Undone

Venus on the horizon at sunset

Let your boat of life be light, packed only with what you need - a homely home and simple pleasures, one or two friends worth the name, someone to love and someone to love you, a cat, a dog, a pipe or two, enough to eat and enough to wear, and a little more than enough to drink, for thirst is a dangerous thing. (Jerome Klapka Jerome)

I have a nightmare, excruciating. I am with my husband and two of my children, the eldest and the youngest. We take a sightseeing ride over St. Anthony Main, where the Mississippi burgeons for the first time into her full glory as a major river of the United States. The river is 300 feet below us, huge boulders slicing her flow into streams. Suddenly the car we are in tips haphazardly to the side, nearly spilling us to our death over the rocks. My husband grabs my son's ankle and my daughter grips the rope. Then we huddle together in the bottom of the car, shifting all our weight to the other side, trying to keep it upright. I beg my sleepy husband to hold tight to my son's ankle or I will go mad.

I wake up sweaty, and it is time to get up and get ready for work. I put on my scrubs, my PhD(c) lab coat, my stethoscope. I head back to the ICU to pick up a patient. I face the scorn in the eyes of the coworkers. I try to find the cath lab to drop this patient off for his procedure. I am squeezing the bag that connects to oxygen and the tube through which he breathes while comatose. I can't find the lab through the maze of construction in the hospital, and I am begging, "Lord, if this is a nightmare, please let me wake up." The stress mounts, and I am undone.

I come up another level, this time really to consciousness. At least, I think so. I am drenched, weary, fearful. What if this is just the third nightmare-within-a-nightmare? I have visions of the movie Inception. It is not until 30 minutes later, pulling on my yellow jacket and heading out the door to church, that I am sure I am really awake this time.

This is PTSD. The nightmares and flashbacks bring me continually to my knees, so that I pray even in my sleep. How can I deny that God is moving through the most painful season of my life, when all the traumas of past days come crashing down and I can finally hear the sound of the walls in my heart moaning under the pressure of new stress, collapsing and clouding my mind with their dust and grit.

In Deuteronomy 31, God sings through Moses' mouth these words to Israel:

I would have said, "I will cut them to pieces. I will wipe them from human memory," had I not feared provocation by the enemy, lest their adversaries misunderstand, lest they should say, "Our hand is triumphant, it was not the Lord who did all this." See now that I, even I, am He, and there is no god beside me: I kill and I make alive; I wound and I heal; and there is none that can deliver you out of My hand. For I lift up my hand to heaven and swear, "As I live forever, if I sharpen my flashing sword, and my hand takes hold on judgment, I will take vengeance on my adversaries and will repay those who hate me." Rejoice with me, O heavens, bow down to Him, all gods, for He avenges the blood of His children...and cleanses His people's land. (Deuteronomy 31: 26-27; 38-41; 43)

He wants me undone. He wants me struck open like an overripe melon, spilling my guts and hollowing out a place for Him. He wounds me so that He may bind me, so that I might see the awesome power of His hand in my life. While I am hurting, I sit in the palm of His hand, in His grip. When I am whole, it is He who makes me so. He empties out my life, so that I might simply live. He sweeps away distractions and leaves only that which matters most, so that I might notice the simple joy and the all-consuming love that surrounds, instead of all the cobwebs I've stored up in my spiritual house. It is as if the furniture has been removed, and standing in the echoing room are my husband and children, my family and friends, just people - nothing else. The sun streams in the windows and hits the whitewashed walls, and I am undone again, this time by the incredible beauty of His creation instead of the cardboard crowns I have constructed life long. I can say, this day, that I care nothing for appearances, abandoning them for the absolute, pure glory of God.

Glory to God, the beginning and the end, Who was, and is, and is to come. (Revelation 1:8)

The wound that blinds

It's one of those mornings when you just keep putting the kettle on. The hot water burbles out of the cracked teapot spout, and the bag steeps it's stems and pods, and you lift it until the brown liquid slows to a drip and drop the spent bag onto the saucer, a brown wet spot on a pile of orange dried ones, a whole pile of teabags to propel you through this morning. The cream swirls caramel through the comfort and you sigh as you lift it to your lips and try to focus deep on this one small pleasure amid a sea of pain and ugliness. Raw.

Nothing seems to come into focus these days. You blink and rub your eyes and you still see shadows and colored blur and there is no clear path and no sharpness to the images that race like sand through those windows of your soul, time in fast forward and you failing to catch any of it long enough to focus.

It's a hard thing to come to the bottom of another pit and find your brokenness and own it. Own that you can't mother these kids the way you wish you would. Own that your house falls into entropy every single day. Own that your husband cries sometimes, because of you. Own that you'd rather stay up late into the night just to get a breath of aloneness. Own your loneliness. Own the old scars and the wounds you thought healed that open their festering again, despite the washing of the Blood and the debridement of the years of scalding repentance. 

Did you really think if you reframed it again, you'd understand it? You've tried looking straight at it before, and it's just a bloody old wound that doesn't breathe purpose. Those wounds from your childhood, the times you beat your head against the road because the pain of the body was preferable to the pain of the soul?

You bite your lip again, and the blood runs, and you wash the new wounds with tea. Close your eyes and breathe one word. Thanks. And the beauty rushes back like the heavens opening up right on top of your head, and the weight lifts when you tilt back your head. You're not ready to talk to God today. But He still washes over you. No words. Just sensation, like the weight of a whole winter's growth of warmth against the winds Satan blows cold into your soul. The wind still blows. Sharp as a knife, and sometimes it gets through the armor that's grown over baby soul skin, shaggy ugly but safe. Somehow He wants the baby soul skin still soft and vulnerable. At least he puts the shaggy ugly over it. He doesn't leave you naked in the wind.

You tilt your ears back, too, to listen for the Word from the one you can't speak to today. Where were you when I was hurting? Why do you cloak purpose in sorrow like a seed in the snow, down deep where I can't see it, and ask me just believe it's there? 

The swayed back that's carried a thousand burdens still stands strong in this storm, too. Somehow.

And the face bruised and broken, bristled with cold, it's still velvet beauty, too. Somehow.

No matter how much you want to lie down and rest, you just keep pouring down the tea. The wheels keep turning in your brain and you are the silent thinker standing motionless while your body moves through the day. The kids whirl like painted tops and skitter through the mess of the hardwood floors, and the tea bags dry in the morning's pale winter sun, and the clocks tick, and it all registers slow. Bleeds through the winter weight of shaggy armor you've grown out from your soul in desperate anguish. Somewhere deep in the still brain dawns the realization that when you protect you don't just shut out Satan's cold wind. You shut out Truth and Beauty. Numbness is no way to live.

You pick up the book you threw across the bedroom floor last night and run your fingers over the rumpled tear tracks. In this present winter of the soul, alone in the warm yellow house with the phone silent on the hanger and the cell phone minutes piling up with unuse, for some reason the wounds open, and you know He wants you to scrub them out again. Alone with Him. Aching. Few friends to wrap like blankets around your cold shoulders. Just you, and that strange warmth, and that sharp evil wind. Alone down here at the bottom of this old pit you've left lay there so long you don't recognize the walls of it. 

The numbness recedes and the pain is hot and white again. As you throw off that fur coat and close your eyes to your nakedness, you realize it's not cold in here. You're in a warmth you never could have made with your shells and your coats, your wool and your shrugged tight shoulders and the hugging yourself against that old cold wind. It stirs like an ancient memory, that once long ago people walked around like this, naked. Didn't care. Were beautiful, image bearers walking close to the Image. 

You drop the bruised old sore into the hot Living Water and the pain at first is blinding. But as you stay there, under that Water, soak in that Water, let the Words wash over the old wounds, it recedes. And you reach down to touch the fresh white flesh washed white as snow and the fear recedes, too. The numbness leaches out. And you tilt your head back again and breath that one word, the only one you can squeeze out of your tired soul today. Thanks.

You're gonna cry yourself to sleep.

You're gonna soak the pillow for many weeks.

You're gonna cry...Why? Why me?

But in spite of the ache that doesn't go away

You'll be sharing your story one rainy day

and at the next table somebody catches your words.

He hears a truth he's never heard.

He takes it back to the marriage he'd given up on.

Hands it down to his daughter, who writes it in a song.

You didn't know.

A thousand things are happening in this one thing

Like a thousand fields nourished by a single drop of rain

So honey, wrap yourself in promise while you wait for the morning light

A thousand things are happening tonight.

You're gonna cry yourself to sleep.

'Cause for the moment all that you can see is what is lost, lost

Why me?

But in the midst of the most exquisite pain

You're drawn into a peace that you cannot explain.

And the praises you sing of a sovereign God

reach the girl whose last hope is gone

She never thought there was purpose in anything here.

Now the seed has been planted and it's taking root

You didn't know.

You're gonna cry yourself to sleep.

A thousand miracles you'll have to wait to see.

~A Thousand Things, Christa Wells~

Down comes the mallet

I grieve for you, Jonathan my brother;

you were very dear to me.

Your love for me was wonderful...

II Samuel 1:27

No one can heal the hurts and brokenness of life like Jesus can. Pointing out the superficial layers only intensify the alienation and lack of love that is causing the problem in the first place. Grace gets to the root rather than excusing and ignoring the behavior. It’s a tough job being a part of a community that is tied together by love rather than by performance and appearance. Grace always comes at the cost of self-preservation. Live creatively, friends. If someone falls into sin, forgivingly restore him, saving your critical comments for yourself. You might be needing forgiveness before the day’s out. Stoop down and reach out to those who are oppressed. Share their burdens, and so complete Christ’s law. If you think you are too good for that, you are badly deceived. (Galatians 6:1-3) from Grace Is For Sinners by Serena Woods

I love how God's lessons for me fit the seasons. Cancer treatment in the bitter cold and desolation of November. A hot summer full of frazzled brain waves and the storms of seizures for my sweet baby girl. Now a December laden with the silence of snow is full of silence...a phone that's stopped ringing, an empty e-mail in-box and a shrinking list of friends on Facebook along with a shorter than usual stack of Christmas cards. I am on the bitter end of the Christian community and it is eye-opening. I have been here before. It makes me cry out for mercy and beg God for justice and for grace. Revelations 22:20 is wrung from my heart strings and my trembling lips as I hide my breaking heart from my kids in the shower: Come, Lord Jesus, come! 

I learn afresh that the more we are alone in this world, the more we are cast on the God who longs for our friendship...finding new sweetness and fullness in the silent conversations of the heart, the quiet of the days, the stillness that is a home with four walls and your own children. He settles the barren woman in her home as a happy mother of children (Psalm 113:9). I vacillate between peaceful joy in this quietest of Christmas seasons, and heartache and brokenness as I am cast daily onto the Rock. A heart that is beaten is tender though - like the mallet to the steak, every blow breaks down the threads of these heartstrings, and Jesus binds them up in a soft soul beating quietly in His presence once all the tears have been spilled.

Aftermath in the night

Blessed be Your name

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

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

~ Blessed Be Your Name

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

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

My soul is in anguish.

How long, O LORD, how long?

Turn, O LORD, and deliver Caleb;

save Caleb because of your unfailing love.

(Psalm 6:3-4)

Hold my heart

Aaron up and walking after his morning pain medication.

Caleb resting in the room across the hall from Aaron.

Sick, sweet little boy.

Caleb was hospitalized tonight across the hall from Aaron's room. He has pancreatitis, and one of his lab tests is actually 800 times higher than it is supposed to be. Somehow, the outlet of his pancreas has become blocked because of the swelling in his intestines, and the build-up of lipase and amylase (two of the enzymes the pancreas produces) is eating away at the pancreas now. The pancreas is important because it aids in digestion and it also produces insulin. Therefore, the ER doctor feels this infection is life-threatening to Caleb. The mortality rate of childhood pancreatitis is 10-90%. Please pray that it will heal, and that the doctors would know how to treat him. He also has a low blood count from the bleeding in his abdomen, low sodium in his blood, which indicates his level of dehydration, and his heart rate and respiratory rate are elevated, which tells us his whole body is very stressed out.

I don't really have words to express how I feel right now. Tonight, I went to see my friend's obituary and saw it was on the same page as my grandfather's. I sit in a hospital room with the two most important men in my life sick and not getting any better yet. I guess I contemplate what it would be like without them, just for brief moments it kind of hits me that I could lose them. When reality breaks into and destroys my sense of reality - i.e. I come to terms with the fact that the gift of their life is not now nor ever has been certain or permanent - the whole world seems to implode...sounds come caving in, my vision changes, I feel like I am losing touch with what I know. The slow stripping away of pride and control and self-assurance is gut-wrenching, agonizing.

Yet in the midst of the darkness come flashes of joy, beauty, light. God sent two small gifts to me today that were extravagant and unexpected. Truly, He cares for me - from the big needs like the health of my loved ones and grieving my grandfather, to the little ones like what to feed my family for supper. The gifts today were two cardinals, sitting in the middle of the road at two different times during the day. Cardinals are kind of my grandfather's "symbol". I felt like I had my grandfather flying along beside the car in the shape of a beautiful red bird. God was telling me His love is strong, and He knows what I need.

He is still there, listening, loving, lavishing. Even when the whole world stops spinning, even when you wake up to your nightmare, and wonder where the bubble you used to live in has gone.

Heavenly Father

You always amaze me

Let your kingdom come

In my world and in my life

You give me the food I need

To live through the day

I look out the window

The birds are composing

Not a note is out of tune

Or out of place

So why do I worry?

Why do I freak out?

God knows what I need

You know what I need

Your love is

Your love is

Your love is strong

Two things you told me

That you are strong

And you love me

~Jon Foreman, Your Love is Strong

One tear in the dropping rain,

One voice in the sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One light, that's all I am

Right now I can barely stand

If You're everything You say You are

Won't You come close and hold my heart

I've been so afraid, afraid to close my eyes

So much can slip away before I say goodbye.

But if there's no other way, I'm done asking why.

So many questions without answers, Your promises remain

~Hold My Heart, Tenth Avenue North

Stumbling over choice

Four weeks ago, I *quit* sleeping with my children. Well, sort of. At least until 4 a.m. About one out of every three mornings, I wake up with one or both of the two youngest snuggled up to me. When dawn broke one morning last week, pink on the pillow above Amy's shoulder, I sat in awe almost long enough to forget to grab my camera. But not quite!

Cancer - and, more recently, Amy's life-threatening brain infection - brings a lot of things into question. Life has become a tedious and sometimes terrifying balancing act between discipline and making room in your life to experience joy. Right at the moment, I hear the happy sounds of kids playing Thomas the Train and cowgirl who-knows-what in the background, but my brain is entrenched in a variety of pots boiling on my mental stove: school, a grant I'm writing, some Facebook drama with long-lost friends, an old friend I'm missing, the baby I'm mourning, the blog I'm writing. My natural tendency is to parent just enough to keep the wheels rolling smoothly on this family bus I'm driving. Break away from my work only when discord pops through the surface. Pull my arms away from the computer, the dishes, the laundry, the scrubbing only if someone really begs, cries or screams.

You could argue that there really isn't anything confusing about what I should do in these instances I've mentioned. And I freely admit that this is a shortcoming of mine - focusing more on the polish of the home and less on the deep, gear-level work that needs to be done. Keeping it neat and functional, and hoping all the deeper stuff just works itself out. A verse memorized when Katy was about 18 months old snaps me out of this trap frequently: a child left to himself brings shame to his mother. (Proverbs 29:15b) I cannot choose short-term benefit and ease without trading long-term benefit and glory.

Last night, a more subtle quandary arose: Amy has had three "bad days" in a row. Three of the worst days she's had in a while. Her eyes just won't track, she feels "tippy" and has had balance issues, which were almost completely resolved. She seemed on the verge of the focal seizures again yesterday. Finally came the end of an exhausting day, a day when I spent a lot of time ("too much time", it seemed) on the couch with her in arms, reading, comforting, soothing, loving. And, of course, as all sick children do, she wanted nothing but MAMA at bedtime. It was one of those moments where I chose the hard line, much to the dismay of my instinct: no, Amelia, you must stay in bed and sleep with your sister. This new covenant we've formed in our marriage that surrounds our bedroom and bedtime and developing Engedi in our everyday married life...it demands attention. But to the exclusion of this fragile child who may or may not emerge from the shadow of this illness? Whose life and especially function is still under such question by the top specialists in the region? It was just one of so many millions of similar moments in the past 2 years: I walk away, fists resolute at my sides, mouth set, voice firm; heart screaming protest, prayer of supplication forming a volcanic explosion straight from my heart to the Throne (the Mercy Seat). After so many moments like this one, you would think I would have the answers figured out. I would have a system for coping. I should have made my peace with the fact that life must be lived as though good will happen, not bad; yet hearts will wonder if bad might happen, rather than good.

I woke up this morning, alone with my husband long before dawn. (Please don't ask how I like rising at 4 a.m. Let's just say it is a sacrifice that is well worth making.) No Amelia. I rushed to her room and watched her little chest rise and fall, blissfully asleep next to her sister, arms entwined. It wasn't until I listened to this song this morning that I reconciled - again - the Promise and the warning that always stand side by side in the subtle moments of decision. These moments, when laid before the Throne, may be unfulfilled, may be unrestored, but they are redeemed.

For every choice that led to shame
And all the love that never came
For every vow that someone broke
And every lie that gave up hope
We live in the shadow of the fall
But the cross says these are all
Places where grace is soon to be so amazing
It may be unfulfilled
It may be unrestored
But when anything that's shattered is laid before the Lord
Just watch and see
It will not be unredeemed

~Unredeemed, Selah

Nothing on my tongue but Hallelujah

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

~ written by a sinner like me::Leonard Cohen, 1981

Today I am comforted by other struggling sinners, and the Word that washes away fear and doubt. Fullers' soap strips me bare: scours, scrubs, bleaches, and beats me. But leaves me clean.

But who may abide the day of his coming? and who shall stand when he appeareth? for he is like a refiner's fire, and like fullers' soap:

Ye have said, It is vain to serve God: and what profit is it that we have kept his ordinance, and that we have walked mournfully before the LORD of hosts? And now we call the proud happy; yea, they that work wickedness are set up; yea, they that tempt God are even delivered.

Then they that feared the LORD spake often one to another: and the LORD hearkened, and heard it, and a book of remembrance was written before him for them that feared the LORD, and that thought upon his name. And they shall be mine, saith the LORD of hosts, in that day when I make up my jewels; and I will spare them, as a man spareth his own son that serveth him. (from Malachi 3)

why?

My heart cries to you out of the darkness
I am laid low in this cave
My soul finds no peace
on a bed of stone all the night long
You are the God who performs miracles;
you display your power among the peoples.
Where is your miraculous hand, O God?
Why are you silent now,
when you spoke so loudly in days past?
The troubles of my heart are enlarged:
O bring thou me out of my distresses!
Why did you shatter my illusions when I came to you for help?
Why did you allow that hour of happiness
when you knew the pain to come?
I am content in a place of peace and mediocrity
Yet you draw me forth to the valleys and mountaintops
to revel in your glory,
and to descend into pits and call out your name.
But you are he that took me out of the womb:
you made me hope when I was but a babe upon my mother's breasts.
O my God, I cry in the daytime, but you hear not;
and in the night season, I cry, and am not silent.
Where are you now, O God?
Heal my soul, that I might sing once again,
with the poets who clung to you in ages past,
thou art holy,
For you have not despised nor abhorred the anguish of the afflicted;
neither have you hid your face from him;
but when I cried unto you, you heard.
I will pay my vows before your holy congregation.

my own psalm of anguish, echoing words from the sacred
Psalms 77, 25, 22

See our tears

A long, giggly conversation with a good friend was just what I needed. That, and remembering what their family has been through. Remembering that this trial will not consume me. This trial will not erase what has gone before, nor will it render mute the future God has in store for us. It is just a low valley in the middle.

My friend's dad was held in captivity in Eastern Europe, while his daughter and her family faced crisis after crisis in the health of their tiny son, Caleb. We named our own son after this amazing little warrior for the Gospel. What that grandfather must have been thinking as he sat, locked up and helpless, and prayed the prayer of Hezekiah from the Old Testament! How encouraged I am tonight as I read that story and believe anew that, as Jesus told us, "With people this is impossible, but with God all things are possible." (Matthew 19:26)

In those days Hezekiah became ill and was at the point of death. The prophet Isaiah son of Amoz went to him and said, "This is what the LORD says: Put your house in order, because you are going to die; you will not recover." Hezekiah turned his face to the wall and prayed to the LORD, "Remember, O LORD, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes." And Hezekiah wept bitterly.

Before Isaiah had left the middle court, the word of the LORD came to him: "Go back and tell Hezekiah, the leader of my people, 'This is what the LORD, the God of your father David, says: I have heard your prayer and seen your tears; I will heal you. On the third day from now you will go up to the temple of the LORD. I will add fifteen years to your life. And I will deliver you and this city from the hand of the king of Assyria. I will defend this city for my sake and for the sake of my servant David.' " (from II Kings 20)

Lift us up in prayer today, please: the "home kids" are at the Gerbers, and Amelia, Grandma Debra and I are at the Blood & Marrow Transplant Clinic meeting an immunologist and a geneticist to determine next steps.

What time I am afraid

What time I am afraid, I will trust in Thee; In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me. Thy vows are upon me, O God: I will render praises unto thee. For thou hast delivered my soul from death: wilt not thou deliver my feet from falling, that I may walk before God in the light of the living? (from Psalm 56, KJV)

I received a call from the neurologist today. Amelia has been formally diagnosed with Acute Disseminated Encephalomyelitis (ADEM), a form of leukodystrophy. She may also have Vanishing White Matter Disease (VWM), another much more severe form of leukodystrophy. The diagnosis of this, or exclusion of it as a potential diagnosis, will be made over time after one or more additional MRIs have been taken. I think it is reasonable that all of you who are praying for Amelia read these two websites to get an idea of what we are facing in the next weeks or months as a family.

When my anxious thoughts multiply within me, Your consolations delight my soul. Psalm 94:19

There are a host of other diseases that Amelia will also be tested for as the weeks go by. I am uncertain when these tests will occur, as some cannot be done while she is on steroids as she is now. Some of the genetic tests may be done as soon as tomorrow. I will leave it up to each of you whether or not you want to follow these links. Some of these diseases are horrific and reading about them may do little to help you and a lot to worry you. Please use your own judgment, and trust, as we are trying to, that God has Amelia in His powerful hands and will help us, when the time is right, to face the entirity of her diagnosis. That being said, the other diagnoses that are now being considered are pediatric multiple sclerosis (P-MS), adrenoleukodystrophy (ALD), Canavan's disease (CD), Alexander disease, metachromatic leukodystrophy (MLD), and Megalencephalic Leukoencephalopathy with subcortical Cysts (MLC).

Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed with our heavenly dwelling, because when we are clothed, we will not be found naked. For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come. Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. We live by faith, not by sight. (from II Corinthians 5)

We are still awaiting the Lyme disease and Epstein-Barr (mononucleosis) virus tests. The equine virus and other tick-borne disease tests have come back negative.

On a pregnancy front, I continue to have symptoms of pregnancy (morning sickness, fatigue, emotional wreck - hmmm, is that the pregnancy, or something else??). My hormone levels rose slightly, indicating that my ectopic pregnancy is continuing at this point. I continue to have bouts of severe (albeit short-lived) abdominal pain and bleeding. The doctor I am currently seeing is unwilling to treat me beyond monitoring my hormone levels; she refuses to do an ultrasound or check my hemoglobin, and will not give me anything for the pain. I need to switch doctors, but haven't had time or emotional energy to search out other options. A friend recommended I look into the local Catholic hospital, which will likely be more supportive of my decision to refuse abortion. I will be looking into how our insurance benefits apply in the next week. Please keep my safety and the life of this amazing baby in your prayers, along with our sanity, our peace of mind, and - foremost - the preservation of the life and function of our precious Amelia Irene.

Simply trusting every day,
Trusting through a stormy way;
Even when my faith is small,
Trusting Jesus, that is all.

Trusting as the moments fly,
Trusting as the days go by;
Trusting Him whate’er befall,
Trusting Jesus, that is all.

Singing if my way is clear,
Praying if the path be drear;
If in danger for Him call;
Trusting Jesus, that is all.
~Trusting Jesus, Stites & Sankey, 1876

"

Overnight deterioration

As we were warned, Amelia has started to deteriorate again as her spinal fluid builds up the pressure around her brain. Overnight, she became combative and her pain level has notched up all night long. She resists diaper changes and position changes because of her back, leg, neck and head pain. She has become extremely light sensitive, and screams in pain and thrashes when they try to check her pupils or eye movements, prying her eyes open. Now this morning she is vomiting again. It is excruciating to watch, as this is exactly how I woke up on Tuesday. It is so hard that we haven't made any progress yet...toward knowing what the bug is, or improving her condition. I am scared. (What time I am afraid, I will trust in Thee.)

The plan for today is a sedated MRI and possibly a line placement (a more permanent IV instead of the temporary one in her hand) while she is under. I am not sure what other tests might be ordered, or if they will attempt to drain off more fluid. I know she will probably buy that ICU bed pretty soon if she doesn't improve quickly. (Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways, acknowledge Him, and He shall direct they paths.)