Thursday, June 30, 2011

Unless You Become As a Child...

Part of my personal interest in adopting Bethany came from time spent overseas working in what basically amounted to orphanages. No one likes the term orphanage so they clean the name up and give the kids a type of permanence and dignity they deserve but have been so remiss in receiving.  They go by names like "home, foundation, shelter, and institute".

The Prince of Peace Foundation in Ecuador was my introduction to the reality of such a place. It’s place for kids to escape the grip of abuse, neglect, drugs, cultural indifferences, overpopulation, and a host of other situational malignancies. While the goal of these places is to “reunite the child and the family”, the reality of that seemed slim.  These were beautiful children who wanted desperately to matter, to be loved and to have some degree of predictability in their lives but so many things were working against that goal.  Big, things that aren't easily changed in short bursts of time.

One boy had been abused by his father, another - from a large family, sent out to beg at the airport, a girl of 5 had spent most of her life living in the pig shed next to the family shack. None of these kids were looking for pity, they weren't in search of charity, they just wanted to be kids - to matter in someone's life, to be safe and most importantly, to be remembered. The older boys would slide up next to you and ask in broken English what your shoe size was, and then during the week they'd see I'd you'd be willing to give them away when you left.  Another little boy wanted to see my home in “el norte” so I showed him a picture of my house in Michigan.  He was amazed – it seems he thought the garage, with its cupola and weathervane was actually a church.  “How many families live there”? he asked… One girl wanted my Bible - "hablas englais"? I asked her, she responded "no". In Spanish I told her that my Bible was in English. She quickly explained that she'd learn English if that's what it took.

To this day, I use a bilingual Bible for everything - just in case. Lesson learned.

Once the director of the home realized I could drive a stick shift, I was pressed into service as her designated driver for the week. Add to that a basic ability to communicate in Spanish and you have a new type of migrant laborer. "PiƱata blanco" was what I was as a driver on the roads of Guayaquil; a big, white target driving an ancient, dilapidated truck, loaded with kids, cargo, and director named Ana, who took her direction from Jesus and her grit from the Apostle Paul.

One evening, late, after midnight - Ana came pounding on the door of the room that 6 of us were sleeping in. I happily answered the door even if only as a way of escaping the noxious odor of over flown toilets, sweat, filthy clothes, and snoring. Ana clearly instructed me in Spanish of the importance of the task she had in mind. I had no idea of the task, the importance nor why she was even at the door at this hour.

My brain has to switch between thinking in Spanish and thinking in English and the exchange rate between the two is not an even wash. In fact, I thought she was asking me to wash the truck, which was really odd given that it was the dry season and water was at a premium. It turns out she wanted me to get the truck and bring it to the front office. One of the children had not returned from the city that evening and she felt lead by the Lord to go looking for him. Actually, she felt lead by the Lord to go have me go look for him.

Driving an old truck with one functioning headlight down a 22km, washed out road in the middle of the night, looking for a young boy in a city of two million... My kind of adventure!

There was a nice government controlled road that circumvented the boneshaker, washed out road.  It was easier on the cargo, easier on what was left of the truck, and easier on my nerves. It also had a guard-shack with a little dog and a grouchy man with a sawed-off shotgun. I'd come to meet him the day before, when he leveled the gun barrel through the truck window at me and told me I was not permitted on this road.

That's all I clearly remember - other than the stern voice of the director, Ana, arguing fervently with the man that we had permission from "Senior So-and-so" to use this road. The two were screaming at each other and the only things budging in the discussion were his shotgun and my bowels. As he waved the gun in my face I tried to croak out that it was no big deal, we could go around on the washed out road.  I have no idea what actually spilled out of my lips but it must have been amusing as the debate roared on in spite of me.

Taking the washed out route on this night seemed preferable; given the vague assignment and the addition of two young boys who were sent along to help guide me in my search; it was surreal enough without the possible drama of me adding insult to injury by driving past the guard again. He'd lost the argument with Ana and I had no intention of entertaining a rematch.

We searched the back roads for an hour or so and then decided to wait at a crossroads where the children usually gather to ride on the back of the trucks coming from the limestone quarry, past the foundation.  We waited another hour in the cool of the night. Pitch black surrounding us, the truck engine, now long cooled and silent, sleeping in the same manner as were the two young boys next to me.  One asleep on my shoulder, the other, asleep on his.

By 3am it became apparent that I'd failed on my special mission. I never saw that boy again, never heard what happened to him, never found out why he failed to return. Softly shifting the truck into gear and then shifting the lump of boys off my numb, soggy shoulder, I started the engine, recited the "truck prayer" that Ana insisted must be done at each corner of the vehicle to ensure safe travel (angel bumpers I called them), and flipped on the one, yellowed light for the bumpy ride home.

That trip opened my eyes to the beauty of children globally. It opened my eyes to the intensity of righteous anger, the joy of giving, the beauty of simplicity, the wisdom of children. These same children would bless me again on a special trip in a few years during the month of September when the gift I brought to their school, a television, would reveal an early morning horror in New York City. Those wonderful children who had nothing material, held hands in a circle surrounding our stunned group and prayed out loud in Spanish for safety and protection on our families.

For me, this beauty was part of a calling. Part of a calling which would radically change my family, nearly destroy my marriage, and put me at the edge of an abyss that I can only hope never to see again.  Is it worth it, you may ask?  I may not answer you, but I welcome the question. I think of Bethany, I think of the adoption process and my mind goes back to an impossible task on a dark road late at night, the sound of strange bugs and frogs, the warm night air and the sound of two little boys snoring lightly on my shoulder. For them and for me, family was at hand.

Tuesday, June 28, 2011

A Daily Dose of Bethany, Just what the Doctor Ordered...


Her knuckles were black this morning from last night’s beating.  Her head and cheek was the main subject of attention, although my heart caught most of the blows as well.

The day started with a calm, almost peaceful attitude and somewhere around mid-day all that hope evaporated like rainclouds in a desert.  I don’t know how much more of this I can open my heart to – fear only happens when you’re unsure of something, this is so nearly a certainty that I not only don’t fear; I’ve moved so far as to emotionally distance myself from it. 

How many days have I muttered this report, how many nights have I gone to sleep with a heavy heart and little hope for tomorrow?  Then, like the sun rising after a long, dark night – we have an evening with little conflict. 

I came home from work and found Bethany in the living room, clutched tightly in her hand was one of Sherry’s Polo shirts.  That little artifact stayed clutched for next 6 hours. Typically, I come home and wonder how long till the next meltdown but today was a bit different.  That little shirt was accompanied by a delightful squeal and the reproofing voice of our helper, trying to gently correct one of B’s favorite games; the “rip your diaper and toss it around the room” game.  Most parents get upset with this game but for me, hearing it accompanied by a happy laugh made it a totally different event. 

She laughed as she ripped the diapers, laughed as she wet the floor, laughed as she relieved herself in the bathtub.  She laughed.  I laughed too.  The weight of many stones was lifted from my chest, my step – lighter, my demeanor – more appealing.  The same God that I endlessly complain to heeded the power of combined prayer from an untold number of prayer warriors. As I put her in bed at the end of her day, she gave me a kiss on both cheeks and then gave me a good, hard, shove towards the door and bounced her head back on the pillow – erupting in a deep, satisfying laugh which continued long after I’d headed down the stairs.

That night, the evening sky was a more beautiful pink than I’ve seen in a long while, the smell of the cool air – a respite to my senses.  I thought about asking for another day just like this one, just for the benefit of her emotional state; and then I realized that this moment is to be savored.  Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them”.

It’s been a long, difficult six months for not only Bethany, but for the entire family of her friends.  I thank each one of you for joining us in this journey, for learning each painful lesson that we learn, and for continually holding Bethany in your thoughts and prayers.  The Lord continues to feed us daily and reminds us that “daily” is what this relationship is all about.

Friday, June 24, 2011

Seven Seconds of a Siezure


In a quiet moment, early in the morning – I hear a scream like none I’ve ever heard before coming from upstairs.  Unsure if it’s a dream or the reality of an early rising, I half-sit up in bed.  With Bethany, one scream is fluke, two a distinct pattern, and three means hell came early.

Waiting for a moment, I hear nothing but a strange creaking emanating from the electronic baby-monitor that we’ve positioned on the window ledge.  “What in the hell could that sound be”? I think through the haze of a partial nights’ sleep.  Suddenly the creaking, high-pitched moan and shifting of sheets is clearly heard through the cheap microphone.

Having your heart go from a resting rate of 50 beats-per-minute to that of a second period wrestler’s heart rate is a horrible sensation.  It’s horrible for a wrestler, even worse for the one who wrestles with a special needs child and beyond all imagination for one who is both wrestler of and father to the child now having a grand mal seizure. 

Racing up the stairs of an old house in the dark, half asleep, half unsure of what you’ll find or do when you breach the top stair is nothing but a series of unfolding horrors.  You’ve gone from resting to racing, furious to fearful, curious to crashing in less than 7 seconds.  Pulling open the door and flipping on the light, a most horrifying spectacle is revealed – a contorted, sort of human-like thing lies in front of you.  Hands, curiously twisted inwards in a peculiar spiral, pointing a strict five-finger pose as if attempting to reach something in the bottom of a honey-jar.  Her head twisted to the left perfectly following the contortion of the jaw line.  Eyes – empty of everything, dead in all respects.  From somewhere in this awkward arrangement of misplaced features comes that strange, throaty creaking; the sound of stressed bone and organ – struggling for air, life, familiarity, balance.  Unable to find any, it continues twisting the poor girl in search of its version of peace – its grip ever tightening, relentless, uncaring.

Her legs seem to have learned something from watching her arms as they too bear the contorted, fetal twist and patterning seen in the arms.  Her poor feet, bruised from kicking the bottom of the bus seat twist as if looking for something to grasp; a remnant from some primal instinct that says, “climb away from danger”.  Funny how the feet are the only features responding appropriately – the rest of her is on its’ own.

Every muscle in her body is working in opposite directions at once and the resulting mass is as confusing as it is pathetic.  More pathetic still is the father of this child – helpless to do anything but watch the clock, watch the body, watch the minutes turn to hours. 

I calm her with words as best I can but in reality, the smooth words and luscious prayers offered up are more for me than for her.  The creaking finally stops but this only means that breathing has stopped as well.  The blue hue of the lips confirms my fear and the facial twist unfolds a new level of horror.  Black and white was bad, but now color makes this nightmare even worse.

At three minutes I’m supposed to administer medication and in the timeframe between awareness and retrieval of my little girl – a lifetime has passed.  You guess at what three minutes looks like to someone in the rational world and make your best guess.  The diastat looks like a shotgun, and the thought of using it on your poor girl – already such a victim, conjures up that horrible time in life where you had to put down an ailing pet.  You know the medicine will save her, but the administering of such a tool on something so precious is more than your rational mind can deal with so it substitutes the absurd.

The quiet room with the little girl made out of tightly twisted rubber bands, suddenly erupts in a painful gasp – the lungs won this argument and the diaphragm capitulates.  She begins to breathe, like an old dog at first – then with a slow, rhythmic pattern, she releases the blue in her lips, sends it back to some other bruise on her body for awhile.  I too finally begin to breathe – I being to believe that there is a compassionate God and he does care for this little girl.   Her face now looks less painful, more frustrated; her feet no longer looking for an escape, her back, more supine.

You’ve both lived through another seizure, another notch in your belt, another data point for the neurologist, and another gray hair for a head rapidly forgetting what color was.

She’ll sleep for many hours now and be madder than hell later.  That’s later though – we don’t do “later” in our house.  Now is all we can accommodate. 

Wednesday, June 22, 2011

My Heart as Story Bait...


My days at work seem to be spent telling stories about complex situations.  I’m a strategist by profession, which means I’m supposed to have a plan for anything. The problem is, as you may have noticed from my writing – planning and executing are not my gifts.  Living and reacting in an ambiguous flux is more in line with my being.  Ask me to plan a party and I fail. Have me turn a funeral into a party; now we have something to work with.

The stories I tell, those are all just experiences I’ve gathered over the years by using my heart as “story-bait”, chumming as it were, in hopes of hooking some big meaning in an increasingly meaningless world.  I can tell this is so because when I start to tell those stories, people’s eyes, light up.  Their heads actually begin to float with the ebb and flow of the tale; their lips and eyelids move in anticipation of a revelation, yet to be delivered.

I know their hearts are hungry for this relationship, simply because they pay attention, they relate, they want more.  They’ve allowed themselves to separate the idea of acceptance and comprehension and the liberating effect of that delineation is the ability to simply enjoy something.  Most people don’t dare to reveal their heart to things they don’t understand so they live only within the confines of things they understand.

Try to understand a severe disability and you immediately bog down in theology or philosophy.  Try to comprehend them and you disappear into the rational world of medical science.  Try simply accepting them and you suddenly see the beauty of a thousand fireflies on a warm summer night.  You see the dance of night birds in the waning evening sky, you see the beauty that God, with ever so much pain in his heart, sees.

He sees the beauty beneath the emotional agony, the strength below the bruises, the sight behind her blind eyes.  He sees the wisdom in her confusion, the passion in her obsessions, and the softness behind the cracked and calloused knuckles.  Her gaited step is as graceful as a warm breeze over a wheat field – her fisted punch, carries the beautiful message of the seriousness of it all.  He sees all this, he sees the pain, the damage, and he knows it’s not right.  What he also sees is the purpose in all of it. 

My heart, my story carries the tears that my bait has captured.  Wisdom as a strategist means that I carry a message that touches the heart through the mind.  God, the supreme strategist sees it the other way around; he uses my stories to touch the mind through the heart – the difference between the two approaches determines how you look at something as common as a stair step, a parking space, the pull of a door.  It’s the only way disability becomes the only ability that we truly have.

Monday, June 20, 2011

Assisted Living


I was a little apprehensive at the thought of taking Bethany along to visit Sherry’s mom at the assisted living center; the thought of all those seniors, lined up like so many bowling pins waiting for a Korean bowling ball to come along and score a spare or worse, a strike.  Our helper had left for the day and while Sherry daily makes the visit – I am far less frequent a visitor.  It turns out Bethany goes along with some degree of regularity.

Sherry assured me that she was “pretty good” whenever she went there and even as we punched in the door code to get inside, I found myself wondering what “pretty good” meant.  For Bethany, pretty good can mean many different things.  It can mean she was quiet, polite and carried that characteristic smile that goes from ear to ear.  It can also mean that she only took out one set of false teeth, knocked over only three people and only ripped two dirty diapers.

Once we got into mom’s room, Bethany showed me what “pretty good” looks like.  She gently took Marilyn’s hand and gently held it while looking directly into her eyes.  This was a departure because Bethany holds nothing gently and has such poor vision that “seeing” is a relative term.  Mom was in a wheelchair and Bethany, standing at her side – hand in hand was a sight to behold. 

I was quite nervous about this as Bethany can in an instant turn a gentle caress into a death grip that could easily crush 16 out of 27 available bones in a hand.  It would happen so quick that as a spectator, I’d be helpless to do anything.  Even as we stood there, me half watching mom, half trying to understand what she’s saying, half trying to understand her physical state, half monitoring Bethany and half in amazement that the whole thing was somehow working…a lot of halves rolled through my mind.  You do the math on it and it doesn’t add up.  You do the math on it with so many variables in an assisted living home and add in four more “halves” and the math works perfectly.  Here, fourteen halves add up to three-quarters of a melon. 

Even as the odd stranger wanders into the room (yet another variable to worry about), a seamless relationship ensues:  Sherry maneuvering the wheelchair, Bethany holding a feeble hand and now another woman blocking the door.  Sherry, with the competence and grace of the Lord, gently shoo’s Helen out, straightens Marilyn up, aligns Bethany with our preferred path of exit and moves the ensemble towards the courtyard.  My breath was literally taken away at the sight of all this.

Once we got outside, I discovered that the courtyard had a large circular path around the outer circumference of it.  A perfect, narrow path – just what a tired mind needs; a delightful trip around the yard that requires neither skill nor imagination to navigate.  Keep walking till someone hauls you back indoors.

Sherry was in command of the wheelchair, Bethany dutifully assisting in the push with one hand on the back of the chair and her usual clip/clop step keeping time with the parade.  I sat in the shade and watched in amazement as the troupe made 5 or 6 laps in the bright June sunshine.  Bethany held a calm demeanor that looked to me like “purpose”.  She pushed that chair, held mom’s hand, kept pace with Sherry as if it were her job in this life to make sure that those three things happened in just that order.  Never before has the sight of the blind leading the blind held so much promise, beauty or lesson for me.  “To those whom much has been given, much will be asked” came to mind and I realized then that I was doing nothing – those who were asked to do the work here, today were the rich ones.  Especially Bethany.

I’m amazed at my wife, her compassion, her fortitude, and her love.  I’m mystified by Bethany who’s complexity trumps all that we think we do, I’m humbled by her big brothers who, in the wake of this journey with no destination, maintain a loving discernment so uncharacteristic of the “me” generations.  For me, “assisted living” is exactly what the place afforded me – it helped me in my living.

Friday, June 17, 2011

Beauty and the Beast


I was away on business for the better part of a week and returning home was a mix of emotions.  I’d decided early that travel to and from the city would be far more interesting on the train so I booked a ticket, loaded my backpack, donned my goofy straw fedora, and boarded the train.  I felt sad that my wife couldn’t join me for a few days but carried a bit of relief at the thought that she could at least enjoy a “respite weekend” without Bethany or me around.

We have this unwritten rule of “no news is good news”, a protocol we’d agreed upon when I traveled to Iraq in 2004.  Chicago isn’t Iraq but still, I heard nothing from home and sent nothing back that way.  In the Bible, the book of Psalms has this little phrase: “Selah”, which is a bit of repose – a musical interlude and I concluded that our silence was just that.

Much to my dismay, there was little silence at home.  Bethany was hitting herself most of the week and while I was with clients at a cocktail reception – the text messages finally started flowing in from the helpers.  “Does B always hit herself like this”? read the first message.  “she keeps crying”, read the second.  Excusing myself from the glamour and glitz of the crowd, I walked off to spot near the river and responded, “yes”.

I stood there for a few minutes in the evening chill, looking down the river at the expensive condominiums, the yachts, the crowd, the darkening sky.  It now all looked so contemptuous whereas before, it all looked so perfect.  Suddenly it was all as foreign to me as Iraq was. The Chicago river looked exactly like the Tigris river, the buildings took on the same hue as the dusty ones Baghdad.  The people, they too became as the Iraqis:  beautiful, mysterious, and beyond all comprehension.  I was instantly angry with all of it.  Angry with wealth, success, beauty, anything that wasn’t as miserable as I was - it all became a target for my contempt. 

That’s exactly what I saw that evening.  I no longer saw architects, designers, and executives; I saw moving lips, shallow smiles and a building that was far more cavernous and foreboding than safe and inviting.  Again, my world was collapsing in on itself and I wanted to flee, to go where I was safe and in control. 

That night, Bethany beat her face until both cheekbones were black.  Her eyes, swollen nearly closed, like those of a newborn – her fists, cracked and bleeding; again.  She finally was quiet and Sherry, finally able to get some sleep.  At 4am, the cycle began again.  Her eyes were rolled back in her head and her fists began the familiar high-and-outside swing followed by a loud “krr-rack”!

I excused myself from the party – God had granted me the grace to keep my mouth shut and I dared not stay another minute.  I saw an opening in the crowd, muttered a feeble “thank you” to the host and bolted for a taxi.  The crowd, they parted like the Red Sea.  In fact, I laughed to myself as I headed through them – watching them separate like so many tons of water, holding back just long enough for me to reach the safety of the other side before collapsing back in on anyone intent on keeping me there.  I was safe, on my way to the Promised Land and thankful for the providence that got me this far.

The train ride home was as quirky as it was fun.  My straw fedora…a hit with every great grandmother I met. Getting off the train at home reminded me of being a kid in the early ‘60’s, sitting in the back seat of the Impala, eating French fries and watching the passengers and freight disembark from the “Pere Marquette”, just arriving from Chicago.

Walking in the dark from the train to the parking lot – the sound of the diesel whirring and the pneumatic brakes hissing, people talking excitedly, the gentle rain pattering on my hat…  Walking to my parked, rusty, old truck, I felt the comforting hand of four generations of Fik men, all of whom have enjoyed that same sound in that same location, firmly wrap around my heart.  I knew what was waiting at home; but for now at least, I knew in my heart that all is well.

Sunday, June 12, 2011

What Happens When I let go of that Little Hand?


At dinner last night someone asked me what the “long term prognosis is for Bethany”.  I rattled off the customary answer that Sherry and I have rehearsed for the last five years. What fell off my tongue was one thing – what was seething in my heart was quite another.  I explained that she's physically healthy and will likely outlive the both of us in the short-term, but what happens after we’re both dead is anyone’s guess.

I talk about the epiphany we had when we realized that once she turns eighteen, she’ll qualify to live in a group home – a point at which we’ll finally be released from the day-to-day care that drains us physically and emotionally. We talk about the day that we “get our lives back” and that thought seems to satisfy most inquiries. “So you really only need to hang in there for four more years right?”  I usually reply, “yeah – something like that”.

That thought haunted me all night. It wore me down and finally overtook me early this morning, right there in the shower.  I broke down and cried at the thought of someone else taking her hand and being “poppa” for the rest of her life. I cry even now in the cafe where I write this. How can anyone ever know the depths of this little girl and care for what God entrusted to us?  A group home has a rolling staff – mostly committed people who come into and go out of her life with a degree of predictability.  She’s only ever known us as a constant.

And what of that moment when we get our lives back?  We’ve come to know this as life. Our world-view has been twisted like a vine around a chain-link fence. Take the fence away and all you have is a permanently twisted vine that is neither relevant nor beautiful. Try straightening a twisted vine and you'll kill it. In all honesty I'm terrified of the day that we get our lives back. In some ways it signals that we've let go of the most challenging yet precious burden we've carried in our lives. It signals a new beginning but it's not a new beginning with fresh eyes - it's a new beginning started with a heavy heart and tired eyes.

Thursday, June 9, 2011

Reasonable Accomodation


One of the drawbacks in a family with a special needs child is that the parents rarely if ever get do something together.  “Together, as a couple” is a construct that rarely crosses our mind.  Typically, one goes out and attends while the other stays and attends to.

We experience this again last night with an event at the local high school.  We had no helpers for Bethany so we decided to take her with to a dinner and accompanying awards ceremony.  It’s a big gamble taking her out like this – last time we did, she ended up sending a fork over about three tables from ours, totally surprising the customers at table 14.  As patrons, they were gracious likely because we quickly hid and they had no idea our daughter had launched it. 

The trouble with events like this at the local high school is not the concern for table manners but rather, the concern for access and acceptance.  High schools are designed through a complex process of time, budget, politics and low-bid architecture.  Accommodating mainstream is the goal; reasonably accommodating handicap is merely the law.  Law, politics, and finance rarely cooperate and the resultant build-out is usually a bizarre affair that seems to have made everyone happy with themselves but has actually satisfied few.  Simply getting into the building is difficult enough and if you try using logic – you’re totally screwed.  Handicap parking is on the wrong side of the building.  The curb cuts are 200 yards away from the door and are on the other side of the locked driveway gate.  I guess the idea was that you could reasonably gain access by walking a quarter mile out of the way.  That way, the cars of others wouldn’t have to drive so far to get closer to the door?

As for acceptance, that’s even more awkward – not so much in that we feel like we don’t belong, but rather the people around us are simply, naturally, keeping a social distance and I don’t think they even realize it.  We can’t engage in witty conversation because, Bethany is beating her face: “hi Jim, great to see you!” (kra-whack!) “How’s your mom doing these days?” (biff! followed by a blood-curdling scream).  “Us?, we’re doing great – Sherry, she’s drooling, can you get that?”  The whole time the conversation is going on you’ve not once had eye contact – their eyes are glued to the little distancing spectacle in front of them.

We can’t dress in the popular garb of the day, either.   As for ladies, those frilly little skirts and low cut, summertime blouses that are so popular – they’ll look really funny down around your muffin-top, pending on how far Bethany managed to pull them down in the split second you tried to stuff potato salad in your mouth.  Even seated, grace and poise at a cafeteria table that has no place for a wheelchair is unlikely to happen.  You’re busy competing with garbage cans and access routes in the aisle, fixed-in-place seats at the table and your own plastic fork on slippery paper plates.  You can barely manage yourself let alone her.  So in typical fashion, you shovel in what you can and simply dump the rest.

Getting into the place was nightmare enough – that bizarre combination of reasonable accommodation and public works - again, makes you wonder if the one being reasonably accommodated was in reality, the contractor.

The fun of all this comes later, during the actual awards ceremony – once you’ve managed to get into the auditorium (of course the access without stairs is locked) and are comfortable with the fact that you’re taking a whole row of seats and blocking the aisle (again, reasonable accommodation), you sit back to listen.  The crowd goes quiet and the presenter begins.  In the still of the auditorium, she suddenly realizes the power of “echo”.  First it’s a little word, then a giggle, then a loud utterance…. and a then a full laugh.  You try to quiet her, and that’s all she needed – affirmation that she’s doing something she shouldn’t…game on! 

I love it really.  They talk, she screams and laughs…its all a delight.  You’re seeing the beauty of life in the middle of a social process and its absolutely wonderful.  Right there in the middle of despair you’re suddenly liberated.  You can see what matters and what doesn’t, you can see what’s foolish and what’s wise.  You’ve become the fool for a reason that’s worthy of the effort and oddly enough, she beckons others to join in, few however hear the call.  Again, Bethany teaches us to expect nothing and to experience everything. 

Monday, June 6, 2011

Crabby Old Men and Life


I’m not sure if its age or environment that’s influencing my attitude more.  My cynical, “wit razor” is as sharp and dangerous as any sling-blade ever was.  The path of emotional destruction it creates is as unappealing as it is effective. 

I knew old guys like me when I was a kid and it was always explained that they were like they were for any number legendary reasons.  “He got like that fighting the Germans” was a common label.  I remember thinking that my hometown must have been a lonely place with nothing but old ladies wearing funny looking shoes and rolled stockings around their ankles.   It had to be lonely like that because I knew so many old men who were irascible farts with gray hair and angry demeanors; they must have all been in Germany for a good long while.

For some of them, I’m sure war exacted its toll of the spirit.  For others, in reality it was perhaps a life that was forged in the Great Depression and calcified into place with factory jobs that offered little control and even less satisfaction.  Perhaps it was these things along with unfulfilled boyhood dreams.  Growing up in a city that borders a freshwater ocean to the west, huge forests to the south, rivers and lakes to the north and summers that are right out a Twain novel is exactly the perfect fertilizer to grow big dreams in a young boy.  A plinking rifle, a long summer day, and an old dog is a powerful combination in young mind, unfettered by time and schedule.  Mosquitoes, darkness and Fibber McGee on the radio along with obligatory chores are really the only constraints on his soul.

Having all that possibility, all that promise and beauty…having it all slowly squeezed out of your sights by choice – that would make anyone sad.  Sad people are somehow cheated people and cheated people are bitter.  Bitterness begets cynicism and cynicism leads to loneliness and despair.  It’s a downward spiral that gains speed as it drops closer to earth. 

I can still see those old guys still in my mind.  I can even see them now in the mirror.  What begat my cynicism?  I was never in Germany.  I have a great span of control in my job and if find it quite fulfilling.  My world-view was one of great promise for even as turbulent as the 60’s were to a young mind, I had an influence at home that was fair and compassionate.  My dreams are fulfilled and those same oceans, forests and rivers left their wonderful mark on my soul in ways and for reasons that I still not dare reveal to my mother (who was sure if you went near the lakes even for a moment, they’d never find the body).

I find it difficult to believe that the influence levied by one special-needs child could so twist a heart as to negate a lifetime of wonderful influence.  Perhaps my “war” is really more a struggle of time and pressure - one that is tearing me down or building me up; emotionally debilitating me, or in character, making me whole.

Either way – I have a whole new respect for those old guys who colored my world at that particular point in time.  It goes to show you that kids learn more by watching than by listening….

Thursday, June 2, 2011

Morning Anger and a Gentle Reproof


I’m not sure if it was the gentle breeze through the bedroom window or the loud “thunk” against the upstairs wall that woke me this morning.  I rolled over to face the alarm clock and thought “damn, up already”.  I lay there as if remaining motionless would somehow urge her back to sleep, then a second “thud” of a fist against wall plaster.  A second muttering of “damn” and then another motionless moment.

You try not to start the morning on such a sour note, but the gravity of the next few hours lies as heavy on your heart as the lead shot-filled blanket that we use to calm her does on your chest.  Mornings are particularly rough, she has no more interest in being readied for the day than we do readying her and she decides to fight every step of the way. 

As it turns out, this morning was different.  I’d gone upstairs to open the half-height door we installed in her bedroom so she could come down, and she just lay there – still, quiet, staring at the ceiling fan as it’s lazy circular motion slowly died.  When she’s calm and awake in the morning it usually means one of two things: you’re in for an emotional storm very soon, or she’ll have a wonderful morning.  The latter is so rare that we don’t even give the thought of having two options much daylight.  We simply automate the process and hope for as much efficiency as possible.  Aim for an 8:45am bus departure, narrow the focus and run with it.

Once we managed to get through the routine of face washing, hair brushing, eye drops and a healthy dose of applesauce-slathered medications – you get a chance to see the actual “face of the day”.  Will it be pleasant, terse, agreeable?  You never can tell.  Today however, she simply put her arms around my waist and buried that big mop of hair against my chest and squeezed.  She wanted to be hugged and held close.  No punching, no pinching, no obsessions, just a brief interlude of intimacy.  I found the action so surprising and heart warming that I nearly began to cry.  She held close to me and laughed when I said a few things about being a “crazy Korean”.  She somehow finds humor in the intonation of the statement.

Moments like this are precious, even to the point of me looking forward to seeing her at the end of her school day.  I held on to that thought all day – a loving, gentle daughter that really just wanted to be with me.  Its those huge emotional swings that exhaust me.  Going from bitter anger and disappointment to elation, back down to melancholy, then a brief infusion of hope.  I envy people who can stay steady though all these changing tides.  I imagine them as being so confident and competent that they can hold to one spot and weather the storm like a lighthouse.  I realize that in truth, they’re probably simply emotionally numb; dumbfounded like a robin that just flew into a closed window.

As for me, I need to learn that life can be full of pleasant surprises even when you’re confident that none will appear.  Surprises like a warm, loving hug when you least anticipate it.  Lesson learned.