Category Archives: Spina Bifida

Testing, 1…2…3…

Red sky in the morning, sailors take warning;

Red sky at night, sailors’ delight.

It’s handy to be able to tell the weather by the horizon at dawn.  But I woke up to a pink sky on Wednesday morning.  “What does that mean?” I wondered.  Is pink half-warning?  Is there going to be a half-storm today?  Is this metaphorical?  Am I thinking too much before my first cup of coffee?

That was likely, so I remedied it, pouring a steaming mug and turning on auto pilot to get the morning going amidst the hubbub that is life with five boys under seven (and a husband.)  But it was an antsy kind of day, nonetheless.

I spent the day waiting impatiently for a neurosurgeon to call.  Don’t you just hate that kind of day, waiting for the neurosurgeon to call?  I do.  And it’s really not better when you don’t hear from him.  I’d been compiling a mental list of growth changes in my two year old, and I was more than a little anxious to run them by a professional for his opinion.

My two year old, Ben, is the one with Spina Bifida; the one whose nerves formed abnormally in his lower back before I even knew I was pregnant with him.  The lower ones that usually grow into the legs grew in a sort of bubble on his lower back instead.  And since his spinal cord didn’t really close at the bottom, it affects his whole spine, right up into his head.  Even the best doctors can’t fix nerves.  At best, they can protect what he does have.  So he had back surgery to close that bubble and head surgery to put a little tube in (called a shunt) that would divert excess fluid from putting pressure on his brain.  But since those back and brain surgeries following his birth, his medical story has been fairly quiet to date.  He can’t really feel his legs, but otherwise is a pretty normal two year old who just happens to have a walker and leg braces and a cute little wheelchair that can do a number on your shins if you’re not watching out.  I’d gotten used to our mostly-un-doctored life.  But sort of all at once, a handful of little niggling worries fit together to make me think emergency brain surgery was looming in his future.

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I managed to work myself into a bit of a tizzy  during the week worried something was wrong.  A restless concern ate at my natural calm, and I’m always naturally calm (ahem, insert sarcasm if you don’t know me by now.)  Of course I don’t want to rush my child into brain surgery, but neither do I want to wait if his brain is being damaged as I sit on my hands.  There are often clear, dramatic reasons for brain surgery, but it’s not always obvious, especially if it’s a gradual change.  His neurosurgeon once told me that he’d consider operating based on a mother’s intuition that something was wrong.

Ack.  No pressure, mother.  My intuition wants to tell me that every stranger is a bad guy, and that it’s a good idea to eat chocolate for breakfast.  I wouldn’t trust my intuition.  So I was on pins and needles throughout the week, wondering if I was doing him a disservice by not rushing to the emergency room to get checked out.

I’m rather dense, you see.  I tend to think I’m supposed to handle life.  I’ve got five boys under seven.  I homeschool.  I have a tight budget and a small house.  My husband is working under intense pressure at his job this year.  You might think I’d be better at realizing my insufficiency.  No.  It takes the mention of brain surgery for God to nudge my complacency out of the way.  But then, God has been known to use talking donkeys and man-swallowing whales to get the attention of someone He wants to talk to.  Brain surgery is small potatoes to the One who personally hard-wired every brain in history.

It wasn’t until Friday that I got a call from the neurosurgeon’s secretary.  She casually mentioned that the CT scan of Ben’s head showed negligible change in the amount of fluid; it was probably nothing, but if I really did want to see the doctor, she’d try to fit me in a couple weeks later.

It wasn’t what I wanted to hear.  I wanted answers.  I wanted to know that I had to either prep my own mommy heart for my son’s surgery or tell it not to bookmark every little symptom if it’s just his own natural way of growing.  But I got neither.  I’m in limbo between the storm and the sunshine.  There is no discerning what lies ahead.

The cell phone dangled limply in my hand after I hung up with the secretary.  The older boys were playing soldiers in the living room.  Ben pulled himself over to me on the kitchen linoleum.  I looked down at him.  An orange plastic gun barrel was pointed at my knee cap.  “Ka-chew!”  he exploded enthusiastically, the weapon jumping back in his chubby hands from the imaginary blast.  Then he looked up at me with a twinkle in his eye and quoted obediently, “Don’t shoot yo mudder!”

I scooped him up and dumped him affectionately in a pile of pillows that served as a bunker for the soldiers in their living room fortress.  “Think they can surgically remove some disobedience if they have to get in there?” I asked him, tapping his blonde head.  He ignored me and pointed his weapon at the invading hordes in the stairway.

How could I ever think I am in control anyway?  I wondered at my audacity.  God made these boys, designed them, right down to the placement of each nerve, and continues to keep their heart beating, their neurons firing, and their minds thinking.  I can’t see what’s going on in their little bodies.  This place of waiting is only Purgatory if I treat it that way.

Perhaps, instead, it is a place to rest.  Perhaps it is a time of preparation before the storm.  Perhaps it is simply a time to teach me to be quiet and learn to listen for the calming Voice that wants my attention.  Amidst the clamor in my head, I tend to ignore His whispers.  And I miss Him.  Oh, how I miss Him.

Ok, Lord, I’m listening.