Top 5 Things Parents Hate About the Hospital

1. There is no privacy. This is difficult on many levels - from private discipline of your child, to having the time and privacy needed to use the bathroom. Ever tried to use only a public toilet for 10 days in a row? Let's just say it can inhibit even the most stolid of personal routines. I remember one parent who threatened to use the toilet in his child's intensive care room: the toilet was surrounded by a flimsy hospital curtain. I always wondered what possessed him to threaten such a thing, and assumed he must have been joking, although he seemed frighteningly serious at the time. Now I have experienced the push/pull of wanting to be by your child's side 24 hours a day - every single second of the 24 hours - and also needing time to yourself for the basic necessities like toileting and eating. What makes a good pediatric nurse? During some down time, they offer to sit and read your ill child a story so you can make a bathroom run or go heat up some food!

2. Living in a bedroom is just plain difficult. Space is so limited in the hospital, and common areas are kept to a minimum, and with limited access, to control the spread of germs. The hospital we've been at has put a lot of thought into group playrooms and access to toys, videos, games, computers and gaming for kids. I am thankful we were there - many smaller hospitals have much fewer options! A good pediatric nurse makes sure patients and families are aware of their resources, and encourages them to leave the room when possible.

3. The food is awful. Not just bland, tasteless, and overcooked. Awful nutritionally, too. I wonder how much more money would be spent if a natural foods chef were hired and some real food was put on the plate? Fresh salad with some mixed greens would be a great first step! Why does hospital food have to resemble cardboard? A good pediatric nurse tells the patient and family what is best on the hospital menu - and makes sure the unit is stocked with some quick, easy alternatives to the cafeteria food.

4. You can forget sleeping! Even if you request no vital sign monitoring at night, even if you hang a "do not disturb" sign on the door, even if you stand watch at the door. Your child will get very little sleep and you will get even less. I wonder if nurses and aids have forgotten that hospital routines vastly reduce the quality of sleep and sleep deprivation reduces healing? A good pediatric nurse is one who thinks first of the schedule of the child, and keeps his or her schedule flexible so that rest and sleep times can be observed.

5. You have to constantly choose between tending your ill child and caring for your children at home. This is even worse when you live far away from the hospital. A good pediatric nurse encourages families to invite the other children to the hospital when possible, and notifies the family of sibling events and areas where siblings are welcome even when visiting policies are limited.

**If you've had a child in the hospital, and you have something to add - or if something else makes your top 5 - please comment by clicking on the pencil and leaving your remarks.

Amelia is home!

We are all under the same roof again, and it feels so good! Thank you for your prayer for sweet Amelia as she underwent sedation yesterday. Her lab tests so far have been good news: no new infection, so what we are observing is still part of the same illness. However, her neurologist is considering changing her diagnosis from Acute Disseminated Encephalomyelitis (ADEM) to Multiphasic Disseminated Encephalomyelitis (MDEM). MDEM is slightly less dangerous and damaging than multiple sclerosis. However, it is a more severe illness than ADEM, with multiple episodes of demyelination that can be triggered by viral or bacterial illnesses, stress, or unknown environmental factors. Each episode of demyelination carries the risk of permanent damage, all the way up to paralysis, mental disability, or death. I took a perfunctory look around the internet, hoping to find a link I could post about this multiphasic illness. There was none - just a few scholarly articles. I am used to living in the margins of normal, but it is even less pleasant when it is your child receiving an obscure diagnosis. The next few months of recovery will tell the doctors a lot about what is really happening in Amelia's brain. Any further exacerbations or "flare ups" will confirm the diagnosis of MDEM. Amelia was also tested for a particular type of protein in her cerebrospinal fluid and blood, which could confirm the diagnosis if it comes back positive.

Amelia and her favorite playroom volunteer, Dee.

Working hard at starting an IV on panda.

Katy gave Amy this cute pillow during her first hospital stay.

Now she "has to have it" each time she is admitted.

Her talisman against long stays?

Out of sedation safely

Amelia just came out of sedation about an hour ago. She did very well during her tests, with the exception of some low heart rates (which, to my recollection, are normal for her). Her MRI was read immediately by our wonderful neurologist, who reports that her brain is healing! Not "healed", but at least healing! That means we can finally let out a long sigh of relief and stop worrying about underlying genetic conditions would show up as worsening demyelination. I could have danced a jig when he said that! As a nurse, I've seen the trajectory for children with those conditions, and it is seriously my very worst nightmare. I am so relieved that isn't the path God has asked us to walk.

Her spinal tap showed that the pressure around her brain is "acceptable". I wasn't given the actual reading, so I don't know how high it is. They feel the fluid they drained off should have the desired therapeutic result of relieving the headaches Amy has had for the past week or so. It is hard to say yet, as she has a bad headache from the spinal tap itself. We should get some preliminary lab results this evening: the white blood cell count in the spinal fluid, the protein, glucose, and myelin protein in the fluid. The cultures will take days to come back, and some of the more obscure disease tests will take 1-2 weeks as they have to be sent to a regional lab at a different site.

Thank you for your prayers. We emerge, once again, relatively unscathed. We are praying now for discharge tomorrow, a quiet weekend at home instead of the adventurous winter camping trip we had planned for my birthday. In light of the events of the week, we will feel blessed and content to be under the same roof with all of our children safe and sound.

Uncle Nick gets a smile from a cranky Amelia last evening.

Reflection from the trenches

Each time the mystery of suffering touches us personally and all the cosmic questions arise afresh in our minds we face the choice between faith (which accepts) and unbelief (which refuses to accept). There is only one faculty by which we may lay hold of this mystery. It is the faculty of faith, and "faith is the fulcrum of moral and spiritual balance". It helps me, at such a time of bewilderment and sorrow, to go to some of the simplest words, such as I am the good shepherd. My Lord chose that description of Himself, and He does not change. He was and is and always will be my shepherd. The word fits my need, for I am a sheep, helpless and bleating. He cannot foget one for whom He lays down His life. I bank everything on that.

~ Elisabeth Elliot, A Path Through Suffering: Discovering the Relationship between God's Mercy and Our Pain

Choices of the magnitude of those facing Aaron and I today are unfathomable. It is as if I have suddenly become blind, and must navigate using unfamiliar senses bolstered by a hefty dose of trust in those around me who offer help. We know that Amelia is not getting better; we know that we don't have a good explanation for her illness; we know that the pressure surrounding her brain is climbing. So we step forward, and accept terrible, wonderful medical intervention. I am uncomfortably familiar with the altar that is the operating table. I have walked up to it myself praying for salvation in the temporal sense: excise my cancer, carefully please, that, by God's grace and your skill, I might live. Today I walk up to that table with precious cargo laid gingerly there. I dwarfed the thin table on which I laid; the tiny form I lay on the table is dwarfed by it. I try to subdue my eyes, which would plead with these doctors and nurses for extra care, for divine intervention that would forestall their mistakes and enlighten their misunderstandings. Try to dose them with just enough of my faith that they see my belief and are strengthened by it. Internally, staying in constant communion and pleading: spare her, heal her, keep her, Father.

I am encouraged that Jesus trod this path before me. I look down and see His footsteps, and the pools of His tears. During the days of Jesus' life on earth, he offered up prayers and petitions with loud cries and tears to the one who could save him from death, and he was heard because of his reverent submission. (Hebrews 5:7) And, though I tremble, I am borne up as I remember to such comes the Master's voice, 'Fear none of those things which thou shalt suffer.' (Revelation 2:10)

Now may the God of peace himself sanctify you wholly...

He who calls you is faithful; he will surely do it.

~ I Thessalonians 5:23-24 ~

No tests today

No time slots were available in the operating room today, so no tests today for dear Amelia. Her tests are scheduled for 2:30 p.m. tomorrow. She was pretty excited to order breakfast this morning!

Amelia slept soooo much better on the hospital bed (usually the reverse is true!). The adjustable bed made all the difference, as she slept in a sitting position all night long. I think it was the best sleep she's gotten since Friday night, when this all started to escalate. She was up at 7, raring to go on her trike, roaring through the halls and terrorizing the tired night shift workers. She started vomiting this morning, never a good sign, especially when the child isn't nauseous.

But she's perfectly happy, regardless! What a trooper.

Sustained

Evening, and morning, and at noon, will I pray, and cry aloud:

Yes, Lord, my soul cries out to you. My heart is screaming

Grant me courage to make words of faith audible.

He shall hear my voice.

Silent or not, He bends from the Throne to listen.

He hath delivered my soul in peace...

The tumult surrounds again, and again I feel

the peace that passeth understanding!

Cast thy burden upon the Lord -

throw, fling, heave all this heaviness onto His wide shoulders.

He shall sustain me.

Hunger, exhaustion, anxiety, desperation.

He fills me, rests my soul, soothes, and quiets.

He shall never suffer the righteous to be moved.

I feel the pull of tides and waves and currents all around.

But on the Solid Rock I stand.

Unshakable.

Unmovable.

I may be undone; I may be unkempt.

But He is unbelievable, and so I am not just a survivor,

I am sustained.

Psalm 55 rings true for me today.

And God's peace shall be Genevieve's, that tranquil state of her soul, assured of its salvation through Christ. Genevieve, fearing nothing from God and content with her earthly lot of whatever sort that is, finds that peace which transcends all understanding garrisons and mounts guard over her heart and mind in Christ Jesus.

~ Philippians 4:7 Amplified ~

Amelia in the hospital again

Quite unexpectedly, we are back in the hospital with Amelia again today. She has had a bad couple of days, as I've written here. She is having what may be some partial, or focal, seizures. She is also having an increase of symptoms that indicate a climbing pressure surrounding her brain. She was admitted primarily for testing, and to evaluate how stable her neurologic status is in a safer setting. Today she had a short EEG (electroencephalogram) to get a baseline of her brain wave patterns under certain conditions. She did not have any seizure activity during the test, although she wasn't really expected to. The test was to rule out the possibility of more severe seizures. Tomorrow, her neurologist is trying to shoehorn her into an operating room time slot for more tests. If they find a time to do it, she will go under general anesthesia to have a MRI to look at her brain structures, a spinal tap to look for other diseases, infection or high pressure, and a bronchoscopy, which will involve putting a camera down her throat into her lungs to view her entire throat and large airway structures. Her ear/nose/throat surgeon back in Eau Claire found nodules on her vocal cords both in September, prior to the tonsil surgery, and again in December, during follow-up after surgery and the encephalitis.

Basically, it is just some more ups and downs. So far nothing big. Please pray her 3-4 hour stint under general anesthesia tomorrow goes complication free. Also for emotional and spiritual strength for Aaron and I as we face more separation and stress trusting doctors with our dear daughter.

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

When mourning chills again

I don’t think the book of Job is about suffering as a theoretical problem — why do the righteous suffer? I think it’s about suffering as a practical problem — when (not if) the righteous suffer, what does God expect of them? And what he expects is trust. When the righteous cannot connect the realities of their experience with the truths of God, then God is calling them to trust him that there is more to it than they can see. As with Job, there is a battle being fought in the heavenlies.

Trust in God, not explanations from God, is the pathway through suffering.

~ Ray Ortlund on the Book of Job

I cannot connect the reality of this experience to truths of God that I hoped for in this circumstance - mercy, hope, love, joy, peace. My spirit shrinks from the idea that it reflected justice, sovereignty, some unknown grace. I still can't bring myself to throw away this pregnancy test, nor the note that accompanied it. I found it perched on the same window sill, where it was abandoned as I rushed Amelia to the hospital with encephalomyelitis the very day after I took the test. I returned home from surgery, the remains of my baby neatly excised, slice, and stored in paraffin wax blocks. And there it was: unmistakable proof that it wasn't a bad dream, it wasn't just a mistake or a test. It was my reality. A miracle...and a mirage...a magnality...and a manqué. Yesterday I spent much of the day processing again, and wondering why it just won't go away. Wishing I could shrug pain and memory off my shoulders like the shroud it resembles. Wishing it never happened. Wondering what pain will enter in next.

I walked into Saver's on Friday, on a mission to find something for the a fun weekend in Ashland with my brother and sister-in-law. On a whim, I prayed as I walked in the door - for cross country ski boots with a three-pin binding pattern. For under $5. After searching the store unsuccessfully for both items I was in search of, I found these hideous blue cross country boots in the bottom of a barrel full of skis. To tell the truth, I don't even know why I looked there. But I did, and there they were. Perfect size, perfect fit, perfect binding system, but with no price tag. I brought them to the front and the clerk priced them at $2.99. Just a little wink from the heavens, one of those thousands of ways I mentioned last week, the ways that God proves himself to me. I suppose I could embark on my first voyage in these boots assuming that I will break my leg. After all, I do eat too much and I'm probably out of shape, and I suppose it could be justice or sovereignty for me to break my leg. Against the odds, I instead feel a sense of hope.

He's unpredictable, this God I serve. Some days the gifts crowd around my soul, and I am warmed and filled by God's goodness, grace, extravagance, mercy. On others, it is losses that creep in and I look around and see ghosts and pale shadows, dust and cobwebs and bottles of tears, and I see God's shoulders and back instead of His face. I emerge slowly from that cold place, and the chill remains on me for a time. I think it is simply the chill of death and grief and separation. While my lips praise the God who saved me from these things in eternity, my body mourns the losses that are still the consequence of the sins of this wandering soul and the entire world.

I choose, simply and quietly and sometimes even resignedly, to trust in God. Not in explanations. Explanations fade and are lost when the circumstances of today are but a thin memory. God will never fade, nor forsake, nor fail.

Even now my witness is in heaven; my advocate is on high.

My intercessor is my friend as my eyes pour out tears to God...

(Job 16:19-20)

2 years in a blink of an eye

Oh, how they delight to serve and celebrate those they love! How easy it is to train them in big life lessons by simply taking them by the hand and leading them along with me in my work. When my day has been busy and long, it is so easy to push them out into the margins, banish them to the most distant playroom, and hustle about my work. But how large the dividend when I beg strength from the Father who so generously bestows, and spend an hour cleaning, baking and decorating with these dear ones.

The older takes the younger alongside and teaches her, the younger sister so intent on every move the elder makes. Raymond and Dorothy Moore (books passed down from my wise mother) taught me it is much easier to teach something once than four times over. And that the best gift you can give your learner is to make her a teacher herself.

He sits like a king in his castle, watching his sisters bake his birthday cake. Sweet boy - just a blink of an eye, and two years gone! I walk the tightrope of time with you, as you lead on into the horizon that is your young life. Take me by the hand, son, and remind me how precious these years are!

Delighted babyhood on the cusp of childhood. The chubby fists just learning dexterity, the cheeks still reminiscent of those that nursed for seven short months. This boy-child will stand like a sentinel in the sands of time, marking off the years God has allowed me to survive cancer.

Discipline your son, and he will give you rest;

he will give delight to your heart.

(Proverbs 29:17)

The finale, which he was almost too exhausted to enjoy. Crazy cake crafted by three sisters and an adoring cousin-twin. Homemade whipped cream from sweet farm milk. Candles, cake, and lots of Thomas the Tank Engine.

Happy second birthday, Mr. C!

Grandma Fern's Crazy Cake

3 cups flour

2 cups sugar

1/3 cup cocoa

2 teaspoons soda

1 teaspoon salt

3/4 cup oil

2 Tablespoons vinegar

2 teaspoons vanilla

2 cups water

Mix dry ingredients directly in a 9x13" pan. Make two wells in dry ingredients, and pour in wet ingredients one at a time. Mix until well combined, using a fork. Bake at 350 degrees for 45 minutes. Go by time - don't test! Goes exceptionally well with a chocolate & coffee buttercream frosting, or served with farm fresh whipped cream with just a hint of vanilla.

Whistle while you work

Whatever you do, work heartily, as for the Lord and not for men,

knowing that from the Lord you will receive

the inheritance as your reward.

You are serving the Lord Christ.

~ Colossians 3:23-24 ~

Years and years of taking the extra time to work with them on small tasks is beginning to pay off. Rosy is my designated floor scrubber, and loves doing it both ways - with the mop and on her hands and knees. She is amazingly good at it, and gets even the crusted on jelly spots and syrup stains.

I suffer this same phenomenon when I am embarking on my Father's work: but look, I can't even begin to wring it out! How to continue when the first step is so enormous and daunting? My face distorts into a grimace, and I falter and flail inside. And then remember those difficult words, uttered by the humble servant, Paul: We work hard with our own hands. When we are cursed, we bless; when we are persecuted, we endure it; when we are slandered, we answer kindly. (I Corinthians 4:12-13a) Work hard; bless; endure; answer kindly. Christian life distilled to four bullet points. How they would revolutionize our daily lives if we but lived them out!

In the grimy depths of my dishwasher (who knew the inside of dishwashers had to be scrubbed? Are you kidding me?), my sweet - and oblivious - son put this sticker, which reads, "Super Job". I could have chosen to ignore that sticker - or worse, let anger be my reaction to a son who puts stickers in the unreachable depths of my dishwasher. Instead, I am going to take it as the pat on the back I needed today.

Is there a frustration in your life that can be turned into encouragement?

**If you are a photographer or artist, I challenge you to go back and look at the first two photos again. Trust me, that floor was extremely dirty. Isn't it interesting how light, even for the photographer in humble settings, cleanses the picture? But if we really are living and walking in the Light, as He Himself is in the Light, we have true, unbroken fellowship with one another, and the blood of Jesus Christ His Son cleanses - removes - us from all sin and guilt keeps us cleansed from sin in all its forms and manifestations. (I John 1:7 Amplified)

Inside lie the seeds

I really should have taken a photo of the outside of this papaya, discovered fresh and quite obviously NOT preserved in any way chemically, at the Mexican grocery store in Eau Claire. Covered in mold, pock-marked with bruises and a hideous gray-green color, I had my doubts that anything lovely would be found within. Yet what that ugly shell held, protected and cloistered deep inside, was the most beautiful, soft orange fruit and glistening black seeds.

I have felt a bit hideous myself over the past three weeks. Rent open by the ax that was the marriage conference, battered and bruised by day after day on my feet, pouring my energy into food for 100 and trying to ignore the pain in myself, my husband, my children, I peered over the edge of my soul into the fissure there with some trepidation. I remember earlier days when spiritual crisis tore me open to reveal something quite different, smacking much more plainly of self and worthy of hiding deep within, far from the eyes of anyone but myself. (Oh, if only I could have hid the ugliness there from the Perfect One) As I approached that same precipice - the precipice where you gaze down into the deeps inside you and come face to face with the truth that lies buried there - I feared what I would see. The fact that there was a fissure, that I was again riven open, brought grief. When you ask deep, caustic questions that have no immediate answer, when doubt and consternation creep in, you are vulnerable. Where is the God of love? I asked. When will He send help? Why is this His timing? Haven't I suffered enough?

There was one dark day last week where I felt my soul closing like the flower that fears the night. Just like the flower senses that the light is dimming in the late afternoon, I felt the cool chill of the air as my soul shrank back from the face of God. I felt fear - for the first time in over a decade - that faith could die again. Facing that reality - that my faith is a fragile, shrinking, changeable choice - was not enjoyable at all. Lord, I believe; help thou mine unbelief. (Mark 9:24) Yet when my faith shrank back from Christ in 1998, pulled away by pain and fear of death and anger over circumstances no 19 year old "should ever face" (culture's lie here in quotes), the questions that overcame it were so elemental. Then I asked does God exist? Why should I give self over for Him? What's in it for me? Why suffer for someone I cannot see?

He has answered those questions. Time and time again, with small details and circumstances that were so unlikely, He proved himself to me. I know, in a concrete way, deep in my soul, that He is there. And He is not silent. (Schaeffer) I know what's "in it for me", I know why I give self over to Him, I know why I choose to suffer for someone I cannot see. I have tasted living Water, lived on it and feasted of it for 12 years. Some of the lies I once believed will never ring true for me again.

And perhaps that is why I was torn these weeks past. Perhaps I needed to glimpse those seeds He has been faithfully planting in my heart over years of faith. What looked so ugly from the outside - pain in marriage; exhaustion of the body; tearing, burning, body-wrenching weeping - had some fruit inside that I never expected to see. What I saw is that He has knit me to this husband, deeply and irrevocably. That no matter what pain drives a wedge between us, it hits the hard, impenetrable Rock that is our foundation, and goes no further. Deep down there, at the roots of my marriage, are the beams that He built and established. A cord of three strands (Christ, Aaron, Genevieve) is not quickly broken. (Ecclesiastes 4:12) What I saw is that Living Water always satisfies, that the deep needs of my soul are met, with or without peace in my marriage, with or without time for reflection or self-care or even sleep.

I find myself emerging from the darkness of these last few weeks of sorrow and hard work with new hope for the future. That was one of the things that was repeated over and over at the marriage conference: in Him, your marriage will find hope. I doubted that, when the first painful work was being done. But in the end, of course, it is true. In Him, we will find hope. I still find myself speechless with mouth open in awe when I try to explain the reason concerning the hope that is in you, with meekness and fear (I Peter 3:15). The hope is there, no question. But how to quantify it, describe it, explain it?

And so, while we wait for the blessed hope—the glorious appearing of our great God and Savior, Jesus Christ, who gave himself for us to redeem us from all wickedness and to purify for himself a people that are his very own, eager to do what is good, I hope because I know whom I have believed and am persuaded that He is able to keep that which I've committed unto Him against that Day. (Titus 2:13-14; II Timothy 1:12) I knew His name before, when I fell away from faith in 1998; today, I know so much more of His character and His love. I can say, truly, deeply, I know whom I have believed and am persuaded that He is able.

Success & exhaustion

The Valentine's Dinner was a resounding success! God smashed our fundraising goal by about $600. And I am tiiiiirrred! Have you ever heard me say that before? Probably not - I only get this tired once a year, in the week following the Valentine's Dinner! That, and I have absolutely NO desire to cook, which is also very unusual for me! Back tomorrow with some reflections of the spiritual kind...

View from the 8th year

If you visited my home, you would notice a scrawled letter framed in a shadow box with a tiny, extremely ordinary rock. It came to me after my husband-to-be spent five days in the wilderness. I expected a tome when he informed me he spent much of the time thinking of and writing to me. I received two paragraphs of the most treasured lines he has ever uttered. These words seem more real with each passing year and each passing difficulty weathered. I had no idea then just how wise he was.

4 June 2002

Dear Genevieve,

This is one of the rocks I found in Vermont. It is also my hope for us. Countless years in that stream have polished its edges, leaving it smooth and soft in the hand. The polish also reveals a few fine cracks, slight weaknesses, the result of tremendous forces in its past. Yet after so many years there remain a few areas, unrefined, that have not yet been touched, that contain the sparkle of still-to-be-discovered treasures.

My hope is that our time together will be a journey of continuous discovery. Polishing that reveals comfort and strength in our relationship but always with more to be learned about each other, ourselves, and God.

Love,

Aaron

Yes, the cracks surface from time to time, and the stresses we survive create new ones. Reveal weaknesses. But our love is just that, after 8 St. Valentine Days...smooth and soft in hand. What was sharp and sweet that first day, when I laughed so hard at every whispered secret, has become mellow and rich. What a wonderful journey God has us on, even though the ride occasionally dips to remind us just how high the heights have been.

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)

Whacked

Remember the game Whack-a-Mole? I feel like the mole. Every time I stick my head out, it gets beaned.

Just in the last few days, drive to town: WHACK. Car dies. Work on your marriage. WHACK. People fail. Go to your cancer appointment with hope. WHACK. You still have cancer. You crushed down old memories and stubbed out the pain in a pile of ashes. WHACK. Memories never die.

When I am about to drift out into the abyss, when the Rock that is the object of my faith seems like just another iceberg in a rough sea, something has to tether me. This day, it was my daughter's hand. She - innocent, eager, trusting - tethered me, bitter, worn, weary. As the King says, I can guarantee this truth: Unless you change and become like little children, you will never enter the kingdom of heaven. (Matthew 18:3) As she looks up at me, cherishes me, wonders at me, and wants to be like me, I simply cannot utter the words that come rushing to my lips...anger, bitterness, irritation, disbelief. Where is God's mercy, where is hope, where are promises and blessings? I'm not sure, but I'm not going to destroy her hope along with mine.

Satan composes a broken Hallelujah that seduces.

My word for 2010 was abide. Stay, remain, to wait, pause, delay; to sojourn, to endure, sustain, submit to; to tolerate; to suffer for. I guess this is where the rubber hits the road, right off the bat in February.

Since my words are so corrosive today, I will leave it at this. I found this encouraging. A bright spot in a dark day.

When darkness fills the valley

Fear and dread strive deep within us

But our burdens soon will be lifted

When these old homes turn to dust

~When He Calls, Emmylou Harris

All things Western

Even the kids are entrenched in the Western theme this week, with the Valentine's Day event fast approaching. We got a vintage horse-on-springs from our local Freecycle list, and it is the current object of most affection around our house. Amy's eye issue persists, as you can plainly see here. However, she seems to be falling less now that she has been on a steady high dose of steroids for a full month without any attempt to wean. I have hopes the eye issue will resolve in the next month prior to seeing her neurologist again in March.

I am off to shop for massive quantities of groceries today, with my mother's help. I covet your prayers for my marriage. We are still thrown for a loop by the marriage conference we attended. I feel like a big "Under Construction" sign should be criss-crossed over my bedroom door. I take hope in this: be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God. (Romans 12:2)

Hello again, blogland!

Almost two years ago now. One more week and my baby is two! Where does the time go? This week is a busy one - always is. Following true to my upbringing, I am the head chef for a major charity event at our church that takes place every year on Valentine's Day. This year, it is a Southwestern themed 5-course dinner followed by a screening of High Noon, the award winning marriage-friendly Western starring Gary Cooper and Grace Kelly. This week is chock full of cooking, prepping, baking, organizing, and trying to keep up with the bare essentials of school, homeschool teaching, housework, and the marriage remake we are in the midst of.

I had my 6-week check with my cancer doctor yesterday. Bad news all around. My replacement hormone levels still aren't in the "suppression" range, which means the cancer that remains on board is free to grow away (stimulated to grow, in fact). I have to go 2 more levels on the dosage of the hormone, which in the past has meant fainting and other miseries like racing heartbeat, night sweats, difficulty sleeping, anxiety, and shortness of breath. I expect to know how bad the side effects will be in about 4-6 weeks. I am already having some return of my heart troubles, so it is disappointing to survey the probability of more in my future. It will be another crazy spring! I also have positive tumor markers. The hope was that they would be negative by now with the suppression hormones back on board. They are not. This means cancer is there, and active. So far, my doctor doesn't want to change the game plan, and will just keep ramping up my dosage of replacement hormone in hopes of suppressing the cancer for another year. I am starting to mull over the possibility of returning to the University of Chicago for another opinion on the plan. It costs over $1,000 for a 30 minute office visit and lab tests, though. At the moment, that seems like a pretty far stretch.

In addition to all this, our van broke down yesterday. We think it is a pretty catastrophic problem, so we will probably be remaining true to our annual tradition of using our tax return to purchase a new vehicle or fund a major car repair. On the bright side, God seems to stay the trial until tax season. So I guess I should be thankful?

Unnoticed details

Snowflakes in a forgotten planter on my porch.

God's details :: glory in our noticing

Allegory: redeemed

Perspective is to flowers in a dark room as Grace is to love between sinners.

Allegory

flowers are to a dark room as love is between sinners

When the rain comes

God's promise is raining down on me fresh this week.

When the rain comes it seems that everyone has
gone away
When the night falls you wonder if you shouldn't
find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do

I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away

When the rain comes
you blame it on the things that
you have done
When the storm fades
you know that rain must fall
on everyone
Rest awhile
it'll be alright
No one loves you like I do
When the rain comes
I will hold you

~ When the Rain Comes, Third Day

Have You Ever Been Alone with God? Oswald Chambers (scroll back a day, too: I've linked to my favorite of a two part series)

Engedi

A glimpse of Engedi

Engedi: a desert oasis, mentioned as a place of refuge by both David & Solomon

Before/after

Baby cheeks, lilting eyebrows, dimpled fingers, drawing in breath of delight at beauty...

Amy between meningitis (February, 2009) and encephalitis (October, 2009).

Redemption

You are the first
You go before
You are the last
Lord, You're the encore
Your name's in lights for all to see
The starry host declare Your glory

Glory in the highest
Glory in the highest
Glory in the highest

Apart from You there is no God
Light of the world
The Bright and Morning Star
Your name will shine for all to see
You are the one
You are my glory

And no one else could ever compare
To You, Lord
All the earth together declares ...
Glory in the highest ... to You, Lord

All the earth will sing Your praise
The moon and stars, the sun and rain
Every nation will proclaim
That You are God and You will reign

Glory, glory hallelujah
Glory, glory to You, Lord
Glory, glory hallelujah
Hallelujah

~ Glory in the Highest, Chris Tomlin

Surprise!

Who needs cookies when your mom gives you a bowl of eggless dough?

I have so many daily readers, I decided to pre-publish 7 photo posts before going off on my break from writing. I have also included a link to a favorite blog post from another writer that you might enjoy today.

"Rebel"utions instead of Resolutions