Extraordinary

Somewhere along the line I decided I was invincible. Oh, I admitted I would someday die, but until then...invincible. It was right around the time I had to face up to the fact that I would someday die. Around age 19. I felt the tautness of youth in my muscles, the energy propelled on by the drugs that kept my heart beating, the refusal to sleep for fear of wasting precious time. I remember wearing a shirt that bore the motto, "You can sleep when you're dead." And I truly believed it. Rest was for the weary, sleep was for the weak, reflection for the elderly.

One day, once a year, I resurrect that spirit from the ashes. I rise early, pull on my oldest clothes, forgo my shower, and head outdoors, whatever the weather. My body coils and springs again as I chop wood. I lay down in the dirt, and light fires, and breathe smoke. Maple syruping time is the one time I relive this youthful pipe dream of invincibility. I hope I never see the day when I have to lay aside my ax and give it up forever.

That spirit of invincibility carried me through a dark, dark day when my heart actually stopped. When I try to think back to that day and figure out why I acted in certain ways, it still makes no sense to me at all. I collapsed in a hallway at work - thankfully, work was a hospital - and came to during my third shock as defibrillator pads sent an arc of electricity through my chest. I don't remember collapsing, although I do remember having an odd sense of impending doom while finishing my shift, which caused me to check on my patient about 100 extra times before I completed my work. When I came to, I made a miraculous recovery, and refused to even allow the doctor to call my parents. That streak was there from the start of my health problems, and, to this day, I don't understand what about heart disease made me push my parents away as a young person. I wonder sometimes if it was a sense of frantic lack of control, the idea that I would never be an independent, healthy adult? I wonder if I tried to protect them? Whatever the reason, it was a nearly uncontrollable, animal urge, and reduced me to an automaton at times. Like when I told the doctor I would not give him their phone number the day my heart stopped. I regret it, sometimes. On the hand, I lived through it.

And kept on my invincible course. If my heart stopping didn't kill me, what would? I wasn't a particular risk taker, although I enjoyed crazy hobbies like snowboarding and whitewater kayaking, and did weird, random acts of insanity like jumping from a perfectly good bridge into a shallow river and skydiving from a perfectly good plane. Oddly, cancer hasn't inspired a second surge of "Bucket list" type activities - instead, I am cataloging the simple pleasures and stocking up on hundreds of hugs from my kids and fabulous evenings with my husband.

Somewhere around the time of my radioactive iodine treatment, I began to feel vincible. Death, of which I had always been aware, didn't seem that much more real; but weakness did. I began to feel the life blood course a little slower, I felt the tautness melt out of my muscles as I gained extra pounds of flesh fed by stress, sorrow, and a drastically slowed metabolism.

This week, I had just one glimmer of the old self: in the chopping of the wood, the starting of two fires, the brave cooking outdoors on a windy, bone-dry spring day. The chatter of children floating on the wings of the wind, and moms reveling in the smoky morning tradition. For tradition it has become now, after 5 years: a sausage and pancake breakfast cooked over an open fire; the steam off the sap scenting the air; the walk up into the sugar stand to touch the skin of the maples and taste the drips of icy sap flowing down metal taps. I emerged from a week of extraordinary weakness to feel extraordinarily invincible once again.

Now I realize it is just another gift from God. Although I do fuel the fire of the energy myself, clawing down deep to find a hidden reservoir, He fans the flame. He gives the sun, and the unseasonable warmth, and the friends to help chop the logs and load them onto the fires. Some trust in chariots and some in horses, but we trust in the name of the Lord our God.They are brought to their knees and fall, but we rise up and stand firm. (Ps. 20:7-8)

I am invincible. This week especially, I am reminded that my Lord destroyed death. There is absolutely nothing that can destroy me...because I am covered with His righteousness. (Isaiah 61:10) His extraordinary strength has been completely revealed to me in my extraordinary weakness. Two days ago, I chopped wood like I was 20 again. Today, I am laid up with a chest cold-bordering-on-pneumonia due to my lowered immunity, and yet can hardly sleep because of the cancer suppression drugs that are currently wreaking havoc with all body systems. I take nothing for granted but this: Christ died, Christ is risen, Christ reigns!

My burning bush

Blessed is the man

who walks not in the counsel of the ungodly,

nor stands in the path of sinners,

nor sits in the seat of the scornful;

but his delight is in the law of the Lord,

and in His law he meditates day and night.

He shall be like a tree

planted by the rivers of water,

hat brings forth its fruit in its season,

whose leaf also shall not wither;

and whatever he does shall prosper.

~ Psalm 1 ~

Across the road, down the valley, where the trees grow tall next the little silver thread of Big Elk Creek, there is one lone birch that shimmers every evening in the sunset. Through March and April, this tree of diamonds delights my soul every day as I go through the hard work of keeping children content and cooking dinner, all at the same time. It is by far the most difficult hour of the day for me as a young mother. Yet, in these muddy months where there is little of beauty or refreshment on the spring horizon, God has lit up one tree like a jewel to bring me joy.

He says that His mercies never fail. By His mercy, we are not consumed. (Lamentations 3:22) To the ancient Jews, this probably meant something wholly different than it does to me today: then, it meant deliverance from armed enemies, food provided to the family table during a drought, safe passage to new grazing grounds. Because I have food on my table, a fully-equipped medical world at my disposal, a large house in which to live, no enemies at my doorstep...many would argue that I am no danger of being consumed by anything. But every day that danger lurks...through the difficult dinner hour, when I would much rather blunt my children's senses with a movie instead of conversing with them in their tired and hungry state. Depression, complacence, despair, irritation, over-scheduling, drifting through life, lowering my expectations. Those are the enemies that threaten to consume me as a 21st century Christian housewife and mother.

Many years have passed since those summer days

Among the fields of barley

See the children run as the sun goes down

Among the fields of gold

You'll remember me when the west wind moves

Upon the fields of barley

You can tell the sun in his jealous sky

That we walked in fields of gold

~ Fields of Gold, Sting ~

The whole field of corn husks in front of my birch tree sparkle as if you dropped nuggets of gold there. Just husks. Lit by sun. Somehow strangely beautiful. This is one of those visions of glory in our everyday world vista that plucks the heartstrings, and they vibrate to a bittersweet melody of joy that is so sweet it aches. Somehow this vision condenses for me all that has happened in my life:

friendships ruined,

heart failing, somehow healing,

hugging children who were dying,

feeling their last months soak into my soul like honey;

marrying my best friend,

birthing babies,

that painful, joyful metamorphosis of body and soul;

cancer, the cutting of surgery,

the years of living with it's specter;

baby girl slipping away,

baby girl coming home,

baby girl forever different;

another spring.

A glittering field.

A thousand sorrows;

a million joys.

Through it all, serving a Savior who takes my husks and turns them into glittering gold. A God who takes the last bit of my strength, energy, willingness, and infuses me with this sudden, thundering thing of beauty that lights up my kitchen night after night. The God who speaks through a burning bush, and tells me He is still there...and no, He is never silent.

Niche

In our new reality of grand mal seizures and aggression brought on by seizure meds, we spend time trying to navigate, normalize, negotiate the newness. It is frustrating, to say the least, that sometimes the very precious child who is ill and demands attention gets lost in the shuffle of all the paperwork, processing, and preparing that is done because of her illness. In the midst of chaos last week, I carved out a "low stimulus niche" for Amelia - and her overwhelmed sisters.

Give me a place to call my own,

Family & friends to make it a home.

(unknown)

It is in these little things - the faithfulness and commitment necessary to sew a beanbag, carve out a space, make it special and treasured - that motherhood comes into full bloom. It is in the prioritizing...seeing a small task that can and must be completed, and pushing other larger tasks that forever loom in the background in to the background...that mother love can be funneled and felt by the little souls in my care. I am reminded of the places where Christ is a "mother" figure to us in addition to Father - the glimpses we women have into the source of those parts of our nature that may be confusing, may be thwarted or undervalued by our culture, but are most certainly valid and God-given. God is a compassionate, nurturing being just as He is an exorting, teaching Father.

As a mother comforts her child, so will I comfort you; and you will be comforted over Jerusalem. (Isaiah 66:13)

...How often I have longed to gather your children together, as a hen gathers her chicks under her wings, but you were not willing. (Matthew 23:37)

How excellent is thy lovingkindness, O God! therefore the children of men put their trust under the shadow of thy wings. (Psalm 36:7)

No longer an orphan

We spent the afternoon celebrating with our dear friends, welcoming Tessa to her new life, new love, new world. She came home from Ethiopia a few months ago to a home I can only describe as a home of deep faith undergoing deep pain. Her mother is one of those who is "mother" to every child she meets in life, from the kids on the block to the kids in the church nursery. For her, this is a crazy time of cancer and adoptive motherhood all swirled together in one bittersweet stage of struggle and strength. It has been a joy to see her inner beauty unfolding before my eyes, and today was a celebration of that. So, welcome to Tessa - to our hearts, our homes, our family. And a bow of gratitude to my friend, who has taught me a quiet, unwavering acceptance of God's will and God's timing that only a real-life example could teach. This bringing of the adoption dream to fruition has our whole church excited for our own journey to unfold.

"Whoever receives one child like this in My name receives Me;

and whoever receives Me does not receive Me, but Him who sent Me."

~ Mark 9:37 ~

A day of chaos

One year and four months ago, the duct-taped wonder also known as the "Ghetto Dryer" slowly died. A $50 miracle - the matching dryer to our splurge of a front-loading washer - replaced it. The dryer struggles shone a light on some spiritual unrest deep within, and I wrote about it in detail back in December, 2008. Tonight, the miracle dryer started on fire. Somehow or other, a metal headband got thrown in with the wash, plugged itself in to the circuitry at the rear of the dryer, and electricity and smoke billowed forth. The fix was simple - the flames hadn't actually burst out yet, and opening the dryer door stopped the flow of electricity. However, the heating element seems to have taken the brunt of the damage, so the dryer is probably kaput. Aaron and I ran around locating the fire extinguisher, cleaning out the laundry closet at midnight. Quite a scene! Beyond the dryer itself and the blackened headband, there was little damage.

It was a fitting end to an equally chaotic day. Amelia had two seizures today that were the blatant, twitchy, nasty type we have been thanking God she doesn't have. I am beginning to settle into the new normal...the life in which whatever you least expect will always happen, the life in which whatever you fear will probably come to pass. I wouldn't call it resignation exactly, just a kind of resolute and dogged expectation. The seizures lasted about 2 minutes, and were full-blown enough that any denial I have been entertaining about the reality of epilepsy was completely swept away. The post-seizure (post-ictal) phase was also significantly more "classic": overwhelming lethargy, drowsiness, decreased ability to respond to commands or questions, dilated pupils, poor muscle tone. A few phone calls with the team at Mayo brings relief on one hand, and sorrow on the other: the video EEG monitoring in mid April has been cancelled, as it is unnecessary given the new circumstances; and Amelia was started on an anti-convulsant medication today, Keppra.

My primal reaction to the first seizure was horror. The nice thing about being a nurse is that, when confronted with any health crisis, the very first thing that happens inside of me is the nurse "switch" gets flipped. I immediately run down the checklist: Airway, Breathing, Circulation. It isn't until later that emotions creep back in. At first, I felt relief - this seizure was so undeniable, I am no longer faced with uncertainty about whether the side effects of seizure medication outweighs the benefit. I know now that Amelia needs this treatment. Yet I am stricken with the thought of watching my dear one grow up with a disabling condition, a condition that will probably limit learning to some degree, will certainly embarrass her and cause emotional angst, may limit career choices, educational endeavors, or social opportunities. Yet I also know that, finally - in my 30's - I can finally see the health problems of my youth as the gift they were. I would not be the tenacious fighter, the compassionate nurse, or the impulsive, fun-loving mother I am now if it hadn't been for heart failure at 18 and cancer at 29. Today I heard a man dying of cancer say, "God cannot give me a bad gift." God has not given Amelia a bad gift - nor has He given a bad gift to me as her mother. I need to get my teeth into that lesson in the next few days. All over again, in a new way. The prism of God's character is thrust once again before my wandering eyes, and I am brought back to my knees in praise. God is God; God is good; God is great.

God is great & God is good

If God heals me, God is God and God is good.

If God chooses not to heal me, and to let me die,

God is still God and God is still good.

~ Zac Smith, church worker, missionary, father of 3 ~

But of that day and hour knoweth no man, no,

not the angels of heaven, but my Father only.

Matthew 24:36

Tethered

Tether. Rope. Just a tool. Infinitely less treasured and considered than whatever precious cargo it anchors. It's frayed ends continue to go unnoticed unless they split far enough to break, let loose the treasure.

I never gave a thought to the thousands of tethers God formed inside me while I still slept inside my mother's womb. My frame was not hidden when You formed me in the secret place. One day in 2008, just after the birth of my son, a cascade of events started. Aaron and I pored over medical journals and came to the conclusion that we should at least try to be done having children. Sever the tether between ovaries and uterus. It was an odd decision to make, in the day of vasectomies. But that is what the two of us had peace with. So I went under surgeon's knife and closed a chapter in my mind, for my body.

In the twisted, burned ends of that tether was hope when cancer was named just one short month after the surgery. My cancer feeds on pregnancy hormones, and that surgery was a sigh of relief for both of us - at least that was taken care of already. Yet in that "secret place" more pain was planned: the very risk we prayed so steadfastly to push away came to be. The next baby my body fed and loved grew in a poor home, a small tube that was already scarred and severed, where life couldn't be brought to fruition.

That tether I once thought so little about now causes daily pain. In the tears I cry as milk comes in for a baby who will never be born, there is searing loss. In the ache deep in my belly where an ovary protests over it's now unwelcome home, there is burning and regret daily. It is one thing to believe in God's perfect design, and another to believe in His perfect plan. Where is His glory in undrunk milk, where is the servitude in the burnt offering of physical pain?

This decision - the cutting of my tethers, burning of the tubes that once carried babies to womb - has been fraught with regrets, uncertainty, bewilderment. It once felt so right, so God-given, the decision to stop having babies. In hindsight, the plan seems much less perfect. Where does cancer and death and longing fit with His plan?

There are a million answers in the sacred Book to this question. As the days pass, the trials pile on, and the pain grips, I am forced to see the one underlying theme to every answer He gives me: Grace. My grace is made perfect in your cancer, in your pain, in your loss. (II Corinthians 12:9) The Greek word for "grace" is used 155 times in the New Testament. He gives abundant grace - manifold, multi-faceted, multi-colored grace. (Ephesians 1 & 2, I Peter 4:10) Whatever the struggle, His grace is bigger. Whatever the pain, His grace can turn it to rejoicing. Whatever the loss, He will transform it to gain. I live constrained to the here and now, this fleeting moment that will be gone and forgotten in the blink of an eye: He exists in eternity, and sees it all, the rainbow of joy and blessing that is this anguished, wrung-out, failing, glorifying, succeeding, believing life I walk.

God uses suffering to display His grace. And what a benediction this is...what a benediction. God answered not by removing the pain, not by removing the trouble, but by increasing the grace which then increases our confidence in our salvation and in the presence of God and the goodness of God. It is these kinds of tests when we experience enduring grace that produce assurance. He gave relief - but relief not by removing the problem, but by pouring on the grace. It's amazing when someone has been told they have a terminal illness, or a loved one has a terminal illness. One who walks with the Lord finds a flood of grace, the likes of which they've never experienced before. As believers near the end of their life, an illness, you watch God just expand the grace until there's a certain joy and anticipation that overwhelms all the sense of loss. God wants to display His grace. He has a right to display His grace. He finds His glory in His grace. ~ John MacArthur's sermon, God's Purpose in Our Pain, transcript available here and well worth the read

Of all the tethers that have been cut, underestimated, disregarded, the thread that binds my soul to my body and spirit and it's desires is the one that needs attention. In the moments that come, the collective moments that will eventually sum up my life when it is done, I need to tear away at that tether until I am afloat on the ocean of Grace instead of banging against the boat of self. I waste so much time pondering purpose, while my body buffets against the boat. I need to close my eyes, grab the threads of that tether and cut loose...forgetting worry about how I will stay afloat on the sea He walked upon.

Echo in a dark valley

There is no end to this story

No final tragedy or glory

Love came here and never left

Now that my heart is open

It can't be closed or broken

Love came here and never left

Now I'll have to live with loving you forever

There's nothing here to throw away

I came to you in the light of day

and Love came here and never left

Christ-ones see echoes of Christ in the ashes everywhere. This song by the dark, beautiful, belated Lhasa de Sela would be my song to my Savior. She speaks elsewhere of le Diable j'ai choisi le plus (the Devil I have chosen, "La Confession") and Je n'ai pas peur de dire que tu me fais peur avec ton espoir et ton grand sens de l'honneur ("I am not afraid to tell you that you scare me with your Hope and your huge sense of honor").

Road trips to and from Rochester provided lots of time to listen to music - and lots of time to ponder what to listen to when children listen along. I grew up on a steady diet of jazz, classical, and sacred hymns, and infused that mix myself with everything secular I could get my hands on by middle school. Believe it or not, Christian music was worse in the 1990's than it is now. There are few musicians - even today - who play contemplative, jazz-infused music, with the possible (and notable) exception of J.J. Heller, who is overplayed because of her unique offering. Her music is similar to the strangely laissez faire but sunshine-infused Indie soundtrack of Juno. A young pastor reflects on the plethora of poor quality Christian music releases and ultimately quotes Madeleine L'Engle:

If it's bad art, it's bad religion, no matter how pious the subject.

Ultimately, God assures us that, if Christians are silent and void of praise, even the rocks will cry out! Is it too difficult to draw connections, then, between the lyrics of secular artists and the great Truth of the universe? So, what makes the mix at our home? There is a lot of the blues, a lot of jazz, some country, even some metal and rap. Who knew that Bible verses are paraphrased by Linkin Park ("I will never be anything 'til I break away from me"), Pearl Jam works faith out on their knees, and former-rebel Sinead O'Connor is now putting Psalms to melody?

Where do you hear the echoes of God's Word? What blasphemy do you deny access to your home, the ears of your children? Do you have a favorite radio station or music mix? Those who listen to secular music may appreciate the Glimpses of God column from Christianity Today as a place to start discovering hidden sheaves of wheat among the tares of the music scene.

Transformations

I am often moved by the artwork of Ria, a two-time, two-type cancer survivor whose catharsis is found in brush, pen, film. Her self-portraits are beautiful. I was inspired to try a series of self-portraits myself. Someday, I will frame this series for my daughters when they embark on their own either physically or spiritually - whichever comes first.

METAMORPHOSIS IN THREE CHAPTERS

1. HEART

God took me to the brink of the grave as a teenager, but I bowed my head low and set my brow in confusion and disgust. Life seemed colorful for a while, full of the color I myself created: red for fury, orange for vibrance of human spirit, white for void, black for depression. This self-portrait includes a lot of ugliness, craters where selfishness scarred my soul.

2. MOTHER

It was the birth of my second child that tilted my head back to the heavens as I searched for answers and found nothing within myself that was holy, pure, blameless, or particularly beautiful. This transformation turned me outward, and desaturated my vision: black for self and white for Christ. The ugliness is pushed to the borders of this face, as I began to see myself washed clean by Christ's blood.

3. CANCER

Balance and moderation began to speak deep in my soul when cancer came and stayed. The colors are beginning to creep back into my days since cancer highlighted beauty once again. It brought me to a place where I can both praise God's holiness and see my own beauty and transformation as a new creature in Christ. I can bare more of my soul to the world around me, seen here as shoulders and neck emerge from the pinhole view of the first portrait to the broader spectrum of this one.

...the final removal and transformation of all that can be shaken in order that what cannot be shaken may remain and continue. Let us therefore, receiving a kingdom that is firm and stable and cannot be shaken, offer to God pleasing service and acceptable worship, with modesty and pious care and godly fear and awe; For our God is indeed a consuming fire. (Hebrews 12:27-29 Amplified)

5 years & 12 days ago

She - babe I was certain was boy - was born after 5 days of off-again/on-again labor. 4:21 p.m. The only child with a civil birth hour (the rest kept me up for at least one night of laboring).

Her little rosebud mouth and dainty features were a shock, and both Aaron and I knew immediately - before it was announced - we had another girl. She is named after two sweet ladies we've long loved - Auntie Rosalie and Grandma Nel.

We carved a birthday out in between hospital trips, trying, as families under duress do, to make her feel significant and celebrated in a season where only survival is being considered daily.

A thousand failures have come with the demands of parenting such an ill child. God was good to have us home for Rosy's birthday. I pray I find better ways to love all of them as I try my best to care best for the one who cannot care well for herself. But if any provide not for his own, and specially for those of his own house, he hath denied the faith, and is worse than an infidel. (I Timothy 5:8)

Humbled, tested, blessed

Life is hard and life is good. "That he might humble you and test you, to do you good in the end" (Deuteronomy 8:16). ~ John Piper's tweet today at 1:30 p.m.

That morning, we watched two friends hands run the length of a tiny casket, draped in a blue knit baby blanket, that final touch symbolic of the life and death the casket held: short and sweet. It's the second time we've watched them walk this road of sorrow, the second baby they lost the same day they met him. Two sons - Josh and Jake - arrows now around God's table in heaven instead of around theirs here on earth.

We passed through their darkness on the way to our own. A side trip on the way to Mayo to find out what was wrong with Amelia. The pale turquoise of the spring sunlit sky belied the shadow of the valley we felt deep inside. Yet walking a road of suffering nearly unbroken for two years has taught us that you still feel the sun on your shoulders when your heart is breaking. It feels paler, somehow, less vibrant. But you still see the beauty in the day. Sometimes I can feel the wrinkles forming deeper around my eyes, as if time has switched to fast forward and wisdom and age are overtaking me by leaps and bounds.

We froze the frames of the day for a few hours at a favorite park, Minnehaha Falls. I could almost feel the lift of the swing chains as I looked up at the children from the ground. Remember when you were light enough that the chains curved as your weight pulled the swing up just to the point of the pendulum where you became weightless? I remember that - the curving of the swing chains, and the sudden snap of them as my weight pulled straight down to earth inevitably. It is a picture of the state of the soul of suffering: brief moments when you are weightless and the grin goes from one ear to the other; and the sudden snap and flying heaviness as the weight of trouble and despair pulls you straight back down into the dark curve of the arc.

We all gripped tight to the chains that carried our hearts to joyous freedom that day, flitting back and forth from sorrow and darkness to light. We watched Amelia closely and I thought deep about how many of these moments have been lost to cancer, encephalitis, fear and forboding. Much of that fear stems from the fact that I am not yet ready. (Does anyone ever feel ready?) I feel like I have my claws into the lessons of life God has placed before me, but the book is still in the shadows and I haven't read it yet. There is a hint of desperation to the grip I have on these truths He places before me. Suffering, especially, I have not understood yet. I see hints of the why every so often. But the gestalt of the picture still escapes me.

As Philippians 2 says so eloquently in the King James,

Wherefore, my beloved, as ye have always obeyed, work out your own salvation with fear and trembling. For it is God which worketh in you both to will and to do of his good pleasure. Do all things without murmurings and disputings: That ye may be blameless and harmless, the sons of God, without rebuke, in the midst of a crooked and perverse nation, among whom ye shine as lights in the world;

It is the essence of the lessons I am in the midst of right now: I am Beloved. I must Obey. Work out salvation with fear and trembling. God works in you. For His purpose and pleasure. Don't murmur or dispute. Your goal is to be blameless, harmless, identifiable as a daughter of God, without rebuke, shining as a light. It is in these days of walking with God in faith when all that is in me screams for a better answer that I work out - understanding, becoming reverent, learning tenacious, trusting, defending faith - my salvation. I come to grips with what happened to me, the new creation I became, the day I believed. I decide, over and over and over again, to live this life to which I am called.

Even with cancer. Even with life-threatening infection that appears out of nowhere and threatens to swallow up the one thing I still call beloved and cannot loosen my grip on: my family. Even when it is epilepsy. Even when all of life changes in an instant. Even then...He is good. He is holy. He knows. He loves. He lavishes. He sustains. He is never gone. He never quits caring. He never quits drawing me closer. On this the solid Rock I stand...all other ground is sinking sand.

The good news, the bad news

I always start with the good news. Always. Today we received news that the flattening of Amelia's optic nerves (a sign of damage) is gone since the latest spinal tap. Her optic nerves also look very healthy on the MRI brain scan, and the channels that drain fluid around the brain stem are completely open. They had previously been partially blocked by her swollen brain stem. Her MRI is, in fact, completely and totally normal for the first time since October. It appears that she suffered two distinct demyelinating events, one in October, and another in November. This does not yet meet the criteria for multiple sclerosis, so, at least for the time being, that has been eliminated as a potential diagnosis.

Her spinal tap did indeed reveal high pressure in her spinal column. As yet we have absolutely no explanation as to why that is persisting. Pseudotumor cerebri was ruled out as a potential cause because of how healthy her optic nerves currently look. She certainly does not need a shunt to drain the fluid off her brain, as the most severe symptom of increased pressure she is showing at this point is severe headaches.

Now for the bad news. First, we don't have all the results back on the blood tests and the spinal fluid cultures. So various genetic diseases and an ongoing, chronic infection are still possibilities. As I held Amelia through her EEG yesterday, I prayed that seizures would be blatantly obvious in her brain waves if that is what she is suffering. Unfortunately, I got the answer to my prayer. Amelia is showing "spike" seizure activity in the central part of her brain. This means she isn't having the grand mal seizures, which cause generalized twitching, loss of consciousness, and sometimes loss of bladder/bowel control. That is a "classic" seizure. She is suffering atypical, or focal/partial seizures that involve only one part of her brain - the part that controls balance, speech, eye movements, and is the pathway for higher order brain function like contemplation, behavior control, abstract reasoning.

She had 10-12 episodes in the hour and 15 minutes she was observed. This was supposed to be a baseline study, and wasn't expected to reveal any seizure activity at all. The doctor was surprised - and pleased! - to have so quickly and easily found an answer to what is going wrong with Amelia's health right now. To tell the truth, my shoulders feel much lighter this evening. The official, working diagnosis is epilepsy, a type of partial epilepsy that develops after the covering of the brain is irritated by infection or inflammation. The theory is that Amelia had a severe viral encephalitis in mid-October, followed by a major demyelinating event (ADEM) in late October, and a second demyelinating event in mid-November. All of that caused her to develop partial seizure activity, which will probably last anywhere from 2 years to a lifetime as a result of the damage to that part of her brain.

The symptoms of Amy's seizures are very mild. They start with irritability and inability to function or cope, followed by changes in balance and leg coordination, twitching in the eyes or crossing of the eyes, and finally nausea and vomiting. She has had 9 episodes so far that have developed into a full-blown seizure event that involves her laying, rocking her head from side to side and grunting rhythmically, during which I am totally unable to arouse a response.

The plan is that we will hospitalize Amy in the end of March or beginning of April for 72 hours of video EEG monitoring, which should give the doctor much more seizure activity to observe and influence his treatment decision. He did suggest beginning treatment immediately, but Aaron and I both feel the treatment has side effects severe enough that we would like more diagnostic testing first. We have to balance the need to confirm the diagnosis with the knowledge that prolonging treatment could also prolong healing time.

Thank you for your prayers. At this time, the hospital stay is the only other diagnostic test planned. The doctor stated he is between 95 and 99% sure that he has a definite diagnosis of epilepsy. While it is hard to think of our daughter having a chronic, potentially debilitating disease that will require daily medication, it is such a relief to know what is wrong, and that it is probably not life threatening at this moment. It was also such a relief to both Aaron and I to have a doctor find a specific cause - we are no longer the overly paranoid parents running from one doctor to the next. We were right, there is definitely something wrong. I feel as though we have finally found someone able and willing to help sweet Amelia regain her normal function and start progressing forward again instead of regressing.