Category Archives: Spina Bifida

Cloudy, with a Chance of Heaven

The kitchen felt sticky hot.  I pulled the cakes from the oven in anticipation of the three year old’s birthday.  A strand of hair fell across my forehead and stuck there.  I brushed it absently, glancing out the window.  It was three in the afternoon.  And it was dark.  A storm was coming.

Toys decorated the back yard.  I went out to gather in the deep summer harvest of random socks, nerf guns, and fly swatters (why not?) that graced the lawn.  The air was heavy and silent.  Creation was holding its breath.  Maybe God was too.

Waiting.

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I pulled the curtain off the entrance of the boys’ secret hideout among the cedars (don’t tell them I told you).  Pregnant raindrops started to land heavily on the pavement, fat with the promise of more.  I ran inside to shake the older children from their stupor intense concentration on a Star Wars Lego computer game.  The lawnmower should be inside.  I needed backup.  Big drops spattered the engine as I lurched forward on the ungainly beast of a riding mower.  Two children watched and directed as I attempted to line up the wheels  on the planks that would get the machine over the step down into the basement.  Twice I tried.  Both attempts stuck the mower deck fast on the threshold.  Rain fell more urgently.

Finally I admitted defeat.  I backed up and parked the puttering machine back where I had found it.  Hail smacked my shoulders and head as my oldest and I threw a tarp over the beast, fighting the wind to tuck it down.  Then we ran inside, suddenly soaked and breathless.  I commanded the mind-numbing zombie-making computer screen be turned off.  Four pairs of eyes refocused on the windows.  We watched the sheets of rain turn the road into a river.  Thunder cracked and shook the atmosphere.  Lightning sliced through the dark sky.  The lights flickered.

The two littlest woke from their naps crying.  Downstairs, we pulled out ice cream cones in the still-humid hot living room.  I opened our current read aloud to the next chapter and raised my voice above the insistent storm.  We stopped briefly when it sounded like a jolt of electricity stuck something close by; everyone rushed to the windows to study the closest trees.  We gazed in awe at the intensity and power surrounding us.

I droned on for half an hour.  Ice cream smeared across my arm.  The storm abated.  Soon, sunlight pierced through the breaking clouds.  The boys glanced at the windows, searching for rainbows.  As the ice cream hit their bloodstream, everyone got restless.  The toddler stood on the sofa and bounced, sending sticky drips everywhere.  Someone sat on someone else and a wrestling match ensued.  I kept raising my voice to finish the chapter until I had to admit defeat.  Again.  Everyone was sent to their respective corners to regroup.  I opened windows and let the cool clear air push into the sticky house.  It was twenty degrees cooler than it had been an hour ago.  The washed air smelled of fresh cut grass and warm dirt.  I breathed in deep and went to start supper.

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After we survived mealtime, the boys spilled outside to run it off.  I left the smashed potatoes to dry on the table and joined the five year old on the porch.  Mist rolled across the back yard in silent wisps.  I patted my son’s head.  “Hey, don’t break my mohawk!” He remonstrated me.  I apologized and shaped the sweaty damp locks back into a blonde point.

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We watched the brothers chase each other, screeching and blaming each other for tripping in the damp grass.  The toddler chose a puddle and sat down decisively, immediately saturating his clean diaper.  Blue chalk decorated several rungs of the deck.  Even the hard rain hadn’t totally cleaned it off.  I was trying to silence the busy-mom-voice in my head that was commanding I turn around and attend to the congealed potatoes, when a little voice echoed over my internal argument.

“Mom, why does heaven take so long?”

Busy mom went silent.  My mind searched wildly for wise mom, who always seemed to hide when I needed her.  I’d wondered myself.  Buying time to get wise mom to appear, I prodded for more.  “What do you mean, honey?”

“I’ve been waiting for heaven a long time.  When do we get to go?”

I smiled slightly.  He was 5 years old.  I remembered his birth like yesterday.  And suddenly here he was, sitting in a shiny wheelchair, asking hard questions in a well-spoken, shrill voice.  But 5 years is a long time to not walk…

Finally honest mom surfaced.  (When wise mom hides, she’s a willing sub.  Wish I chose her more often over blabbering-idiotically-mom!)

“I don’t know, Ben.  Waiting is always hard for me too.”

My heart ached.  We watched the boys run.  Past conversations about heaven drifted through my mind as the fog rolled across the field, softening the blades of grass, till it was hidden under the cool blanket.  We have often said that in heaven, my colorblind son will see brighter colors there than those of us with “normal” eyes ever could here.  Heaven will be “more real” than the best our senses can do to experience earth, and our abilities will be far stronger when they’re unfettered by commotion, distraction, pollution, germs, stress, and biological imperfections.  Ben will run faster than anyone ever could on earth.  It will be awesome.  I wished he didn’t have to wait for awesome.

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“God makes each of us a little different, some a lot different, because we each have a different job to do before we go to heaven.  He has big plans for you.  I know He does…”

Honest mom sounded lame.  I wished I could give him some assurance that God does what is best, and what is best is usually hardest.  But try explaining that to a five year old.  I admitted defeat for the third time.  And hugged him.  “I’m glad you’re here right now.”  He patted my back reassuringly and slid out of his wheelchair.  He crawled to the ramp up to the trampoline where he jumped on all fours, sending the toddler with a sagging diaper bouncing amidst fits of baby giggles.

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He is waiting.  We hold our breath, knowing there are storms on the horizon.  Half a dozen times since Saturday, he has asked me, “Why am I like this?”  and I give reasons.  But it’s hard, in the heat of the moment, to accept them.  So we brace to weather the storms.  I hope I can shelter him through some of them.  In them he might be scared, but he can also experience the power of God in his life.  I don’t want to be so distracted by the fly swatters, and video games, and cold potatoes, that I miss awe and wonder hidden in the cloudy days.

The clear air after the rain will be worth the wait.

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Beautiful Feet

I love my kids.  A lot.  But (sometimes) I am fonder of them in hindsight.  So I count the hours till bedtime. Then the minutes. I sigh with relief as I close their door and feel the stillness of the day for the first time since 6:59 that morning.
Now, dishes await me in the sink.  There is still mushy banana and cold rice under the table to sweep, wipe, and pick up with grudging fingers.  I have lessons to prep for tomorrow. The bag of hundreds of plastic army men exploded in my room, but I wanted the boys in bed so desperately, I didn’t make them clean it up.  So I do.
But later, much too late later, after finding the floor and the bottom of the sink and pulling every last plastic sniper out from under my pillows, I will quietly open their door.  The room hums with the gentle breathing of the fullness of life in bunk beds.  The fan masks my steps on the creaking floor. I peer into each bed in the darkness.  Adjust a blanket.  Ease a matchbox car from its imprint under a cheek.  And pray.  Silently, briefly. Over each tousled head.
“This one,” I murmur softly, “Give him more patience with the world tomorrow. Heal his skinned knee.”
“This one,” I stretch to reach the top bunk, “Focus his intensity on good. And show me how to reach his heart.  And help him stop chewing his fingernails.”
I am not a prayer warrior. The whole business of prayer, of communicating with a supernatural Creator – I don’t understand.  I have seen people healed through prayer. And not.  I have seen miracles.  And not.  I have begged for answers.  And sometimes been given them.  But I know two things about prayer.  God told me to do it.  And it causes me to talk to my Maker.

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I come to the strawberry blonde in the bottom bunk.  His head is disproportionate to the rest of his young body.  Quietly, I pull the Captain America blanket around his frame.  A foot sticks out.  I tug on it, gently, a ritual every night in the dark.  Stretching the heel muscles that do not stretch themselves.  He doesn’t notice; he doesn’t feel my touch.  Of course I think his feet are adorable.  Perfect.  Warm and soft.  But they are different from his brothers’ callused feet.  The familiar ache wells up in my heart.  For the thousandth or maybe hundred millionth time, I pray desperately, “Heal him, God.  Make his body whole.  Make his nerves work!”

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But God doesn’t.  Not tonight.  So I have learned to pray the prayer that aches even deeper in my heart.  “Use him, God.  Make his feet beautiful on the mountains.  And on the linoleum.  And pavement.  Save his soul.  Make him Yours.  Make his life count.  For You.”

And over each young blonde head, I say the same.  Perhaps I expect less from the others, in some ways.  They don’t have a leg up, pun intended; they don’t have the automatic platform that their brother has been given.  He who was born with a death sentence has the power to effect lives.  The others have been given full use of their bodies.  But my son with Spina Bifida, he has been made in the likeness of the Savior Himself, made weak that others could gain strength through him.  I tremble at the great commission my three year old unwittingly has been given, and wonder again how I can be mother to this cause.

Perhaps Mary pondered the same thing in her heart, gazing at the dark lashes of the Son of God as he slept though boyhood dreams at night.  Even in his youth, I imagine, little Jesus taught His mother to pray in ways she’d never known she would.  Never knew she should.

Sometimes she wished He wasn’t so different.  Sometimes she trembled at the thought of the prophecies of suffering and swords in their future.  How could the Son of God be so normal – so weak?  How could the Savior of the world die?  She wished the pain would go away.  She prayed He would be safe, normal, have a stable career, a family… She prayed that He would save Himself.  But God said no.

And my own son, he is not a savior.  He is three and his favorite word is “no.”  I ask him to come and he scoots his wheelchair the other way.   But he has a purpose.  When I prayed for him, still in the womb, I ran to my Bible and got only the promise of pain.  And I pondered.  And I pleaded.  Take this cup from me.  From my son.  But God said no.

Because He wants more than that my son be safe.  Or successful.  Or happy.  Or normal.

He wants him to live bravely.

He wants him to live fully.

He wants him to live.  For real.

So I am learning to pray.  For real.  Because in hindsight, his soft feet may prove stronger than the calluses on any marathon runner.  Not only will they never feel the pain of stepping on a plastic army man.  They will be beautiful.

How beautiful upon the mountains
Are the feet of him who brings good news,
Who proclaims peace,
Who brings glad tidings of good things,
Who proclaims salvation,
Who says to Zion,
“Your God reigns!”    

-Isaiah 52:7

First time pulling himself to standing!
First time pulling himself to standing!

My Ride to the State (of) Fair

Crunch.

That’s not what you want to hear when you turn to back up the Yukon.  Six pairs of curious eyes under the age of 7 looked back at me from the back seats.  (Well, five; the baby faces backward.)  “What was that?” my six year old asked innocently.

I ran through the possibilities.  Human?  No.  They were all accounted for, thank God, and the parking lot was mostly empty.  Ice?  The tar was covered in it; a chunk could have dislodged from under the fender… But it sounded bigger.  The options narrowed.  Heart beating faster, I hopped out of the huge vehicle and slipped around the back.  Shoot, I guessed right.

It was Ben’s empty wheelchair.

It was turned sideways, stuck under the back fender.  I pulled on it hopefully.  It didn’t budge.  Apparently in the bustle of getting everyone buckled and sedated with bubble gum and keeping their fingers out of each others’ ears and hollering over the hungry baby and another mom helping empathetically to calm the masses while I strapped in the grumpy three year old who knew his suppertime was already late, my system of checks and balances got thrown off.  The wheelchair had been pushed around to the back, probably by a helpful child, after I’d pulled Ben out of it to get into his carseat.  In the hubbub, I didn’t notice I hadn’t packed it into the trunk, and unfortunately ran around the front of the vehicle rather than the back.

the good old chair
off-road

Hopping back up behind the big steering wheel again, I inched forward.  It slid along with me on the ice underneath.  A couple other dads leaving wrestling practice with their sons stopped and sympathetically tried to help.  We rocked the vehicle back and forth.  It only wedged under farther.  Finally, one dad wrenched the chair free while the other drove my huge truck onto the patio area  in front of the parking space.  The wheelchair was a mangled, muddy mess.  Wheels bent, brake broken off, parts of the frame dented, it didn’t look promising.  We scooped up the pieces and put it somberly into the trunk.

“I broke your chair,” I climbed back into the driver’s seat and looked back at my son solemnly.  “I’m sorry.”

He took it well.  “Can I get a new one?  Can it be red?” (The glass is always half full when you’re three.)

“I…don’t know, Ben.”  I drove in silence, eyes on the road.  I didn’t know what lay ahead.

That was over three weeks ago.  What’s left of the chair is sitting in a box in the back warehouse of the medical retailer where we got it.  The good news is the cushion is still good.

The bad news?  Let’s just say, looking from this side,  I wish I could tell that chicken not to cross the road.

Because insurance doesn’t like to cover stupid.

In the last few weeks, I’ve whined and fought and flailed against the insurance companies (not literally,  though I would if it wouldn’t put me in worse trouble) in my head, for creating this agonizing process.  It seems that every necessary authority between us and a new chair revels in denial and rejection.  And paperwork.  Meanwhile, my son pulls himself across dirty cold floors on his hands, dragging his feet like so much baggage.

And I know it was my fault for squashing his wheels, which makes me feel rotten enough.  But as the process of trying to get a new one approved drags out endless, my frustration mounts.  I’d buy him one, but sleek little ergo toddler wheelchairs don’t come cheap.  And they don’t sell them at the local Walmart (though they probably would let me buy one of those one-size-fits all vinyl numbers with the hip-dislocating sling seats and the crooked footrests that park so conveniently inside the doorways of every  big box store as an apology for making you walk a mile across their parking lots).  So I wait.  But not well.  Mostly I complain and shake my fist and cry, “No fair!”

“No?” the quiet response filters though my consciousness.  “You’ve decided this is too much?”  The gentle but firm hand of God rests on my shoulder as I grumble in the kitchen.  “You have decided I am unfair?”

I’d answer, but my mouth has suddenly gone dry.  I want to argue – no, I mean “they” out there – the elusive faceless voices of the institutions that seem to dictate what my son needs.  “They” are not fair.  But I can’t seem to point my fingers while His warm hand weighs on my arm.

“On the 573rd consecutive day of too little sleep, when the oatmeal boiled over, and the four year old decorated the toilet with smurf stickers, and you had to choose whether to pay the mortgage or buy groceries, you came to the end of your rope, and you handed it to Me.  And I carried you through it.  Remember?”

I don’t answer.

“And the day the boys had a wrestling match on the clean laundry piled on your bed and a feather pillow got ripped and it looked like it snowed and you had to show your house to prospective buyers within a few hours, and you cleaned like mad and then they didn’t show up and you got that killer headache, you turned to Me.  And I brought you through it.  Remember?”

The Hand stays on my arm as I sink down to the floor.

“And then the three year old covered himself in chocolate and you couldn’t bathe him because he had a cast on his foot which you should have taken off anyway because it left a pressure sore on his heel.  Remember?”
“And the six year old wrote his spelling words backwards and the seven year old forgot how to carry the one when he added even though he’d known how for months and the four year old pulled out all the red and blue markers and switched their caps and the toddler had a overwhelming fascination with scotch tape and the baby forgot how to nap and you wondered what possessed you to consider homeschooling a viable option.  Remember?”

I nod.  These memories seem so trivial now.

“And then remember when your friend came to you because her husband left her?  Remember when sat with your other friend in the hospital while she watched her child die?  Remember when another friend found out she was pregnant again and learned her husband would be in jail when her child was born?  And remember, not so long ago, when your own son had brain surgery and you laid his lifeless form on the operating table?  Do you remember trusting him to the hands of strangers and walking away?”

I feel His eyes on me.  These memories burn brighter.  Starker.  Still I study the floor as He speaks, gently.  Firmly.

“Child, was I unfair?  Will not the Judge of all the earth do right?  I own the cattle on a thousand hills and the mouse who’s living in your attic right now.  I make nations rise and fall.  I make your heart beat, and I hold the earth on its axis.  I don’t ask you to do hard things because I need them.  I ask you to do hard things because you need them.  This world is not your home.  This is simply the preparation ground for the real thing.  Don’t point your finger at paper-happy corporations, or the government, or bad people, as if you are entitled to something they’ve got.  I have called you on this journey.  Walk it.”

I look up sheepishly, but no one else notices mommy sitting on the linoleum in a sticky mess of humble pie.  Or maybe that’s just maple syrup left from someone’s breakfast.  Then, a moment later, Ben peeks around the corner.  Brightening at discovering me, he pulls himself into the kitchen in a commando crawl.  He notices his walker parked against the wall.  “Walk me, Mom!”  He commands.  I blink.  And obey.

Video of Ben walking

(Sorry it’s dark.  But it’s real.)

“…We have [only] done what was our duty to do.”  -Luke 17:10

Chicken Little

Home.  We are home.  Keep your pancake away from your brother’s surgical head incisions.  Maple syrup is not an appropriate dressing!  I said it.  Oh yes I did.

Welcome back to life.

Here, when breakfast falls on the floor (or gets thrown), there are no housekeepers waiting in the halls to heroically swoop in with a mop at the press of a call button.  But at least the breakfast doesn’t taste like cardboard.

Here, we don’t get tested for fatigue or hair loss because it’s clearly the result of indefatigable offspring who cause the hair to be pulled.  But at least we know the cause.

Here, there is no waiting for doctors or tests or procedures.  Here is breathless.  Busy.  But at least we don’t have to wait.

Here is my kitchen.  There is no cafeteria or room service.  In the hospital, I snacked on pre-sliced mangos and peanut butter energy balls.  Here, if I don’t make it, seven people don’t eat.  But at least we eat (or not) together.

Here, if there is fever or crying or pain in the night, there is no nurse to ease it.  But at least I get to hold my own babies when they need me.

Here I administer hugs and hard medicine, discipline and consequence.  But at least I do it while loving them with all my heart.

Here, I buy the diapers.  Here, I answer the questions.  Here, life falls heavy on my shoulders.  Here, I largely feel as if I am running crazy in circles under a falling down sky.  And I want to panic and maybe just a little bit run back to the sterile stern walls of the hospital where life is black and white and not fifty shades of gray and chartreuse and orange crayons and purple bruised knees and pink eye and chocolate milk spots on the walls…

But at least I am home.  All the crazy that is my normal can resume in its colorful glory.  It is good to be here.

Welcome back to life.

ready to leave the hospital
leaving the hospital

On Thursday, Ben’s IV in his neck looked bad when the visiting nurse came to change the dressing over it.  He has a Picc line, a sort of longer-term IV tube that they allowed us to come home with.  This way, he can still get a good dose of antibiotics for a full 21 days without having to sit in a hospital bed for it.  But this port for the anti-infection medicine looked a bit infected.  Ironically.

So, yesterday, we were supposed to get a new one.  This is small potatoes in the grand scheme of things.  It’s not brain surgery; it’s just a headache.  But it still collides with little things like homeschooling and breakfast (he can’t eat before the procedure, try explaining that to a three year old) and laundry and paying bills and nursing the baby and maintaining some semblance of a schedule and roasting a chicken for supper and scrubbing chocolate milk off the baseboards.  And Friday I spent hours playing phone tag with doctor’s secretaries to figure out who should look at it – just look at it – because I have never seen a Picc line up close before this.  And why do they all ask me if it looks right because I have never seen one before since thankfully this is my first rodeo and I am a novice in this ring but I am on this wild ride and I’m not planning to let go so help me find the stirrup, cowboy… er, doctor.  And they did.  And they didn’t like its look either.  So they took it out.

But we didn’t get a new Picc line yesterday because we have to make sure an infection didn’t creep into his bloodstream while it was open to the wild world.  Instead they drew a lot of blood and injected him with antibiotics.  So we wait to see.  And we get to wait at home rather than in that sterile world of beeping monitors and the stress that gives you pimples.

It is good to be here.

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We came home from the doctor’s yesterday evening, Ben and I.  He winced slightly as I picked him up out of the car seat, but didn’t complain.  He was preoccupied, peering intently past my shoulder at the sky.  “Where is it?” He craned his neck gingerly.  “Where’s the plane?”

I hadn’t noticed the sound yet, but any self-respecting three year old boy wouldn’t let it pass without mentioning.  Of course, we searched the heavens together.

The sky wasn’t falling.  When I looked up into the cold clear January air, it was still there.  The first star twinkled in the East even as the Sun settled in glorious color behind us.  “The sky’s too big; I can’t see the plane!”  My three year old fussed.

“Yes,” I murmured in agreement.  “The sky is very big.”

When I consider Your heavens, the work of Your fingers, the moon and the stars, which You have ordained, What is man, that You are mindful of Him, and the son of man, that You visit him?  Psalm 8:3-4

I stood in awe.  I stood in my frustration and the maybe just a little bit freaking out overwhelmingness of my normal.  I stood under the big sky and felt my insignificance.  I stood there, aware that God has great plans and big hands to hold all that is significant.  And I felt small.

And I felt His heart beating with mine.

After all, the God of the heavens watched His Son bleed too.  He, so big and powerful He could make the sun and hold it in the sky, He also held His Son as his life blood poured out. His Son looked up at His Father with trusting, hurting eyes, and asked if there was any other way.  And His Father looked down at Him with all the love that there is, literally, and said no.  There was no other way.

He loved us, little and insignificant of all His glorious creation.  He loved us, dirty and thankless and more like pond scum than like heavenly stars.  He loved us far beyond our own capacity to love Him back.

He is big.  He is glorious.  He is awesome.  But He knows what it’s like to watch your son be hurt.  He knows that in order to bring life, His son had to suffer.  He knows what it’s like to walk through the messy chaos of humanity, step by humble, muddy step.  He knows what it’s like to be dead and buried.  And then be brought back.

Welcome back to life.

Under that big, solid sky, I breathed in slowly, humbled by the immense place of unity I’ve been given.  He walked under these same heavens Himself.  He’s not sending me on an untrodden path.  He’s been here before me.  Big though they are, I’m walking in His shoes.

It is good to be here.

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I Am Not An Ostrich

I am surrounded by mothers here.  They may not be the best, or the wisest, or even the nicest.  I do not know them.  Most of them, I never will.  In one room nearby, a young mother held her baby today amidst the tangle of tubes hiding the little body connected to them.  Behind a door marked, “caution: chemotherapy”, I heard a child call out “Mommy!” and the quiet murmur of the parent’s reassuring answer.  Another sat tired in yesterday’s clothes as her son molded play dough beside her in the play room.   We’ve watched our children struggle under sedation.  We’ve held them, allowing painful work to be done.  We’ve turned our heads so our little ones will not see our tears.  Most mothering doesn’t happen in a hospital ward, but here, it is starkly clear.  Motherhood can be tough.

Today I will watch my son go into surgery.  Again.  Compared to many moms surrounding me, I am a lightweight in this area.  But still it isn’t the first time, and it probably won’t be the last.  I know this will hurt him.  I know he won’t understand.  But I know his life depends on this operation.  Without it, fluid would build up in his brain and eventually squeeze the life out of it.  Shunts to divert the fluid were invented about the time I was born.  Before that, hydrocephalus was a death sentence.  So I am very thankful he was born in this generation and this is a relatively routine procedure.  But I still don’t like it.

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I just happened to be reading the book of Job this week.  The ostrich in chapter 39 jumped out at me.  One of a handful of flightless birds who get a lot of press in board books and Sesame Street, ostriches are interesting.  Runners with fluffy soft feathers and hips of power – they are eye catching ladies of Africa.  But God Himself calls their motherhood into question.  He made them fast.  He made them big and bold.  But He did not make them good mothers.  “She leaves her eggs on the ground… She forgets that a foot may crush them…  She treats her young harshly, as though they were not hers… because God deprived her of wisdom.”  (Job 39:13-18).

I am commissioned with a discipleship for the next 18 years, times five at least.  I feel completely inadequate for the job at hand.  Ack.  But yet I was made for this.  I am not an ostrich.  I was given arms to carry infants in the dark hours.  I was given a heart to comfort them when they lean hot with a fever against my chest.  I was given a voice they run to on the playground (and cringe at when it remonstrates them).  I was given feet to chase wayward toddlers and awkwardly kick soccer balls back and forth.  I was given a mind to try to answer the endless question “why?”  When my back aches and my eyelids droop heavy, when my heart hurts and my brain feels numb, even then, I was made for this.

A few days ago, a mother came.  She wasn’t related.  She lives far away.  But she came.  She brought fruit, butter, bread.  She held the baby while I consoled my sick toddler.  She brought hot coffee.  She stayed all day, here in this little hospital room, while my husband had to work.  As she left, she hugged me tight, pressing a little money into my hand for food.

Other mothers have come.  Many more have sent notes, food, little toys, crayons, bananas, chocolate, coffee, pictures drawn by their children… And mothers have prayed.  Oh, they have prayed.  My son should not be doing so well.  Mothers, in the quiet corners of their houses far away, are storming heaven on his behalf.  I feel the vibrations.  It brings me to tears.

Has the rain a father?

Who has begotten the drops of dew?

From whose womb comes the ice?

And the frost of heaven, who gives it birth?

Job 38:28-30

Did God make mothers for the rain?  No.  Did He form parents for the seasons, for the heavens, for the earth?  No.  He made animals bear young, some even feed their offspring, some even teach them life skills.  But their young mature and leave and do not return (Job 39:4).  Only the children of men have mothers.  God breathed life into the squalling helpless little life of a child, handed him to a woman and bestowed on her the calling.  This one has a soul.  This one has the breath of God in him.  Over this one, I make you “mother.”

Waking up from anesthesia in his happy place.  Grandma's arms.
Waking up from anesthesia in his happy place. Grandma’s arms.

And though I am inadequate, wretched and in great need of grace myself, He has made me mother. Oh, the irony.  I feel depleted, weak, and unsure of my steps.  But I keep walking.  I keep hugging.  I keep holding.  I feed and clothe and and cry and pray and breathe in the sweet smell of my babies, not because I am confident of my abilities.  I am not strong.

But He has made me mom.  So He will make me able.  That is enough.

 

Bring Me Low

I held my infant son last night in darkness, breathing in his baby smell, burying my worries in the folds of his squishy neck.  He should have been asleep, but then, he should have been in his crib.  At home.

But we were far away.  The IV pump beeped.  A little boy in the bed next to me moaned.  It was my little boy; the IV pump was connected to him.  On the other side of the bed, another tube connected a dripping bag to his head.  I squeezed the warm baby closer and tried to process it all.

Friday morning we went to physical therapy.  Ben was a bit cranky, but life’s not all peaches these days, after all.  Brain surgery was three weeks ago; more doctors and nurses and discomfort and attention than anyone really wants had all added up.  So I took joy in hurrying home to bake him a cake for his third birthday the next day.  I wanted some of that attention to be simply good.

But I looked down at him on the floor, placidly licking the beaters (yes, I’m that kind of mom).  He had no fever; he didn’t act sickly.  But his new shunt didn’t look right.  It should have been merely a bump under the skin, softened by a fresh fuzz of new growing hair.  But it looked angular, irritated, and almost like you could see actual hardware just under the flesh.  I sighed.  Two weeks ago, I had spent most of the night in the emergency room and then drove a couple hours to the neurosurgeon’s only to be told he had a mild virus.  It wasn’t a shunt problem.  It was no big deal.

Was this a repeat?  What if it wasn’t?  I called the neurosurgeon and got the expected response.  “Come down, we can’t tell from here; or go to his local doctor and get their opinion first…”

I loaded the five kids in the car and drove across town to the pediatrician.  They informed me it would be a while.  The five of us sat down and made friends with the rest of the waiting room (we’re that kind of family, by default, since we have five kids and a wheelchair with light up wheels).  A couple hours later, a doctor finally peeked in to our cubicle where the kids where shredding the paper on the exam table.  “It’s not supposed to look like that, huh?” She frowned and squinted at it.  “I’m here to ask you that,” I remonstrated her silently, not surprised by her uncertainty, but not encouraged to hear it.  I don’t want to be the one with more experience with shunts in the room, particularly malfunctioning ones.  “If the skin is open, is that bad?” I pushed her, unhappily.  She dabbed at it.  He squealed.  Clear liquid dotted the skin she’d just touched.  “I’ll call the neurosurgeon for you, ” she offered gallantly.  “And just see what that means…”

A moment later, she returned to the room.  “They want you to go to the emergency room down there; the neurosurgeon will meet you.  And don’t feed Ben anything else today… just in case… ”

I groaned.  It was that kind of shunt problem.

Grandma met us at the house and took charge of the still-unwashed dishes.  I grabbed a cold coffee cup out of the bathroom as I tore through the house, grabbing clothes and toothbrushes for half a dozen people going two opposite directions.  He’ll want his teddy bear.  I’ll want to bring deodorant.  Did I eat anything yet?  Feed the baby and stick him back in the car seat.  Where’s another tote bag?  I really needed to buy diapers today… Who hid the nail clippers?  The boys are fighting; Oh God make them be good for Grandma, please!  Where are all the water bottles?  Why did I put all the baby’s sleepers and my underwear and favorite jeans in the wash this morning?!?  I managed to throw them in the dryer.  Daddy arrived home from work in record time and started throwing things into cars.  I hoped the right bags would go the right places.  We kissed the three oldest and commended them to my own mother’s capable hands.

And we left.

Four hours later, clothed in an attractive sterile paper gown, I laid my son on the operating table at the biggest hospital in the state.  I felt a shiver like Abraham must have as he laid his own trusting child on the altar.  The anesthesiologist held a mask over his little mouth and we sang happy birthday to him as he fought the overcoming effects of forced sleep.  “Good bye,” I whispered to his small motionless form, and kissed his forehead before they ushered me quickly away.  They didn’t let me keep the svelte crackly blue gown either.

This time, it had been a big deal to worry.  His new shunt had somehow managed to work its way up and grate against the skin.  Finally, it had broken through.  Once exposed to the outside world, the whole system had to be removed.  Quickly.  It was an open doorway into his brain.  Any germ worth its name would jump on the free pass.  We found out later he was starting to grow some sinister bugs in his head which could have been deadly within hours…

I saw him after surgery, once again plastered with sweat and the foreign smell of disinfectant.  They couldn’t put a new shunt in until every trace of the invading germs had been destroyed.  In the meantime, he’d have an external shunt, a tube to drain the excess brain fluid into a bag that would have to stay level with his head 24 hours a day.  He’d also be on intensive intravenous antibiotics to kill anything that had gotten in.  We staggered when the first doctor told us it would mean a week long hospital stay.  I’d figured over the weekend, at the worst.  As the next several days progressed, we found out it would be at least two weeks, at best.  Good thing I put the wet laundry in the dryer.

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He woke the next day with a headache and a hospital gown.  The sympathetic overnight nurses had managed to throw together a bright birthday poster for his room.  They even left some tissue-wrapped presents at the foot of his bed.  He wasn’t terribly impressed, but scribbled some crayon pictures around the tangle of tubes anyway.  He very much wanted a birthday cake, which we hoped the cafeteria could accommodate.  (They couldn’t.)

Ben's world
Ben’s world

We struggled through the next twenty four hours in a daze.  The incessant beeping of monitors, the buzzing florescent lights, the utter lack of personal space, phone and Facebook filling with concern, baby and toddler fussing together, bad coffee and well-wishing volunteers…  It is overwhelming and numbing simultaneously.  We are attaining to the big leagues (the lower levels of it, anyway.)  A pimple is threatening my calm countenance.  The baby misses rolling freely on his blanket on the floor.  I miss life sized bath towels and actual beds.  Why did I ever complain about normal before?

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I have walked with God long enough to know that when I ask to know the Lord in the land of the living, everything that stands in the way must die.  And I’m just finishing the book of Job in the Bible.  Pure coincidence, obviously.  If this is what it takes that I may know and prove the goodness of my Saviour, then, well…  I don’t like it.  Honestly.  I’m not going to say I’m glad He’s bringing me though this.  I’m not that good.  I’m pretty grumpy about it all, actually.  But I do know there is bigger stuff at hand.  And at head.  I wish the drain in my kid’s brain would draw out some of the stubborn toddler-ness that’s stuck in there.  It’s clearly malfunctioning in that regard.  He hasn’t said “yes” to a single person here yet.  We’ve got work to do.

 

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Job wasn’t jumping for joy when he lost all his kids and all his stuff and broke out in infected boils all over and his friends called him a sinner.  He didn’t like it either.  But he bowed low and trusted His God.  Even in this.

The valley of the shadow… This is where we are.  But God is here too.

So be it.

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What Does the Doc Say?

There were sick grandmothers, cardboard pancakes, and stuffed puppies.  There were long nights at the hospital.  There was mud, blood, ice, tears, a great lack of rest and a good deal of grace.  And pizza.  This is life.

Ben was scheduled for a shunt revision on Friday.  We spent Wednesday making messes for Christmas, Thursday cleaning up after Christmas, and Friday came before any of us really wanted it to.  Grandma arrived bright and early, and sick with a worthy head cold.  With a wan smile and a will, she gathered up the three oldest boys for an overnight at her house (which didn’t have power after the recent ice storms).  The two youngest got strapped into car seats and headed a few hours south to the hospital with Mom and Dad.

“I’m getting a new shunt!” Ben announced proudly to his grandfather when we met him in the waiting room.  He seemed blithely unaware of what was ahead, and busied himself rearranging icons on Grampy’s smartphone while we waited.  (Kids who haven’t eaten all day because they’re headed for brain surgery get to do these things.)

He got a little worried when we traded his camouflage pants for a colorful johnny, and cried when the nurse offered him liquid medicine to drink.  But as it kicked in and he relaxed into jello, he seemed only concerned that the doctors had drawn on his sheets with markers.  “You can do that at the hospital,” the nurse told him as she marked his length out on the bed with a pen.  “It’s different than at home.”  No kidding.

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jello boy

Then the horrible moment came.  I handed him over to complete strangers.  The possible surgical complications flashed through my brain.  All the promises I made to him before he was even born felt jeopardized and hollow.  I felt like I was sending him to battle when he didn’t even know there was a war going on.  I’ve done it before, I’ll do it again, but I hate that part.

We settled into the waiting room to wait.  My husband squeezed my hand; I squeezed the baby tighter.  Napless and fidgety, he squealed and spit milk seeds on my shirt. (The baby, not my husband…)  I realized I hadn’t eaten much that day since the two year old couldn’t, but the nursing baby certainly wasn’t observing a fast.  An hour trudged soddenly by.  This is what Purgatory feels like.

Finally, the neurosurgeon appeared.  It was done.  There was a new catheter in my son’s brain, a new hole in his head.  A new haircut.  We went to him.  His eyes were closed, a single tear staining the cheek beside his lashes.  He was silent till I picked him up, gingerly, amidst the tangle of wires and tubes.  Then his stoicism melted into tears.  We had to stay in the recovery room until he could hold down some liquid.  He doggedly refused until someone offered him a popsicle.

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He chose red, which I don’t think I’ve ever given him, to match the monitor light taped on his finger.  “Like ET.”  He held it up, brightening as the sugar quickened his awareness.  “Can we go home now?”

“No, we will stay here tonight.” I answered, wishing myself that we could be in our cozy little house without buzzing florescent lights and beeping and wires.  He snuggled closer.  I could smell the disinfectant plastered all over his head.  Praying was difficult; I was distracted, I couldn’t form cohesive thoughts.  But I knew others were covering him in prayer.  It was a great comfort.

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Grampy got him a toy puppy.  His new favorite.

Finally they wheeled him up to his room on the Children’s floor.  It took a bit of configuring, but we finagled spots for all four of us to sleep.  “Sleep” is of course a relative term in hospitals.  But Ben is of the age where Mommy is a necessity when you’re hurt or sick, and Finlay is of the age where Mommy is a necessity when you’re hungry.  And Daddy is a necessity because Mommy doesn’t have four arms.

Disclaimer* Hospital recliners are approved by fire codes but not by Serta.
Disclaimer* Hospital recliners are approved by fire codes but not by Serta.  Or by moms.

We had just discovered that the bag of clothes I had packed for Ben was still sitting on the sofa (2 and 1/2 hours away), when, by chance or divine intervention, a friend dropped in to visit.  She brought hot pizza.  God bless that woman.  She made the impending night seem less dark.  It was still a long one, though both boys slept through most of the nurses’ visits.  At five a.m., they came to take Ben down for another CT scan of his head.  When he came back freshly radiated, the baby woke and it was time to start the our day.

Good morning, sunshine.
Good morning, sunshine.

I went to the hospital for my son’s brain surgery, but I didn’t know it was I who’d be getting a facelift.  As we looked out at the cold dawning day over the rooftops, Psalm 121 drifted though my foggy head.  In more lucid moments, I whispered the words.  I lift up my eyes to the hills– from whence comes my help?  My help comes from the Lord, Who made heaven and earth.  I could only see the tops of buildings from our vantage point, but I decided not to interpret “hills” too literally.   

He will not allow your foot to be moved; He who keeps you will not slumber.  Behold, He who keeps Israel will neither slumber nor sleep.  Even in those dark hours, He kept vigil beside the IV pump.  I felt comforted knowing He was attentive though my incoherent hours.
My two year old gazed across the rooftops with me.  “Birds!” He whispered, enraptured.  I saw a seagull glide over the spires around us.  Snow reflected the first golden rays of the sun off the shingles.  The Lord is your keeper, the Lord is your shade at your right hand.  The sun shall not strike you by day, nor the moon by night.  I snuggled him close in the alcove by the window.  The sterile world around us faded from my thoughts.  For a moment, anyway.

The Lord shall preserve you from all evil; He shall preserve your soul.  The Lord shall preserve your going out and your coming in, from this time forth, and even forevermore.  I looked up, across the roofs at the pure cold dawn.  I breathed out thanks and breathed in renewal.

We stumbled though cardboard-like pancakes and sugar-flavored maple syrup and eventually got the OK to go home.  It was good to be back in our less-antiseptic but well-used house full of brothers and leftover Christmas decorations.

Yesterday, before I managed to post this, Ben woke from his after lunch nap with a fever.  As it continued to climb, I got worried.  After a long round of phone tag with the pediatrician and neurosurgeon, I figured I’d better take him into the emergency room.

My only experience with the ER previously was nearly three years ago, when Ben was two weeks old.  Spinal fluid started dripping out of the incision on his back (from surgery at birth to close the bubble that contained his spinal cord).  That visit resulted in surgery to get his shunt installed to manage the overload of cerebral spinal fluid.

But again, I braved the crowds of feverish infants, delirious diabetics who hadn’t eaten that day and suddenly found themselves cranky, and loud-mannered teenagers complaining of nausea.  I had to check my pocketknife at the door.  Ben sat silent, white, thin-lipped, and hot, on my lap for three hours before they got us in to see a doctor.  He ordered rounds of tests to rule  out reasons for infection, and spent a good deal of time consulting with neurosurgeons both at the local hospital and the southern group who had just revised his shunt.  We paced the cubicle.  Grandma put the older boys to bed so Daddy could bring the baby to nurse.  No one seemed to know what to do.  We left around midnight.

This morning, we spent more hours talking to nurses around the state.  They finally convinced us to come down to see the neurosurgeon who had done Ben’s brain surgery on Friday.  We scrambled, throwing clothes and toiletries into bags, not knowing if the doctors would keep us there, or for how long.  Josh ran the older boys to Grandma’s again.  I sprinted to the grocery store with the youngest; I was overdue to go, the fridge felt bare.  We trucked down the highway.

Finally, after a long wait, the doctor poked his head in the door of the cubicle we were starting to call home.  “He’s fine.”  The surgeon announced.  “High fevers mean it’s viral.  Nothing to do with the shunt.  You can go home.  It’s OK.”

So we did.

I am glad to be home tonight.  I hear fireworks in the distance, marking the end of the year.  The Lord has preserved our going in and coming out.  Tote bags are scattered around the house, laundry is piling, toys rule the corners of the living room, my kids haven’t eaten enough veggies in the past week.  I will probably step on a lego tonight.  Or a pretzel.  Maybe simultaneously.

But we have been preserved.

From this time forth, even forevermore.

God Bless Us, Every One

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“And how did little Tim behave?” asked Mrs. Cratchit, when she had rallied Bob on his credulity and Bob had hugged his daughter to his heart’s content.

As good as gold,” said Bob, “and better.  Somehow he gets thoughtful sitting by himself so much, and thinks the strangest things you ever heard.  He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk and blind men see.

from The Christmas Carol, by Charles Dickens. 

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I sat by the computer Sunday as the first snowstorm covered my little world, and read an update from a missionary friend in faraway hot India.  Friends had just asked her help with a three day old baby in a nearby village.  He was born without lower arms or lower legs.  He is the fifth child in the family and they aren’t sure they will keep him.

My emotions swirled like the snow outside the window.  My older children played busily around me as I nursed the baby.  The two year old drove matchbox cars over my shoulder.  The house was a mess, true, but air warmed by the wood stove carried the scent of roasting chicken.  My husband was at work, but he would be home to say goodnight after earning his paycheck.  Coats and mittens dripped steamily by the fire, adding moisture to the air and giving reason for the rosy cheeks bent over Legos nearby.  Christmas cards and a list of cookies to bake were scattered across the table among flash cards.

That old adage tapped gently at my memory, “I felt sorry that I had no shoes, until I met a man who had no feet.”  We have our struggles, but the road even my young son must walk so falteringly in his braces is easy compared to the uphill battle that little infant almost-orphan on the other side of the world will face.

And I asked Him, not for the first time, or even the hundredth, “Why?”

Why would You have this baby be born in a third world country?”

Why to parents who might not keep him?”

Why would You make him be born like this at all?”

Why would You make a baby born to be ridiculed, rejected, misunderstood… Why would you make a baby born to hurt or even born to die?”

The baby on my own lap stirred and snuggled deeper.  The two year old  next to me picked up one of his feelingless feet with both hands to move it away from the baby’s head.  He reached over and silently patted his little brother’s ear.   A tear sprang to my eye at a sudden realization.  It was love.

That Love had already sent a Baby born to die.  He’d sent His only Son, His beloved, perfect Son, to a stark, cold, heartless world to have a body broken.  He’d given him a body born to bear the full brunt of the ravages of sin.  This one, this Lamb slain from the foundations of the world, was born to show his Father’s love to sin-damaged humanity.  Nails sliced through his own arms and legs, forcing his body hard against the rough cross.  And Love held him there.

Will this little baby boy, born so far from me but for whom I ache, know that he bears in his own body the marks of the Lord Jesus Himself?  Will he learn that someday he can be given a new body, hale and whole, to run and clap and dance, for all eternity long?  Will he boast that he is one of the few chosen to bear from birth the mark of his Savior?  Will he find the answer to his question, why?

I think about these babies often.  Physically crippled; is it so that their souls will be more whole?  Or mine?  Will I remember, on Christmas Day, WHO made lame beggars walk and blind men see?  And will I trust that He will do it again someday?

Someday I, too, will understand why He would show His love by sending these Tiny Tims among us.  Like Mr. Dickens said, it’ll be as good as gold – and better.

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Driving in a Winter Wonderland

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  Two year old’s selfie

Just a quick update.  Surgery has been moved to the 27th of December.  After Christmas.  Though we had scrambled to prepare for surgery today, I am glad to wait a couple weeks.  Rushing into brain surgery was giving me a headache.

Before we had made plans for an operation, we had planned to go to the Spina Bifida clinic today to see all the specialist doctors who deal with the issues that Ben physically faces.  Since they postponed surgery, we were able to attend this fun-filled office visit as originally scheduled.  So we ended up going to the big city on this snowy day, and after driving for a few hours and finally getting there and unpacking the baby and 2 year old and wheelchair and diaper bags and finding out we had gone to the wrong building and repacking and driving down the road and repeating the process with protesting back seat drivers, we eventually saw lots of people in white coats.  It was a long day trading two year old for baby from my lap to Daddy’s in a small exam room for hours.  Hours.  But we survived.

Trying out big brother's wheelchair while waiting for doctors to drop in… It's legit; really, the four month old can't walk either!
Trying out big brother’s wheelchair while waiting for doctors to drop in… (It’s legit; really, the four month old doesn’t know how to walk either!)

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After a long time at the doctors’ office, and a shorter visit at the hospital where we met a new beautiful baby recently born with Spina Bifida (and where we’ll stay ourselves in a couple weeks for Ben’s surgery), we had some well-deserved mac and cheese at a restaurant.  Then we changed diapers in the car and drove out of the twinkly snow-kissed lights of the city.  We are home now.  Days like this sure do make our little house feel pretty appealing.  We’ll keep you posted.

 

"Why is Santa's deer sticking his head in the wall?"
“Why is Santa’s deer sticking his head in the wall?”

 

Oh Shunt.

Today I went to Walmart three weeks before Christmas with my five children and a wheelchair.  It was a little bit tough.  Then, for perspective, I set up brain surgery for my two year old son.  For next week.  That was a little bit tougher.

This is shaping up to be one humdinger of a December.

Ever have those days when you really need good chocolate and all you have is a twice-melted cheap bar from Halloween?  From last year?  This month might be one of those days for me.

A diagnosis needing brain surgery doesn’t really surprise me.  It’s par for the course with a kid born with Spina Bifida, unfortunately.  Because their spinal column never fused closed in the early weeks of gestation, the spinal cord didn’t form in the right way and spinal fluid doesn’t stay in a closed system and can build up at the top or bottom.  Ben had a shunt put in about two weeks after he was born.  This tube diverts the excess fluid from putting pressure on his brain, and it can last for years with no problem.  But if the shunt stops working, and the neurosurgeon thinks it has, then the brain can be damaged.  We don’t want that.  So, brain surgery Tuesday.  A new shunt.  Yay.

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seriously?

In my more positive moments, there are good aspects.  For one thing, I’m a retail widow from November to the new year.  Few things can pull my husband away from managing the store during the busiest season of the year.  But brain surgery is one of those.  So, we’ll have some “quality” time together.  Also, it does make a lot of the frivolous parts of Christmas seem, well, frivolous.  “What, you didn’t make a tree skirt from scratch this year or crochet everyone a new stocking?!?”  “Yeah, I was too busy caring for my son during his brain surgery.”  Nobody argues with you.  And to top it all off, he needed a haircut anyway.

But in the darker, starker times, it is a little scary.  It is, after all, brain surgery.  A man I’ve spoken to twice in my life is going to get intimately familiar with the deep recesses of my precious son’s brain, an organ he admits we still don’t know much about.  And I’m supposed to let him.  The first time Ben got a shunt was one of the lowest points of my life.  It was emergency surgery.  I remember the terrible anguished cry my baby made when he woke up from sedation afterward.  It still makes me well up with tears.  My husband got so sick the night we went to the ER with the baby that as soon as I got home from the hospital with my convalescing infant, I turned around and took my husband to the ER for dehydration.  It was a tough moment in history.  And you know how history has a tendency to repeat itself.

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It’s not making Christmas easier.  I have shopping to do, gifts to make, cookies to bake, a house to make pinteresting (snort.)  I have homeschooling and mostly-single-parenting to soldier through until after the holidays calm down.  This is not all twinkly lights and mistletoe and breathy caroling.

But Christmas wasn’t designed to be easy.  It was designed to be significant.

God came down to Earth to an unwed teenage mother.  He didn’t have health insurance or food stamps.  He had a foster dad.  The stable wasn’t warm or smelling of cinnamon and pine needles.  It wasn’t sanitary; nobody washed their hands to cut his cord.  Blood stained the dirt floor.  Mary groaned, Baby squalled, Joseph probably freaked out and sheep nonchalantly did their business in the middle of the floor.  He came in the midst of political turmoil and governmental corruption.  He came to be hungry, dirty, and cold.  He came to be hurt, to be snubbed, to be misunderstood.

He came to be Immanuel.  God with us.

When Gabriel came to tell Mary to take a pregnancy test, he said, and I paraphrase, “Congratulations.  You are blessed among all women with a surprise pregnancy… Don’t be afraid.”

This blessing, this Christmas present for Mary, was going to be tough.  Super tough.  A blessing in the raw.  A gift with hard, sharp edges and no crinkly paper or soft bows.

But all she said was, “Ok.  This doesn’t make sense, but I’ll assume You’ve got this, Lord.  So we’re good.”

And He did, and the rest is history.  (Well, it’s also present and future, since that Baby is still alive and the part where He’s king forever hasn’t happened because forever takes a long time.)

Living these historic moments of my life is not easy.  They are raw and real.  They are on a whole different level than fun with gingerbread and sprinkles which I’ll have to vacuum into oblivion the next day anyway.  But these moments are necessary.  These moments are significant.

I guess Mary has the right idea.  “Ok, I don’t really get it, but I’ll assume you’ve got this God.  So we’re good.”

And having a husband who comes home with a box of fresh chocolates after his wife’s had a long December day isn’t a bad deal either.

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We appreciate your prayers.