Hello, goodbye

Much to my surprise, the girls wanted to look at the small "samples" I picked up from the hospital last week...the only pieces remaining of the brother they were so excited to have and never met. It was barely the beginning of a dream. The pieces weren't recognizable to our eyes, although the girls were sure they saw little hands and feet in the paraffin blocks the hospital sent home with me. To me, it was just a jumble of sad slices of hope.

We buried him today in a silver urn, next to beloved pets in our favorite clearing in the woods. It was cathartic to speak of him for an hour, to dig the hole in the cold, wrap what we had left of him in a hand-sewn flannel cloth I used with all my other babes. Cover him in flowers and earth, a pile of favorite rocks.








I know this is how death was for all of us just a hundred years ago or so. A final bed, handmade usually. A simple grave dug by those we loved while we danced this earth. Flowers, and earth, and a rock cairn to mark the spot in the wood glen on the homestead that was the final resting place for all the bodies we'd loved and lost before. There is a bittersweet simplicity to this type of living and dying. I wish we could all be buried this gracefully.

It was a good goodbye.

_________________

Thank you for the prayers. Amelia has a brain scan under sedation today, so please, as you read this, lift her up. Lift we parents up as well. The results of this scan will herald another season of mourning, or a season of thanksgiving. We pray for the latter.

And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful. ~ Revelation 21:3-5 KJV

The most wonderful time of the year

In the morning, O Lord, you hear my voice;
in the morning I lay my requests before you and wait in expectation.

You are not a God who takes pleasure in evil.

Let all who take refuge in you be glad;
let them ever sing with joy.

Spread your protection over them,
that those who love your name may rejoice in you.

For surely, O Lord, you bless the righteous;
you surround them with your favor as with a shield.

O Lord, do not rebuke me in your anger or discipline me in your wrath.
Be merciful to me, Lord, for I am faint;
O Lord, heal me, for my bones are in agony.
My eyes grow weak with sorrow; they fail because of all my foes.
The Lord has heard my cry for mercy; the Lord accepts my prayer.
My shield is God Most High, who saves the upright in heart.

The song of my heart echoed in pictures & the words of Psalms 5, 6 & 7

Losing sight of what was promised

Find rest, O my soul, in God alone; my hope comes from him.
He alone is my rock and my salvation; he is my fortress, I will not be shaken.
My salvation and my honor depend on God;

he is my mighty rock, my refuge.
Trust in him at all times, O people;
pour out your hearts to him, for God is our refuge.
Selah
~ Psalm 62:5-8 ~

I found these verses in a note from a dear friend who, in the brilliance and clarity of youth, went to God's word to offer words of comfort where words of her own would not come. This reminded me of how I felt when I had the wisdom, in my youth, to go to Scripture, while adults around me stumbled and stuttered in their humanity when faced with the suffering of another. I am the adult now, and I sat with my Bible open but eyes blinded by tears so many times through these trials. Particularly when I regarded the loss of our baby, such a miracle that first day. Overshadowed by Amelia's illness, the symptoms of pregnancy were a mere inconvenience instead of a celebration of God's gift to us through that one week I had of normal pregnancy. Then, the loss, over four weeks, of what I hoped for and dreamed of. Dreams awakened, not by my own idle thoughts, but by the miracle of life itself within me. I still struggle with the intentional awakening of my desire, when He, in His omniscience and omnipresence, knew that desire would be burnt on the flames of loss in a few weeks time.

No guilt in life, no fear in death/This is the power of Christ in me/From life's first cry to final breath/Jesus commands my destiny. As I look back on the darkest days of my grief, so quickly and easily passed, like the fleeting breath that was a few weeks of pregnancy, I realize my error. In looking intently at the pregnancy, I focused too much on the reflection, neglecting to turn my eyes upon the source of the glory. I saw only the gift, and not the gift of God. With words, I praised Him, but my eyes remained fixed on the promise of another child, not the promise of another child for eternity. In this momentary lapse of eternal perspective, I forfeited the joy in large part. Not that it's easy. I am still going to cry about this. I believe God supports grief and is with us in grief. He grieves with us that this world is cursed because of human sin. But He has also lovingly, lavishly provided the solution to our problem: Grace. His own Son, sacrificed on the cross, so that death will never be the conqueror. And as He stands in victory/ Sin's curse has lost its grip on me/ For I am His and He is mine -/ Bought with the precious blood of Christ. Death for my babe, whose last recorded size, on the pathology report, was 2.45 centimeters long, has been swallowed up in the grave of Christ, when his disciples and the soldiers found an empty tomb. My tears are swallowed up in the gift of life eternal granted by the spilling of His holy blood. What heights of love, what depths of peace/ when fears are stilled, when strivings cease!/ My Comforter, my All in All/ here in the love of Christ I stand. For God, out of sorrow flows joy. And that is the gift offered us in the blood of His son. Believe this miracle happened as reported in the Gospels and other historical texts of the time, and for you as well, out of sorrow will flow joy. That is the power of the blood.

That is the promise of the Gospel. And that is the life I now live. I am redeemed. My unborn child is redeemed. And someday we will both be resurrected and reborn to a life of joy that will never end.

When my heart was grieved and my spirit embittered,
I was senseless and ignorant; I was a brute beast before you.
Yet I am always with you; you hold me by my right hand.
You guide me with your counsel,
and afterward you will take me into glory.
Whom have I in heaven but you?
And earth has nothing I desire besides you.
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.
Those who are far from you will perish;
you destroy all who are unfaithful to you.
But as for me, it is good to be near God.
I have made the Sovereign Lord my refuge; I will tell of all your deeds.
~ Psalm 73:21-28 ~

*Song lyrics excerpted from In Christ Alone, a modern hymn written in 2002 by Stuart Townend and Keith Getty. Click play below to listen to it.

In Christ Alone (My Hope is Found) - Promise Keepers

Home for dinner

If you knew how happy
You are making me
I've never thought I'd
Love anyone so much

Feels like home to me
Feels like home to me
Feels like I'm all the way
Back where I come from
~ Feels Like Home ~

I came home from the hospital at 6 p.m. on Thanksgiving Day. The doctors reasoned that it made little sense to stay in the hospital to take oral antibiotics and pain medication. So they sent me home with prescriptions in hand. A strong dose of medication to help my nausea meant I thoroughly enjoyed the meal that was served minutes after I arrived home.

Yet one more thing to add to the list of thanks. Home. Thanks, kind Savior.

Reminded

I read the Bible on the internet today, which is so much less aesthetically pleasing than the familiar crispy-thin pages of my "real" Bible. But I did find comfort even if the sensory experience was somewhat lacking. Searching for a verse to comfort a friend who was requesting prayer following a death in her family, I came around to Romans. And came full circle to one of my own blog posts. In that post-treatment reflection period of last spring, apparently I found some clarity on the topic of suffering, and I enjoyed re-reading my thoughts now, through the lens of the sufferings of these past two months. You might enjoy reading this as well.

Spinning in the circle

That old familiar place...

I was admitted to the hospital today with a double kidney infection that has also invaded my bloodstream. Prayers are appreciated - for quick healing, some type of family celebration for the holiday, and rest for me in the hospital. It's been a wild month. Amy is also showing recurrence of her symptoms since starting the steroid wean. That has put a whole bunch of scary diagnoses back on the table, so to speak. Please keep her little brain in your prayers. We are thanking God this Thanksgiving...for her wholly intact spunky sweetness today.

Another November

November hasn't been a friendly month for our family, two years running. The oppressiveness of the vista surrounding us is a visual reflection of the darkness of circumstance and spirit that pervades. Death seeps in all autumn, reaching its zenith in this gray, muddy month of wavering between the seasons. Last year, cancer. This year, giving over a child yet unborn and yielding another we've cherished these three long years, submitting bodies to knives in surgery, and waiting almost desperately for the healing hand as the hours tick by without relief.

We know it will arrive, come December. The death scene of autumn's last waning warmth finally gives way to the blanket of rebirth that protects the deep secrets of the earth through the long winter. December is the resurrection of light and sparkle to the geography of pallor laid bare by the wind and inexorable wait that is November.

Yet He whispers, In everything give thanks, for this is the will of God, in Christ Jesus concerning you...(I Thessalonians 5:18) In the darkness of the first frost, the days of mud and gusty wind that follow and wipe your land and your soul clean of hope and beauty and sunlight, give thanks. In the new birth of that first white blanket of snow, give thanks.

In leavetaking, give thanks. Know that with leavetaking come reunions. Trust My timing. It is my will.

Through death comes life. As I showed on the Cross, as I show you in countless smaller ways throughout the long days of your life here. In kittens borne of dying mothers. In children dancing around a mother with cancer. In autumn turning to winter to spring. In everything give thanks.

In friends who face loss. In friends who welcome new, needy life. Friends who walk with you on a road of darkness and shine a lantern of hope, the lantern of Christ's hope, on your stumbling feet. Faithful is He who called you, who also will do it...

Give thanks for scars. Give thanks for living today, through cancer. Give thanks for what it has taught you: that you can wrestle God, although He will always win; that you can wrestle God, but be prepared to limp for a while afterwards; that you can lose to God, and He will still be your Friend; that you can beat on His chest, and He will draw you close. That faithful is He who called you, who also will do it: heal that scar in eternity. Answer your questions in eternity. Hold you close - and those you love close - for all eternity.


Give thanks for miracles. Give thanks for safety. Give thanks for the hope we have that destroys the power of death. Give thanks for tears. Give thanks for loneliness. Give thanks for births of all kinds, and burials of all kinds, too. In everything...

Give thanks for altars and give thanks for healers. Give thanks for pain and give thanks for relief. Give thanks for the agony of waiting, and the reprieve of waiting. Sufficient unto each day...in this, too, as in everything else, give thanks.

Give thanks for the tightropes you walk. Give thanks for the grace that keeps you balanced on them. Give thanks for the rays of optimism that bleed into your soul as they spill from the hands and eyes and lips of your offspring. Give thanks for the tears that spill from those offspring, too, from wells of sorrow that you cannot heal or answer or erase. In everything, give thanks, for this is the will of God in Christ Jesus concerning you.

Coronado and 1,500 of his men celebrated Thanksgiving in 1541 at the Palo Duro Canyon in Texas. A month later, he was injured. His fortune squandered, his health precarious, his heart lonely, he returned empty handed after 2 years of wandering.

French colonists celebrated Thanksgiving in 1564 in St. Augustine, Florida. Less than a year later, the pious Huguenots were pillaged and destroyed by a Spanish raiding party.

The Jamestown settlers held a Thanksgiving feast in 1619 in Virginia, on the cusp of healing from the famine and disease that killed all but 12% of the original group. In his speech inaugerating Jamestown as a "city on a hill" for model Christian community and living, Governer John Winthrop reminded us

wee must delight in eache other, make others Condicions our owne rejoyce together, mourne together, labour, and suffer together, allwayes haveing before our eyes our Commission and Community in the worke.

I am comforted by the permission granted me in Ecclesiastes 3:
To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to weep, and a time to laugh; a time to mourn, and a time to dance...

yet in all these seasons, in all these times, in mourning and in dancing, give thanks.

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

Recovery in the country

Sometimes my life amazes even me. Seriously, I normally walk the tightrope of enjoying the high qualities of living in rural Wisconsin but avoiding some of the less sophisticated habits of country folk. Tonight, though, I had to stop and laugh at myself. Here I am, recovering from surgery, hunched over, barely managing to hold it together. In a desperate attempt to keep husband and children sane and smiling, I agreed to a rather hilarious little roadtrip tonight. We piled into the truck. "Old school" (this is how we explained it to the children). Two toddlers double-buckled in the front lap belt, and the other two kids tucked into the jump seats in the back. Dead deer in the back. All of us wearing at least a smidge of blaze orange. We headed for town to register the deer. Bought some tic-tacs and hung out at the gas station with the local cop, some Mexican farmhands who came in to buy pizza and beer, and several other fellow rednecks with their trucks and slaughter of the weekend. Amy decided about midway through this venture that she needed to pee. I helped her do it - in the street - next to the truck. Spent the next 10 minutes warning the other kids not to step in the pee. Then we piled back into the truck and "old-schooled" our way to the farm to pick up milk. Had fun "scaring" each other in the dark while Aaron filled the jars. Then we bumped our way home over the one-lane wooden bridge, joked about stopping at the country tavern with our brood for some pickled eggs, and ate Christmas cookies for a bedtime snack.

I believe I am fooling myself if I continue to believe that I have not succumbed to the inevitable ways of country living.

Finding a new song

We've found it in the familiarity and trials of sisters finally together to embrace...to play...to relearn the boundaries of living in this family together. Well or ill alike.

We've found it in family celebrations cut short by sudden trips to the emergency room.

We've found it in celebrating our sameness and togetherness with a set of matching hair cuts.

I've found it - the reticent, type A mother that I am - in all the ways I've searched out to make Amelia love living, headaches, and stumbling, and speech impediments and all. Here she is with her radical new hair cut. I cut off that lioness mane with a few tears falling. Because it hurt her so badly every time I brushed or braided or piggytailed.

It's a new song.

There are a few discordant notes.

But we are singing it together.

Stepping in the right direction

We have had a wonderful week getting to know our "old" Amelia while she is on steroids. The neurologist calls daily to check on her progress. Keep those prayers coming!

Emerging again from the shadow of the valley

Seven. I have four children here now, a constant source of joy. And three in heaven, just a dream and prayer when they went home to Jesus. After phone call after phone call yesterday, I finally found a doctor who shared my beliefs about stopping the beating heart of my own child. That doctor was able to reassure me that my baby had stopped developing weeks ago, and probably never had a beating heart at all. Which meant another on my rather short list of worst fears was coming true: I had a persistent ectopic pregnancy consisting only of placental tissue that my own body could not get rid of. Growing inside me and causing the 8-9 out of 10 pain I suffered for almost 24 hours.

The girls and I sat cross-legged on the front room floor as I explained to them that our baby - the miracle baby we were celebrating just weeks ago - is now dancing in heaven with Jesus, Grandma Fern and Caleb Glover (these are their childish reference points for heaven - the people they want to see most when they get there themselves). The anguish in Rosy's sobs was breaking my heart. Searching for a way to help her through this loss, we named the baby together: a boy name from our long list of unused boy names - Theodore, "gift from God", Teddy for short.

Drying our eyes, the children set out for our neighbors welcoming home, and I set out with my mom to the E.R. for the second time in 12 hours. There I was (thankfully!) medicated for pain and vomiting, and began to feel better and wonder if that stabbing pain was perhaps just a figment of my imagination in the long dark hours of the night at home. An ultrasound showed nothing that could be causing my pain, but an astute, cautious Christian obstetrical surgeon - head of the practice here - wanted to explore further with laporoscopic surgery. It was a hard choice, but the methotrexate medication wasn't a very good option for me, either...not with potentially still active cancer lying waiting in my neck. Methotrexate could be the key that unlocks the deadly potential of those currently stable cancerous nodules. So off to surgery I went at 4 p.m.

I don't know all the details yet, as they have blurred somewhat into the post-surgical fog of pain, vomiting, sedatives, and tears. I do know I had a large pregnancy with no living baby in my tube, and that my tube was literally poised for rupture and had already started bleeding. I probably escaped a massive, life-threatening hemorrhage by mere minutes or hours. I had that tube, along with a large section of the other one, removed and re-burned to prevent future pregnancies. Although there is still a one in a million chance that I could become pregnant again, we've done absolutely everything possible prevent it: for the sake of the four I have, it is so imperative that I avoid this type of complicaton in the future. My fertility - or lack thereof - is, as it always has been, completely within God's control. Having exercised my will and intellect to protect my body in the best way I know how, I am now prayerfully placing that aspect of my life again in my Savior's hands.

So tonight Teddy dances in heaven - or perhaps is cuddled in those Everlasting Arms? And I sit uncomfortably in a hospital bed, recovering from a painful day pre-surgery and a painful surgery. The two weeks ahead of our family are once again further complicated with Amelia's neurological status and increased care needs, and now lifting restrictions and pain on my part, as well as a hectic end to a very harried semester in school.

As usual, I am begging for your prayers!

My hope will always stand,
for You hold me in Your hand.
Lord, I'm amazed by You,
How You love me!
~ Amazed, Jared Anderson

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

"

Home again, just as suddenly!

Amelia was discharged this afternoon. After two doses of steroids and some I.V. zofran to fight the vomiting, she was tolerating liquids and keeping them down, and she was no longer running a fever. Our favorite neurologist was on, and took 2 1/2 hours to observe Amelia and take me through the images from each of her CT scans and MRIs. The results of the latest MRI are sobering. The scan showed increased damage in her cerebellum (which is responsible for balance, some speech, coordination, and fine motor skills), and now damage elsewhere in her brain, in her temporal and occipital lobes on the right side. The temporal lobe damage may manifest in auditory sensation/perception, inability to selectively pay attention to visual or audio stimulation, impaired visual perception, inability to organize incoming verbal information, impaired long-term memory, and altered personality and behavior. The occipital lobe damage is mostly apparent in vision-related deficits and altered eye movements, such as the eye crossing Amy is currently doing and her double vision and inability to react normally to visual input.

The neurologist basically asked us to perceive Amy as suffering an acute (sudden) health event that is now a chronic health problem. It will be months or years before the damage is healed, most likely. The steroids should alleviate some of the symptoms in the short term, but once they wear off, the doctors expect a regression or even total relapse into the neurologic problems. The neurologist we like told us to take Amy home today and enjoy the fact that she is functioning fairly well on the steroids, fully expecting that we may be back in the hospital one or more times as we go through the healing - or lack of healing - that is to come. The tests being run reflect the gamut of conditions that could be at the root of this problem - from viral infection or the insult of the surgery, to early onset multiple sclerosis, to leukodystrophy, to autoimmune demyelinating disorders. I feel most hopeful that Lyme disease may be the culprit, and should get the latest bacterial and viral cultures and antibody tests back early next week at our immunology appointment.

Amy has an appointment on Tuesday to begin exploring hereditary causes for this condition. Her current diagnoses are acute disseminated meningoencephalomyelitis (ADEM - more common post-viral or post-immunization reaction in children than adults), rhomboencephalitis (swelling of the brain stem), and Acute Demyelinating Myelitis (ADM), a very rare disorder in children. I will be doing more research on all of this in the next few days.

So, as suggested by the good doctor, I am going downstairs now to enjoy Amelia being home. We are playing Wii and then watching UP. It should be a wonderful night! Thank you for your prayers, and keep them coming - we are into the marathon version of this trial now, and your friendships, encouragement, and help is so much appreciated.

A good day

You just never know how God is going to speak love into your day: for one enthralled 3-year-old, it was a "lights and sirens" midnight ride in an ambulance. The same ride that struck pain through my heart spoke joy to hers.

God is watering my soul in the all-too-rare moments shared between my precious troisième fille - it is but a drop of bitter to the sweetness that these days occur in the confines of hospital walls. All in all, it's been a really great day. Amy is still pretty wobbly on her feet. She is doing a lot of posturing with her legs and feet, which can be a sign of high intracranial pressure (pressure within the skull).

There is no therapy for this bubbly little girl like water. As the shower rains down on her, I watch her soul expanding from a dried husk of the daughter I know and love, expanding, breathing life back into the dear wisp of spice this child normally is.

Her pain dissipates, and we get a glimpse of how much it is hampering her delight in life. If only she could live in the water, she would be a different child these days.

I am thankful that what relieves her most is not drugs or therapy, but some good old-fashioned straight-from-the-ground water, a little warmth, and Mama's touch and attention.

It might just be me...but her eyes seemed a bit better to me this evening. I pray it's a sign of even better days to come!

So far we only have a preliminary report on the MRI: "hopeful" to our rather overly hopeful neurologist, and downright scary to me! Some areas of her brain look "improved" and others look "worse". "Worse" how - that's what I would like to know! No details are available tonight, so I am handing it over to the One who bears my burdens for this night. Neurology won't come around until the afternoon hours tomorrow, at which point the final report should be available. Amelia has an appointment next Tuesday in the dreaded Blood & Marrow Transplant Clinic. Talk about striking fear in my heart. I never thought I'd breath those two phrases in the same sentence - "my daughter has an appointment" and "Blood & Marrow Transplant Clinic". Praying it's just a scare - everyone's overreacting - and I can go back to my cloistered life of relative bliss in the country, never to think in terms of enzyme deficiencies or transplants ever again! I am ready to shake the dust of this place off my feet - and hers - for good.

I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what is ahead.
~ Ira Stanphill, I Know Who Holds the Future

His perfect love is casting out fear

Amy began vomiting, having increased headache, loss of balance, and sleepiness as the day went on yesterday. We went to the Eau Claire ER, where our doctor had paved the way for a quick transfer back to Fairview-University Medical Center in Minneapolis. Amy felt somewhat better by the time we were transported, thanks to some anti-nausea medication that slowed the vomiting. She got her dream ride in an ambulance with lights and sirens on the way to the Cities! I think the ambulance team got a kick out of having someone enjoy the ride for once!

Today Amy is scheduled for a sedated MRI at 3:30 p.m. She is walking a little better this morning, although still listing to the side and tipping if unassisted. She is sitting well, which is better than last time we went through this. Her eyes look pretty good, although the crossed eye has worsened dramatically in the past 24 hours. No eye jerking though, which is good. She is having some temperature regulation difficulties, according to the doctors. I am concerned that the doctors are missing transient fevers, but perhaps they are right. I don't know! Her temp is raning from 96.9 to 99.9, different every time they take it. They are concerned because this can be a sign of worsening brain stem swelling, as the body then can't regulate temperature well. The hope is that the MRI (the less invasive, less risky test) will show something that will point them in a direction for treatment or further testing, so that they can avoid doing the more risky, more invasive spinal tap. After the MRI results are in (probably tomorrow morning), they will decide about other tests. I have requested that they test for Lyme's disease if they do any further lab draws (they still haven't done any, which is kind of driving me crazy!).

So, prayers for today:

• Healing for Amelia
• Wisdom for doctors
• Clear results from the MRI scan
• No problems with sedation
• No abdominal pain/bleeding for myself, as I missed my lab draw yesterday and probably won't get it done today, either; I am definitely not out of the woods on the ectopic pregnancy front yet
  

Pictures of Amy through the Holga lens yesterday afternoon.

Photography for the intrepid

Mind over matter: I used distraction to help small children deal with pain when I was a nurse, and I employ the same trick frequently with my own kids now. Today the pain is mine, and I picked up my camera for some therapeutic "play" this afternoon. It really took my mind off what's going on, and it was really fun! Here are some photography tricks you might like to experiment with if you've got a camera with a detachable lens:


Playing with a Holga lens, disconnected from the Holga body and held in front of the shutter of my DSLR. This yields some fun light effects. You need a spot meter for these types of photography, as your internal meter won't be reliable. The results are also unpredictable (they also are with a Holga lens, but especially so with one not actually attached to a camera). In order to focus, you have to twist and/or tilt the lens until the part of the photo you want in focus comes clean to your naked eye.


Can't afford a good close-up lens but craving the alien landscapes not visible to your naked eye? My dad taught me this great lens trick that he discovered in the 1970's: disconnect your lens, turn it around, and hold it flush with the camera body. This will give you a fixed focal length of about 1-2" (depending on your lens) and a fixed aperture of about 0.7. You can take some stunning close-ups this way - but beware! The internal mechanisms of your camera are open to the elements so you might want to stay away from water and do this only on a calm, dry day if you're outdoors. Your internal meter won't work for this lens trick either, so you'll have to mess around with shutter speeds until you get what you want. I find that with my camera, I have to go up about 10 clicks on the shutter speed, and the internal meter tells me I've underexposed the photograph.