, rushing over the top of us, and I couldn't remember their names or faces after they left.

Last week, a barrage of doctors lined up again on Thursday's calendar square, and I tried to swim with the current on top of the water, arms pumping, legs kicking, muscles aching. Every now and then, body crying for oxygen, I rolled onto my back and looked up at the sky, breathing beauty, sucking in strength for the next long stretch of swim. I forgot how to not breathe. Forgot how to not fight the current. Forgot how to find the bottom and lie still there facing the sun. Sometimes it feels so, like you have to fight for life, like it's something to be earned, and you put every ounce of strength into the battle. At the end of the day, you are wasted and spent, but have you a string of pearls to add to your hope chest to show for it?

Sometimes words are too much for me. I turn on Debussy and even the notes are like chatter. I open the screen door with it's creak, and I am in the sun again, the slow buzz of mid-summer's flies, the wind soft through the long grass of the field, the heat shimmering off the freshly cut hay. I can almost hear the world turning on her axis as the long summer day grinds slowly on. Stillness comes slowly back to me, a practice I've forgotten for too long. Even in the long days I've spent pushing the world out to the perimeter, holed up in bed or cocooned with the kids here in the country, my mind hasn't been practicing stillness, my heart has been fluttering far too fast. My thoughts have been swimming, pumping, trying to keep up with the current.

How do you practice stillness among little ones, the antithesis of stillness? Their chatter, their busy little bodies, their minds that crave information and experience every day? There is a good chunk of it in the center of every day here in our home..."Quiet Hour", we call it - what used to be naptime (and still is, for the littlest two), an hour of silence, no reading, no singing, no art, nothing. Just lying in bed, thinking, staring, praying, or sleeping. Now to find more little bits of stillness in the rest of our day...havens from the busy that plagues modern family life, moments to lie at the bottom of the stream facing the sun, times to remember we don't have to breathe, we don't have to swim with the current, we don't have to work so hard to live life to the fullest. The King James Bible says, "Be still and know that I am God." (Psalm 46:10a) In the NASB, it's translated, "Cease striving..."

Busy is what saves us from our own minds when we're trying to drown out pain. In the stillness, you have to sift through all the voices and wait for them to be quiet so you can lie there on the bottom in peace, just you and what is important, lying on your backs in the sunlight. My challenge for myself, today: no music, no movies, no crowding of thoughts. Just stillness, and some works for the hands. See what flows out of quietness and peace. What do I see and hear when I lay at the bottom and stare at the sun, without trying to work so hard to keep up, keep on, and keep breathing?

Because the key to not staying in the valley, where it is dark and dreary? It's that I am always looking up, and there, in the sky and on the mountain peaks high above, the sun is always shining. When I'm on my back at the bottom of the stream, no matter how dark it is there, I am looking at the sunshine, and picturing what it's going to be like when I get to soar again.

Down to the bone

On a hunt for beauty, you find just what you need to face whatever is in front of you for this day: lament if you are mourning, joy if you are celebrating; work if you have the strength for it; rest if you are weary. Beauty is like a gemstone, cut with many facets, and as you turn it in the sunlight, it reflects all of life on it's different surfaces, the good, the bad, the ugly. I play a song one day, and it is the deepest longing of my heart I hear, and it is good to be known and to hear that I am not alone on this path. The next, the burden lifted, I hear the song of my salvation, and I am glad someone dances with me.

Today I watch the farmer making hay bales, his coif of white hair blowing in the hot furnace of the summer wind, chaff whipped up by his tractor and blowing over my feet on the sun-drenched porch. He is dripping sweat and smiling, hard at work. The kids are gone to Grandma's all week, free from the little cloud of cancer we were stuck under, swimming every day and calling me exhausted and happy and brown as berries in the evening. Aaron and I, my mother, my aunts, we work, work, work to bring some organization and simplicity to this house that has been too long without a good spring cleaning. Clutter makes for difficult work and I am ready to be free of it. We haul out bag after bag of trash and donations for the local thrift store, and slowly the bones of the farmhouse emerge like the first time a girl wears a swimsuit in springtime.

The last two nights, I watched feel good movies. I'm reading an uplifting book for the first time in months. I'm reading the book of Esther and Ruth in the Bible, because I need some happy endings. To remind me to bask in this happy ending. To remind me it is okay to smile, long and wide, for this happy ending. To drink lots of iced tea and spend lots of time sitting in my swing in the summer evening sun, to bring the kids to the pool 8 extra times this summer and sign Rosy up for gymnastics and do messy crafts and work so hard my bones ache to organize and deep clean my house. We are free! He has delivered us!
Now you have every spiritual gift you need as you eagerly wait for the return of our Lord Jesus Christ. He will keep you strong right up to the end, and he will keep you free from all blame on the great day when our Lord Jesus Christ returns. God will surely do this for you, for he always does just what he says, and he is the one who invited you into this wonderful friendship with his Son, Jesus Christ our Lord. (I Corinthians 7:7-9)