sliced

I have often wondered what goes on in the head of an adolescent male.  I had the distinct privilege of being one four girls in a previously all boys boarding school.  Now fully coed and well functioning, when five of us entered in 4th form (10th grade), I can tell you that the boys were no more certain of us than we were of them.  I don't think the teachers were any more confident.

When I had a fourth son, I joked that God must be trying to get me to figure out something about the male brain.

Yet, after intense study and chronic inundation I have few clues.

That's kind of what it is like looking at this slice of Houlder's most recent MRI.  Unclear.

In short, the pituitary tumor that the lovely MCV technician informed us about does not in fact exist.  Houlder apparently has preternaturally large pituitary glands.  To fit the rest of his body I imagine.

So, yipee!  No tumor.

The neuro-surgeon was nice.  She explained what she saw that led her to think he may have a growth.  She answered all questions pertaining to any growth or her reasoning.  However, she was explicit in what she would not answer.  I admired how she was able to define the parameters of her job and stick with only what she was able to offer services, "If I cannot cut it out, I don't treat it."  Okay, good to know.

Kind of wish the docs had lunch together and maybe shared thoughts.  Houlder and I keep trudging to these appointments and these super smart docs sort of pass the ball to the next player without knowing if s/he is open for a pass.  It is tricky.  Each one asks great questions and tries to uncover details.  But, culling it all together is just his mother who dropped chemistry my second semester of high school because I had enough science credits to graduate, took two languages, and was horrible chemistry student.

This neuro-surgeon did offer us the copies of the recent MRI and noticed he had more lesions than in the first one.  She however recommended we speak with a pediatric neurologist about what they could mean.  I wish I could define my job so well.  Ditto to question about migraine.  Suggested that his symptoms did not match but that she was not qualified to answer.  Okay, but she slice open my kid's brain.  I ma thinking that she is a bit more qualified than a chemistry drop out.

Weird, though, the lesion I mentioned in an early blog that might suggest something else, may have sprouted some buds.  These lesions could be the cause of the headache, blurred vision, dizziness, and exhaustion.  Will post more when I learn more.  At least she was willing to comment on these.  I am grateful.  She was nice and frankly I am relieved for Houlder to not have a tumor.

Houlder had his first acupuncture tonight and he was happy when he met me in the waiting room.  Unfortunately still has headache but maybe tomorrow we will have some relief.

Off to schedule more appointments.

The kid is suitably good.  He is having the spa treatments I dream about: massages, chiropractic adjustments and one of my favs, acupuncture with Keith. 

I see the white dots she pointed out.  Thirty odd years later and so much time with male minds, I still cannot tell diddly about the white spots.  Guess I will learn, at some point.


PS -- Frazer's MRI is April 6th, then more testing on April 15th.  This is for his potential pituitary tumor.  If I could just figure out that damn make brain, maybe I could fix up these sweet boys.  Heart catheterization will be after we deal with the results of those.  

Do you know the star chamber is a torture chamber?

My mother asked me this question when she visited last week.  She's a bit horrified that is what we call our basement classroom.

In August 2009, team Hudgins embarked on a quick frenzy to turn the basement laundry area into a classroom.  A place dedicated to books and supplies and all thing Frazer.  Having homeschooled Dell, I had felt distracted having his books strewn all around the house, and I wanted at least the supplies centralized.

Porter oversaw the drywalling and helped build shelves with William.  Some painted using all the remaining buckets of paint from every previous painting project in the 13 preceding years.  I shopped for supplies which I enjoyed like buying a new lunch box had been back in the 70's.

I came home one day to learn that Frazer and Will had dubbed the classroom the star chamber.  Not being a history buff, no immediate meaning came to mind.  Frazer had been watching Harry Potter's Chamber of Secrets and he was the star student.  I did not question anything other than that link.

So, I thought the star chamber fit.  An aptly named classroom.  I perhaps should have been wary when my older boys were amused, but I had seating to figure out and had to labor over the different ways to teach math.

Frazer and I embarked on our journey prepared for a Lewis and Clark adventure but behaving more like a Martin and Lewis caricature.  As any good explorer does, I was there to document and assess the process and progress.  Thus the blog, thestarchamberexperience.

As the first month progressed I became aware my inability to write about everything.  I started feeling as if Frazer was under a microscope; it was harder and harder to find strength in my observation or him.  A weekend away blew up my ability to document and thus I launched into an erratic but more pleasurable experience of blogging.

As the year wore on, friends in the homeschooling community would wow me with their photos on their blogs.  I piddled with a means of treating the blog less like a future diagram to how to teach a dyslexic to read and more like Travels with Charley.  Like Jill Krementz, I leaned heavier on the photos and less concerned about the overarching message.

In the car Frazer and I listened to Jim Weiss read Susan Wise Bauer's Story of the World CD's.  And as we learned about England, I learned that the star chamber had some dicier connotations as better articulated here:  http://harpers.org/archive/2007/04/horton-nyu-speech.  But torture and secrecy were not the reasons Frazer and I hung in the basement.

However, in the spirit of full disclosure, I have felt as if some of the greatest knowledge I have gained or acquired involved a measure of brain sweat equity.  Epithets abound such as "No pain, no gain" and "Feel the burn."  Does learning occur in blissful ignorance or is it in the grappling of what we know and where we want to go that learning is active?  In that zone, is there is a kind of torture in learning?  And, is it usually a secret to everyone --even the learner?  What will be the trigger when learning goes from organic and blissful to a more deliberate and overtly cognitive process?  When each person hits this zone of proximal development (Vygotsky) varies and is not entirely predictable how long a child or adult will struggle in this zone.  http://www.learnnc.org/lp/pages/5075  I kind of knew that active learning was just that-- it demanded participation from the learner.

In some ways our classroom was a star chamber.  A court room doling out punishments.  For me.  I had loved classroom teaching when I taught.  I loved the exchanges, the kids' ideas, the joy, and even the sardonic.  Best of all, I enjoyed the kids riffing ideas with each other.  So, this homeschooling gig of mano-a-mano has been my proximal zone.  I have looked for scaffolding from friends and their kids and even Frazer.  I knew last fall I was truly learning because I struggled so much.  The tutorial classroom that Frazer was thriving in was personally my learning zone -- my star chamber, my torture.

Torture came in the form of shame for not being facile in this intimate setting.  In listening to myself speak instead of him.  Everything I believed about learning and education was being challenged.  Yet I was determined to fulfill my promise to him which was to teach him in the way he learned best.  I was becoming amazingly aware that old school techniques of direct instruction and listening were his strength.  He mucked through the mire everyday as he worked through his ability to decode language and read.  Who was I to be bummed that we were not some experiential learning oasis?

Frazer struggled gallantly and joyfully if not dutifully through so much of his learning on a daily basis.  He was used to being deliberate and purposeful.  He knew he needed just me.  He knew he was in his zone -- in his chamber -- and learning was occurring.

As usual, his mother knew last.

So, I have learned that Houlder and Dell are better natural students of history.  It has been reinforced yet again that William has a wry sense of humor or genius to dub the room the star chamber.  And now the blog has become a repository of musings, photos, health updates.

These health updates are the current craze of challenges we face.  Daunting, exhausting and persisting Houlder suffers mightily, Frazer goes merrily along and Will and I feel racked.  Our life has become a star chamber.  The arbiters of our family's health have hopefully spent some time in a star chamber, struggling to know what they have not known before, and managing to get out alive with compassion in hand.

So "Yes, mother, I know what the star chamber is."

Prank Call

In the days of rotary phones, it took at least 20-30 seconds to dial a phone number.  Piddling, some friends made prank calls one night.  There was an immature thrill as a teenager in dialing random phone numbers from the phone book and either hanging up or making a dumb joke.   But, my admission holds equal parts shame and and humor.  In days before caller id or even star 69, I worried about scaring people.  Sadly, that is the humor for me.  Skipping the light fandango held such Romantic appeal but something as annoyingly harmless as making prank calls drew out enough anxiety that I was more bystander than participant.  Fear of being caught was less compelling than what happened if the person we called actually had trouble.  I welcomed the busy signal when my turn came. 


Monday the phone rang and Houlder answered.  An MCV administrator was calling to tell him he had a MRI on Wednesday 3/23 and a doctor's appointment.  Could I call her back to confirm?  Sure.  How pleased we were to know our friend had some how moved mountains and had us an appointment and a new test and an appointment with a neurosurgeon. 


By Tuesday, we had another phone call which rendered me dizzy; a technician had called to schedule a visual field test for Houlder talking about the tumors in this optical field and pituitary.  Could we come at 2pm?


Um, yes.


Immediately my brain started rolling and my stomach turning.  His ophthamalogist had okayed him.  Was it be possible that Houlder on the huge end of the scale had the same problem that Frazer might on the other end of the scale?

Through numbness, I made calls out to the universe.  I sent out a plea to friends to take Frazer for the day which were lovingly answered.  I changed an acupuncture appointment we had waited three weeks for in hopes of relieving some of Houlder's pain.  I called my mother to let her know the changes as she was due to arrive when we would be gone.  I remembered I still had to pick up at Collegiate.  But, worst of all, I had to call William on the road.  I made sure that he was not driving and delivered the obtuse message that the visual field tester had shared, "Tumors."  I tried to explain to William that I had language issue and perhaps I had misunderstood.  Nothing like having to share with someone that he needed to clear his schedule on wanting information.


And, why not call the doctor?  Well our sweet friend had arranged all this and we had not even met the doctor.


So, on we traveled.


If felt like a prank call.  The world's karmic comeback.


On the way to MCV, I chattered ceaselessly grateful for the final two little pills which would help Houlder get into the MRI but slightly concerned that they might be more beneficial to me at that moment.  Armed with documentation of his health since last spring, tests results, CT, MRI we trudged into the office 30 minutes early and the technician came and greeted us.  Concierge service was new to us at MCV.  This sweet man got us, told us he would get us an appointment with the Neuro-ophthalmologist (which he did), and could move his MRI back so that we could do it all.  During it all he commented on Houlder's size and athleticism a how he need to get this tumors out and move on with his life and that usually it takes 6 months to see the doctor but he was going to take of us -- all because of our friend who had heard our concern about about Houlder not improving and in fact deteriorating.  Our friend -- a miracle worker.  This technician -- a champ delivering his news with a smile and actively working to make sure we got everything we needed.


Prank call?  Fact?  Fiction?  Surreal, yes.


We spent the afternoon doing what one does.  Houlder managed another MRI easily. 


The neuro-ophthalmalogist suggested that what the neuro-surgeon wants checked in the new MRI is not a tumor although he commented on three abnormalities.  In general, he felt Houlder was not a neurological case (happy or stunned) and thought that he may have the one condition that every other neurologist has said he does not have, a migraine -- even though he was missing 4 symptoms.  He explained the medication but told us to wait until after Monday's appointment.  He also explained that it was possible to have the same headache since January 4th -- intractable migraine. 

Mom, 67, Dell, 14, Frazer, 11 March 2011

We left wondering about one diagnosis without all symptoms and how three abnormalities don't mean anything: do abnormalities start somewhere?  are these the first ones?  could it be this simple and this many intelligent people have been wrong?


Today is Friday.  We managed Thursday which was Dell's 14th birthday.  My mother got to see Picasso yesterday.  Houlder napped.  Dell got his World Cup soccer ball and Inter Milan away jersey making him smile.  Frazer finally had two hours of education and Porter reveled in being six.  After dinner at CanCan and birthday ice cream at Bev's exhaustion overcame me.  


We wait.  William and I contemplate a plan.  Our greatest concern is that if it is not neurological, then what.  We feel immense gratitude to our friend who has arranged all this so quickly.  We worry.  Clearly.  Who can surrender to the universe kind of crap through this?

Houlder remains even and confident.  He is his father's child.  Me, I lie in bed worrying about karmic retribution.  Prank calls and where do we go to find answers. 

The act of bell ringing is symbolic of all proselytizing religions. It implies the pointless interference with the quiet of other people.
Ezra Pound

Houlder and Dell playing Risk March 2011

 

 

Being strategic is not my natural strength.  Unlike my sweet calculating son who has spent hours amusing himself trying to best himself in chess, stratego and risk, I am a fly the seat of my pants player.  Hoping that some synapses somewhere kick in and save me from too much shame.  Fortunately the games engage me but not like the mathematical equation Dostoevsky's poor student contemplates.  More like Forest Gump.  Dude I am hanging on for dear life most moments.

So, having Houlder play Risk with Dell was an immense risk for my fortitude and a singular glorification of all that is good about Houlder.  Ordinarily it would be a heated game, with Dell perhaps winning not because he outsmarts but he connives and Houlder does not tolerate the constant rule changing and walks away from the, um, tantrum of my lovable sweet second child.

But yesterday, Houlder rose from his bed as his buddies Max and Jack visited.  Not sure if it was the sugar loading of divine brownies or Rita's Italian Ice but Houlder got his groove on for about an hour which is an hour more than we had seen in a few weeks.

Risk.  Really?

I pulled Dell into the kitchen to give him the pre-game chatter -- "Go easy.  He cannot remember squat.  Don't be a bugger and cheat."  Pure mother's pride spewing from my mouth.  Everything to be proud of -- the cheater and the feeble.  But who was who?

Much to Dell's chagrin and Houlder's delight, I told Houlder to take photos of his moves on the camera so that he could document the game should anything be called into question.  Dude, I spy a lie walking by...

So, is a mom proud or in denial?  Really, I recommended self-preservation of one for the demise of the other.  Sick soul am I.

What kind of freak recommends documentation for a simple board game?

What does this mother say when trickster child comes into kitchen for a drink to say, "Man, mom I am not even bringing my c game and I am killing him."  Good honey, keep winning?  Slow down honey.  Bring your failing game.

You see, I am not inherently a risk taker.  Yes I have four kids.  Some people have defined that as insanity and thereby a huge risk.  It is not.  For me, loving them, while some times sleep deprived and slightly grumpy from lack of consistent time for myself, loving them has been enough.  No, it does not pay the bills.  No, they don't clean up crap and neither do I.  Yes they annoy the bejesus out of me.  But, truly, loving them and William is the easiest and safest thing I have ever done.

But, really, Risk.

Nah.  I don't like horror flicks.  I like a good joke and raunchy is okay but there is a place that untoward jokes go that I cannot bear to go.  I love to laugh and am often inappropriate but there is this invisble line that when crossed everyone knows I am not going there.

Risk.  Really?

So, we don't have enough danger at the ready right now?

I feel as if every conversation with a medical practioner is a time to strap on some armor.  No one has been mean but dismissive is disheartening.  Ideas of diagnoses float freely, and I am not supposed to wiggy-out.  My kid has taken a medical leave from school, and I should continue like he is home for the weekend.  Of course no one is behaving badly, but I am depleted and frustrated and feel as if every word I document is a word that may or may not make the difference.  I am a day behind on his notes, but I am almost too full or too spent to figure out how to be unemotional and detached and report just the facts, please.

Because fools who have four kids are not looking at the facts people.  They act on impulse or just stupid as my father-in-law might argue.  Maybe that is the risk -- the lack of calculation we had in planning our lives.  The belief that serendipity and effort could form a family.  It has.  I am not obtuse or anything -- well not all the time at least.  But, dag-gone. 

Risk. 

And yes, the camera was used. 

As I lurked in the kitchen hoovering ultimately Houlder's fatigue and Dell's grace swooped in to save me from enduring another photo replay.  They decided to walk away until later.  Houlder just could not think.  How pathetic!  How kind! 

Risk.  This is it.  Do I leave the game out or get into a cleaning frenzy? 

Risk. Who will I alienate more?

Because really that is the line we dance around as parents.  How can we love them so desperately and yet nudge and encourage them in others?  I have no solution.  No plan.  I am sometimes amazed at the thoughts that cross my frontal lobes and grateful that I am not speedy speaker or shame would loom all around me.  I like to dance to my music in my way.  Loved those deadheads doing their own moves to the tune that they heard.  A few years back one of the greatest babysitters in the world, took a week off to go to Bonnaroo.  When she told us about the concert, I knew we had traveled to the land of "older."  No longer hip.  Not able to relate.  And who were those bands?  When she came back she told us about a venue she went into in which everyone wore his or her own headphone and danced to his or her own music.  At first I thought bizarro.  But, really, it is a deadhead dance in this century.  Everyone catching his or her own rhythm.  Everyone trying to find his or her own beat.

That's the risk.  Finding our own new beat.  I have never been to a Dead show depsite having a step brother who followed them and many friends who avowed their greatness.  But it was the beat, the dance, the beary little groove that always appealled to me.  Kind of like headphones at party where everyone finds a score.

Our risk.  To find the score.  The answer.  To man up and calculate the game and bring on the first string team to figure out what ails us.  There is our risk. 

Game on.

I still cleaned up the game.

The Space Between

The Space Between
What's wrong and right
Is where you'll find me hiding, waiting for you
The Space Between
Your heart and mine
Is the space we'll fill with time
The Space Between...                        Dave Matthews Band 

Parenting fills the space between.  The love we feel.  The time between when we first know they exist, to holding them and ultimately releasing them to the universe.  Often the times are equally besotted with joy and angst.  Every day life fills voids that sustain us.

2011 unwrinkles time.

January uncovered Frazer's ASD heart issue and pericariditis.   Lying in the periphery was Houlder perpetually tired, chronically riddled by a headache, and disoriented by blurred vision affronting our assumptions of youth prevailing and enduring because it mostly does.

Barely able to make state swim champs for Collegiate, he had to decline participation in A/BB Champs and Senior Champs that he earned through months of training; a year's worth of goals faded away under the crushing headache which had persisted since January 4th.  Before February's end, Houlder was no longer able to go to school, study, manage anything other than sleeping or eating.  

Concurrently, the endocrinologist suggested that Frazer may have a tumor on his pituitary gland.  In the space of the briefest month of the year, kids floated without medical diagnosis and pending heart catheteterization.  Waiting 6 weeks for an MRI with proclaimed excellent health care we wonder if a sweet child has a tumor that needs removal which if he does, could be complicated.  

Suffering no outward signs, Frazer remains the same.  If there is tumor, we already see the evidence -- he is short.  He is 11 years old and weighs 50lbs and is only 48 inches.  His 6 year old brother slightly outweighs him and matches his height.  There is no space between them besides the nearly 5 years separating them.

By March and spring break, Houlder  managed 2.5 good days where the pain was only a 4 and he got to see Picasso's exhibit at the VMFA.  Delighted as he was by the magnitude of Picasso's work, he was exhausted by the end of the hour and a half.  It was his last pleasurable time out of the house.

Test results are unclear.  The internet is not a friend in these darker late night moments of questing to understand something that may or may not be detectable.  Where we go next and what we uncover remain unknown.  Skills as a chronicler have never been so critical, but fear creeps in.  The minutiae of details like blood pressure, temperature, what they eat almost defy documentation.  Miss a detail -- of course.  Forget something?  Inevitably.   The space exists between what has happened and what needs to happen.

Where does the time go?  Can I hold it in my heart and make it safe and still?

What happens in those spaces that we hold for our children whom we love and want to protect?

We manage a semblance of life that resembles our previous unknowing.  William and I wait and wonder and worry and love.  That is all there is.  The time to hold and to love, and the space that it occupies in our minds and our souls are neither trivial or magnificent.  The everyday-ness of it all allows us to suspend the time between appointments or answers.  


When we held our boys in our arms for the first time and adored them, we marked a time in which there was schism in our lives -- the time before parenting and the time as a parent.  The space between then and now extends our ability to support them and remain curious about what it could be and what we have yet to learn.  It is the love we share for them and in that is the space for hope.



http://www.youtube.com/watch?v=H67uEgRZs2Y