A newborn baby is a good example to me, a struggling adult.  My little nephew Robbie loves to be held.  He sleeps right through the sometimes rather jostling transitions from one set of arms to the next, puts up with the childlike mistakes as his little cousins pinch his cheeks, pull on his arms and legs, and kiss him roughly.

He's okay with the fact that he has needs.  He doesn't even think about the possibility that someday he'll move beyond those needs...the needs he has for this family he's been planted in.  He just soaks it up.

Maybe it's a little easier for him than me.  After all, he probably lacks any vision of independence, and certainly he doesn't have to wonder whether or not he should ask for help.  The cries come, instinctively, when he is hungry, cold, tired, wet, or uncomfortable.

Earlier this summer, I became intimately aware of my pride when it comes to asking for help.  Someone said, in an offhand manner, that, although I am always willing to help others in my church, it is often me who is asking for help.  That rubbed me the wrong way.  Enough so that I definitely pondered never asking for help again.  Enough so that I have had a lot of emotional angst as I go through another season of needing transportation assistance to even make it to the few doctors appointments that pepper our family schedule.

Here is another example of the faith of a little child. (Luke 18:17)  Robbie is without anxiety over where his next meal or cuddle or dry diaper will come from.  He has no second thoughts when squawking for help when he needs it.  He doesn't worry about repaying his parents and family for all they do for him.  (Come to think of it, how often does that thought even occur to us as adult children?  Do you worry about repaying your parents for the 18 or more years they supported you financially, emotionally, spiritually, and psychologically?)

God uses the gentle touch of a great-aunt on fresh-from-the-womb baby skin to speak deep to my soul.  To teach me new humbleness and grace.  To let go of my worry and pride and participate in this big, messy family called church.

Our church is going through the "one another" commands from Scripture this summer, building unity and revitalizing our church after sending a large group of committed members on the church plant this spring.  I found a great list of the "one another" commands here.  The verse that jumped off the screen as I read it:
Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves (Philippians 2:3).
I can easily see how that relates to serving others.  But the flip side of this verse is allowing others to serve me.  Is it not selfishness or empty conceit that would propel me to turn down a casserole brought to my door or an offer of babysitting from a friend?  Lord, deliver me from a mindset that sees only how I can serve others, as though I have no needs or am somehow better off or stronger than those I rush in to help!  Let me find a balance between being a washer of feet and sitting humbly in my seat while mine are washed.  Deliver me from pride that drives me toward independence and isolation, and help me allow myself to be held by those who love me and love You.

Lord, deliver me from the desire to be noticed, loved, exalted
Lord, deliver me from the desire to be favored, popular, chosen or acknowledged
Lord, deliver me from the fear of being wrong, forgotten or ignored
Lord, deliver me from the fear of being humiliated or left behind
~ Lord, Deliver Me by SaraBeth Geoghegan ~


Windswept.  We spent our last morning on Folly Beach watching the sunrise just a few weeks ago in South Carolina.  The kids in p.j.s, adults hungering for crabcake eggs benedict at the Lost Dog.  I feel the same way...scrubbed clean with exhaustion, soul adrift in a quiet sea, eyes heavy...today.  Headache is through the roof painful, infection seems a bit worse today in my pacer pocket.  The doctor was on the fence but decided it doesn't look "grossly infected", so I can stay home, take my oral antibiotics and avoid a surgical revision of the pacemaker, at least for the moment.  My comprehensive exam has been resubmitted.  If all goes well and I pass the written portion, I will defend sometime the week of August 2 (i.e. next week).  Luckily, I have my defense slideshow pretty much prepared from last time.  But it would definitely be helpful to stay out of the hospital for the intervening days.  I do NOT want to defend in a hospital gown! (but I will if I have to!)

Deliver us from evil

We had an amazing weekend camping with our friends and co-leaders from small group, the Bergs.  They brought swords for all the kids and we had knights and princesses slaying dragons, storming gates, and defeating giants throughout the campsite all weekend long.

In the early morning hours Saturday, the campground was hit with a storm of amazing proportions.  We were awakened by the crack of a tree getting hit by lightening somewhere near by, and huddled in fear and awe as electricity arced over our tent ceiling and we were showered with sparks.  Later, when Katy and I left the relative safety of the tent to use the bathroom, we found that our tent was surrounded by a 3-5" lake of water and a swarm of toads fleeing the monsoon-induced flooding.  Aaron commented that it seemed almost Biblical, this storm we were riding out in a flimsy nylon boat.

We survived the night.  We woke in the morning and heard the news that a truck a mere 50 feet from our bed had been struck and completely destroyed by the lightening bolt.  We toured the paths around our two campsites, and found that the bolt had first hit a tree about 30 feet from the Thul tent, then traveled through the root systems, exploding and burning the roots and leaving eruptions in the earth like an earthquake.  We had felt the static electricity, and it did seem to cause me some trouble with my pacemaker and Amelia a day of clustered seizures.  The neurologist confirmed that abnormal exposure to electricity can briefly worsen seizure disorders.  Luckily, the electrical system of my pacemaker seems to be functioning fine.

We had planned to borrow a metal pop-up camper from a friend, but plans fell through at the last minute.  I wonder now if we would have been hit if we had been connected to the ground with a large metal jackstand.

Despite the odds of being struck, we were.  The fingers of electricity traveled beyond the Berg's tent, between our tents, and beyond our tent.  Three fingers, like claws in a desperate attempt to grasp us.  Defeated - the fingers spread out and our tents slipping through.  Despite the odds of surviving a direct hit, we did.

With every passing day, this string of trials seems all the more absurd and indescribable, even to those of us going through them.  Aaron and I agreed, in the dark of night last night, as we reflected on this weekend: we are glad the Bergs can corroborate our story.  It doesn't seem believable.  Who goes through what we've been through, and then gets struck by lightening?  What is it we are up to...as a church, even as a family...that garners such an uninterrupted and focused attack that comes at us from all angles?  Is there something about our mission, the church plant we've recently taken part in as a church, what we're teaching these children, that doesn't sit well with evil?

As we come out of an amazing and refreshing weekend, we are hit again with more trials and more blessings at home.  My pacemaker incision is infected, and I spent the evening in the ER getting a big dose of IV antibiotics.  Now I am on an oral antibiotic and need to go to the cardiologist again tomorrow to have the incision looked at.  More appointments sucking up time.  Amelia's seizures are still clustering after the lightening strike over the weekend.  Would you pray healing for us?  Would you keep both her and I lifted up in prayer?  I am faced with surgical revision of my pacemaker pocket, living without the pacemaker for a few weeks while I receive antibacterial treatments deep within to treat the pocket in my chest.  In addition, I am at risk for an infection of my heart muscle.  Amelia broke both of her cheekbones in her fall last week, and will need surgery on her nose if she suffers another injury to it.  We need protection.  We need Jesus.

This morning, Caleb accepted Christ - at least, we think he did.  When one of our babes does this so early, we watch for months, not sure whether to believe their belief or not.  So far, not one of the children has surprised us, though.  Katy got saved at almost four; Rosy at three; and Amy and Caleb both at around 2 1/2.   Time will tell.  I praise God for Caleb's sweet words in prayer this morning.  "Dear Lord, thank you for this day.  I sorry I do bad things.  Tank you for sending Jesus to pay for my bad things.  Tank you for saving me from my bad things.  I want you save me, Jesus."

You calm the storms at night
You turn the dark to light
You're everything and that
is who You are

My savior
my healer
that is who You are
my maker
my father
that is who You are


Reading the lyrics of "Wonder" by Natalie Merchant the other day brought me back.  Made me think some things over.  I had to scan a few photos in for another post, photos from my childhood album.  This is my favorite picture in that album.  Whenever I start thinking I might be making some headway in this photography hobby of mine, I look back and I am reminded that I have a long way to go to match my dad's black and white film and Canon A1 with it's old kit lens...a photojournalists camera, his first major purchase as a high school student.

I remember fainting and nearly dying at a friend's wedding when I was in high school.  I remember them thinking I was pregnant and hemorrhaging or something, and how I said a thousand times through gritted teeth that was impossible.  Made some remark about a second virgin birth.  I remember that it felt like an accomplishment to have these graduation pictures taken...to graduate.  Already, I was sure of nothing.

There was a day when the tallest of my brothers still fit in my lap.  I remember missing him when I decided to move to campus for my second year of college.  I remember trying to put blush on just prior to this photo so I would look a little less dead.  I look back on that decision, the decision to move out of my childhood home, and it is one of the few I truly regret.  It started an inexorable trajectory that pulled me away from Christ and introduced so much more pain in my life than had to be.

I kept fainting.  I was wheelchair bound for part of my sophomore year.  I lost weight.  I woke up once to a professor giving me mouth to mouth.  I kept taking pictures, trying to learn to be like my dad and mom.  I questioned God and especially Christ.  I didn't understand what it meant to share in His death.

I made new friends and squeezed in a few duets between hospital visits.  I went to Mayo Clinic in Rochester, MN, and they told me I had heart failure and I might need a new heart.  They told me they didn't know exactly what to make of my situation, and put me on six different medications.  It seemed to work pretty well, even though they didn't know what they were doing.  I tried to forget about the God I felt abandoned by.

I kept playing hockey.  I loved it and I was afraid to stop.  I was afraid that stopping anything would mean that I was giving up, that I gave in to dying before I hit 20.  My teammates begged me to take a break after I quit breathing once on the bench and once on a roadtrip home from a tournament.  I ignored them and wore a Medic Alert bracelet.

I graduated from college, even though some said I should never be a nurse because I might put my patients at risk if I fainted while on duty.  I had quit fainting in my junior year and finally got my driving license back for the first time since my freshman year.  I started drinking because I was no longer on cardiac medications.  I gained weight and felt horrible.  I started to wonder if God really was there.  I went to a hundred different churches, temples, tabernacles, home groups, yoga classes, B'hai meetings, and prayer sit-ins.  I couldn't find anything that explained anything.  I accepted, once again, that I did truly believe in the Christian God.  I started to read the Bible every day.  I figured if I could conquer all 1,600 pages of Les Miserables, the Bible should be light reading.  I read straight through and found it surprisingly interesting.

I didn't really know what to do with a new lease on life.  No one could explain why I got sick in the first place, nor why I got better when I did.  Doctors cautioned me that it probably wouldn't last.  I decided taking care of people even sicker than me would be a good start.  I understood what it was like to be a sick kid, so I became a pediatric intensive care nurse.  Some of my patients were on dozens of I.V. medications, each I.V. pump outweighing their tiny bodies.  I worked constantly to drown out the noise in my own head.  I read my Bible every single shift.  Lamentations, I and II Corinthians, and the Proverbs became my favorites.  I wrote notes on almost every verse.  I loved those kids as hard as I could.  I cried with their families when they died.  I kept a book of all the stories I never wanted to forget and someday I planned to write a real book from them.  A little girl named Sissy broke my heart.  I applied to become a medical foster parent so she would have somewhere to go.  She had been abandoned at the hospital to get a heart transplant at age 3 and her parents never could be found until after she died.  She died the day after I submitted my application to become her parent.  I had big questions for God.  I still don't know the answers to some of them.

I kept taking pictures.  I still wasn't as good as my parents.  I spent a lot of my overtime pay on film and film developing.  I broke an engagement.  I tried to get started in a church and failed.  I was afraid to bike some days because I could tell my heart was giving out again.  I prayed that God would rescue me.

He showed me I was redeemed when I held hands with my future husband for the first time during a prayer circle around a dying child's bed.  I didn't know I could ever feel that way about someone in an instant, and I was pretty sure it was divine intervention.  I hoped my future husband wasn't blind to God's will, because my heart was already broken physically and I wasn't sure if it could take another crack.  He wasn't blind to God's will.  He listened to a wise, Godly couple and grew closer to God and got to know me better, just because they said he should (that, and my "algore is a risky scheme" sticker convinced him it was worth a shot).  Somewhere around the time we started dating, my heart stopped again.  Out of the blue.  I was down for 4 minutes and everyone said it was a miracle I wasn't a vegetable.  I signed myself out of the emergency room A.M.A. before they could get a 24 hour hold placed on me.  I didn't follow up with a cardiologist.  I tried to trust God, and failed miserably most of the time.  I told Aaron when he asked me to marry him (well, later on in the evening).  He didn't seem to mind that I might die.  He said everyone does sometime.  We got married.  I was happy for the first time in many, many years, deep down in my core.

We had four kids, even though doctors said neither of us were capable.  They came pretty close together and knocked the socks off the medical world.  I got cancer.  Doctors gave me odds of survival.  I barely listened.  I had a tubal because my heart started to fail again when I was pregnant with Caleb.  It didn't work.  I got pregnant again, and there is another baby waiting for his first hug in heaven.

I still don't know why He put me here.

I still don't know why He kept me here.

I still don't know if it will be my heart that brings me home to heaven, or my cancer.

I do know that nobody has an answer for me, except God.

I do know that it is safer to trust Him than to doubt Him.

I do know that when the day finally comes, and my ticker stops for good, there is a mansion waiting for me on the other shore.

Will it ever stop?

The first hint of disaster came when the roof started leaking yesterday morning.  Again.  Last time, it was during a monsoon.  This time, just a regular old day of steady rain.  And this time it leaked all the way from the kitchen cupboards on the east wall all the way into the dining room.  The entire roofline.  My dad came over and helped me tarp it (scaling the roof is not a smart plan if you have double vision and may faint).  Didn't stop the leak.  The rest of the day was filled with the whir of the clothes washer as we went through scads of towels, and the hum of various fans and dehumidifiers as we attempt to dry out what is supposed to be DRYwall, along with whatever else got soaked in the process, like insulation and other expensive building materials.

Then we had the joy of visiting an old friend we haven't seen in a while.  And picking out baby clothes for Scott and Jamie's twins.  But on the way out the door, Caleb fell out of the minivan.  Onto his head.  Luckily, it appears he is only scraped up.  Maybe a mild concussion.  Nothing serious, but it started to feel like it was piling on.

Then Amy got stuck in a partial seizure.  I haven't attempted to describe partial seizures in much detail because they defy description.  Basically, she is normally a typical almost 4 year old sweetheart, quite intelligent, responsive to instruction, loving to others, etc.  Suddenly she morphs into some type of pre-verbal, emotional, dramatic child who is unable to balance, see where she is going, or respond normally to instruction or attempts to soothe her.  It is frustrating, at the least, and maddening when it hits full stride.  There is literally nothing anyone can do to help her, other than to restrain her and put up with the monotonous cry she loops into.  When she seemed to be coming out of this 1-2 hour partial, we decided to let her go outside to play with her cousins and uncles.  She promptly ran outdoors and lost her balance, falling headlong into a solid patio table that didn't give an inch.  She broke and dislocated her nose, which the ear/nose/throat specialist assures us is a blessing because otherwise she might have a brain bleed.  Apparently, your nose is specifically designed to absorb blunt force to your face so that you do not end up with a life-threatening head injury.  (I should be taking notes.  Next time I decide to face-plant into a toilet, I am definitely leading with my nose.  Hey, it's big anyway!)

So added to an already hectic - though fun-filled - weekend is an extra visit to the ENT surgeon tomorrow.  I also have to cancel a few appointments at Mayo so that I can have her nose re-aligned in the operating room at Luther next week.  I am guessing she will thank me later when her nose is not markedly crooked.  And she doesn't snore.  All definite pluses for a beautiful girl.

Luckily, Katy, Rosy, and Aaron had a fairly uneventful day.  Although Aaron might argue that fixing a roof qualifies his day as "eventful".  My day was full of revising or thinking about revising the comprehensive exam. And applying band-aids to other crises.  Hopefully tomorrow will just be hectic.  Not tragic.

Inside there is silver

Yesterday was another day wasted spent at the doctor.  My headache isn't improving yet, and my double vision and the glowing aura in my vision became markedly worse yesterday, probably because I am spending so much time staring at a screen to revise my comprehensive exam.  The eye doctor gave me good news and bad: my double vision is due to a brand new astigmatism, thanks to changes in my eye shape from the fracture in my eye orbit and the impact to my eye.  Based on his findings in my eye 2 weeks after the fact, this doctor believes I hit the toilet with my eyes open and sustained impact right to my eyeball itself (even I, the oblivious and impervious nurse, find this somehow quite gross).  So I need glasses, for short distance stuff especially, at least for a few weeks.  I am actually quite excited about this.  I found the most retro frames I could, although after some websearching, I am quite disappointed that I didn't hold out for Shuron's Nulady in crystal brown.

Oddly enough, I think I look great in cat-eyes.  If I am a life-long eyeglass wearer, I think I will make it my personal style and go to the trouble of buying vintage frames (I assume it will be harder to get lenses made for them, but who knows?).  So...that is the good news.  Believe it or not.  The bad news is that I have several bubble-like areas on the retina of my right eye, which may detach over time.  The best possible scenario is that they will heal over time and I will have no long term damage.  The glowing aura is from the spots of retinal detachment currently present in my eye, so that would go away if it heals.  The worst possible scenario is that I may go completely blind in my right eye at any time, and quite suddenly.

Once I get through my initial skeptical, pessimistic and irritated reaction (that "old sin nature" rearing his ugly head within), I usually quickly see the silver lining.  It's easy to see here: for some reason unknown to me, I do not have a particular dominant preference for one eye or hand over the other.  Although I have difficulty writing with my left hand, I can shoot, bat, cut, dice and slice with my left, which is unusual for a right-handed/right eye dominant individual.  As far as eyes go, I have no difficulty shooting left-eyed, nor taking photos that way.  If I do go blind in my right eye, it won't be as difficult for me to make the switch as it would be for most people in their 30s.  The other part of the silver lining: the amazingly awesome eyeglasses I get to wear...and just sometimes!  I don't even have to commit to full-time use.  Which is really sweet!

All this came flashing through my mind today when I watched a video a cancer friend had posted, Natalie Merchant's mid-90's "Wonder".  I remember identifying strongly with the lyrics of this song when it came out around the time my heart condition was getting so bad in high school.  I searched for videos of the song to post here, and came across a potentially disturbing one...the original official music video.  If you'd like to think more deeply about the meaning of the words, and ponder whether Merchant's perspective is godless or mocking Satan, watch the original video and comment.  I'd be curious to hear the reaction you have.  For the purposes of this journal, I posted a less confusing video...a beautiful acoustic rendition of the song accompanied only by her own piano part.

Doctors have come
from distant cities
just to see me
stand over my bed
disbelieving what they're seeing

they say I must be one of the wonders
of God's own creation
and as far as they see they can offer
no explanation

newspapers ask
intimate questions
want confessions
they reach into my head
to steal the glory
of my story

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

people see me
I'm a challenge
to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of God's own creation
and as far as you see you can offer me
no explanation

A miracle month

Something amazing has happened.  And there is really no way to tell you about it, except with a few pictures.

Here's the first photo.  Notice the writing on at least 50% of the dates on this calendar.  This is Amelia's episode record, which helps her team of doctors at Mayo decide how to adjust medications, whether to consider surgery, determine whether she needs to be hospitalized or not.  May and June were two very terrible months for both her and her parents.

But THIS is July.  Four days of partial seizures on our travels, in a high stimulus car.  No poop in the pants.  Only a few episodes of vomit.  An Amelia who is almost completely potty trained again for the first time since October, 2009!  An Amelia who smiles more than she fusses, and is learning again, and even growing a little bit.  God is good!

The hardened nurse-slash-pessimist in me knows this might be temporary.  That seizure disorders are rarely static, and that she will definitely grow and outgrow her dosages and we will have months like May/June again.  But all I can do is thank God for today...and yesterday...and the 19 days before that.  For a month without seizures.

Life on the beach

It seems like such an odd place to make a home, yet there they are... thousands of blow holes in the rutted sand where the crabs make their homes deep.  The tides come in and go out, and leave patterns on the sand, yet the crabs hold on tight in the hole they've dug, eat what comes to them, and are perfectly suited to an environment of muck that would detest your average world citizen.

We walked a mile or so of the beach without the children one afternoon, hand in hand.  The difficulties of the week and the friction from separation washed away slowly as the waves lapped at our feet and we padded along on the granite-hard sand, packed by wave after wave.  Kind of like trials.  Those waves reduce the sand to it's minimum volume.  Wash away the dross of whatever sand refuses to be packed down.  Slowly erode the flatness of the beach with the tenacity and repetition only an ocean can boast.  We've been beaten down like that, Aaron and I.  Reduced to our minimum volume, the parts that refuse to submit slowly washed away, the weak parts eroded.  The sand of this beach used to be soft, may be soft again, I suppose...a playground for beach volleyball enthusiasts looking for a soft landing and some recreation.  But at the moment it's a hard packed road where no tracks are left behind.  It's a harsh strand of land.  Not a recreational destination.

Even on the hard-pack, He leaves little notes of beauty.  The funny curly lines between the crab's blow holes, a hash pattern of almost feminine beauty.  The straight marks in criss-crossed pattern where shells have rolled along the packed sand, leaving white trails where their sharp edges dug in as they were pulled back out to sea.  Iridescent bubbles floating along the remnants of surf in the tidal pools.  It isn't a desolate beach.  It isn't even uninteresting. 

Birds circle the beach, searching for prey.  Crabs and snails stranded, a fish if they get lucky.  From the air, their harsh calls criticize.  We've heard the birds circling our beach, the beach of marriage and love and life that has been packed hard by the relentless trials.  All kinds of harsh bird calls come our way, asking why we don't pick up and move, change something, get away from the waves.  Sometimes they even pluck things that we call treasures off our beach, carry them away, gobble them up.  Some question why the waves are so relentless here, why they come at all.  Isn't there something we can do?  If we were really devout Christians, wouldn't we be planted in a safe harbor somewhere?  As we are beat and washed and watch our treasures carried away by the waves, there is a sense of smallness, even sometimes hopelessness.  Yet there is rest, in the beat and retreat of each wave, when you truly feel the mighty hand of God.  His rest is not always peace, happiness, quietness, or assurance.  I found it, a grain of sand on an endless beach of human suffering, in finally learning who I am.  Redeemed, yes...by Him. Saved, yes...by His power.  Assured, yes...but only of heaven.  Prosperous, yes...if only in the jewels of my crown, never to be seen until that great day when we are brought home forever to heaven, where waves will never again drag away the dross, when the process  of reducing my self to minimum volume is complete.  Who am I to shake my fist at a Creator who planted me on an unprotected shore where the waves never stop coming?  Who are we, as Christian community, to say that the only logical home for Christians is in a harbor somewhere?

I rest beneath the waves.  I let go of my tight fists and let Satan pull away those parts of self and mind and body that will not submit to the forces condensing me.  Somewhere above, beyond the crash of the never-ending surf and the cackle of the birds, I hear the deep bass of a rotor beat.  The God of the universe is on patrol. While I lie beneath the waves, I may be bruised, perplexed, persecuted, struck down.  But He will never let me be crushed, abandoned, destroyed or in despair.  (II Corinthians 4)

Charleston & Folly in photos

Aaron's Charleston series:

He caught me in one of those post-cancer moments:
cares tossed to the wind, I spotted a hill forming on the beach 
and gathered the kids to roll down it.  Never would have done that
before cancer.

Some of my photos from an evening at the Folly Pier: