Signs and wonders


Six or Eight weeks ago, my son was at his urologist for a routine set of tests to check how his mitrofanoff was functioning.  For years his bladder never completely drained because of nerve damage.  To address the issue, he started cathing years ago.  But as my son put it, “my urethra is like a labyrinth.  So for many years, he cathed but it was still not draining because the catheter did not go all the way to his bladder.  So a year and a half ago, he got external port put in (mitrofanoff).  It worked like a charm!

This brings us to a couple of weeks ago.  They did a routine ultrasound to see how his bladder was doing.  For years it had been stretched out because it never fully drained.  This test was supposed to be no big deal…just checking the size.  But during the test, they saw “a spot.”  The urologist told us it was probably debris, but that he needed a cystoscopy and biopsy to check it out.

I know what you are thinking because I thought it too, the C word.  But I have become a master of pushing things out of my mind.  When you are waiting on test results, there is nothing you can do.  Worry is pointless.  It has taken a decade, but now I can shove that kind of stuff into a hidden chamber of my mind.

But every once in a while, it sneaks its head out and dumps a ton of adrenaline into my bloodstream.  I panic, take a deep breath and move on.  That happened on Sunday when my son asked me what I thought “it” was.  I didn’t lie, but I gave him the best case scenario I could think of: scar tissue.  But the boogie monster was yelling the C word.

So yesterday was the big day.  We went in and he had a minor surgery.  It went really quickly.  He was in and out of the OR in only an hour.  While he was still coming out of anesthesia, the doctor took us to a consulting room to tell us how it went.  The first words out of his mouth were, “It is not cancer.”

He used the word and suddenly it was powerless.  It turns out it was just “goo” (probably puss from a previous surgery).  By the time he got into the bladder, it was already gone.  He passed it sometime after the ultrasound.

We got home from the hospital about 1pm.  I zonked out, slept till 5, ate dinner, watch TV till 7 and then slept the whole night.  I may have tricked my mind into not obsessing about the procedure, but my body was not fooled.  The stress was whirling around in its little corner, whether I was conscious of it or not.  Today I am exhausted.  I am extremely short with people about the little details of work.  I just want to scream, “None of this matters!”

Personal growth is a tricky business.  I did not consciously worry myself sick…but my body was not fooled.  I just need to focus on the fact that the news this time was good.  In this moment, all is well.  In this moment, we are whole.

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Open Letter to Children’s National Medical Center


To Children’s National Medical Center:

Below is a physician’s review I posted to Angie’s List.  Since your survey was eliciting feedback, I thought you should know.

Dr. Yewande Johnson met with our family shortly before my son was scheduled to go into the OR for his first of two surgeries in one week.  She took a very thorough history and took the time to introduce us to all of the residents that would be assisting her with my son’s sedation.  She noted that my son was a redhead and took the time to explain to us the issues that can arise because his biochemical makeup.  She asked about each of his prior surgeries, taking thorough notes of the issues we have encountered in the past.

We were so impressed with her professionalism that if possible we wanted her to be the anesthesiologist on the second surgery scheduled for later that week (it was Monday).  Had she politely declined, we would have thought her a good physician and left it at that.  But what she did next went so above and beyond the call of duty, that her name is forever etched into my head.  Mind you my son has had over 20 surgeries and I cannot remember one of his anesthesiologists by name.

When we mentioned the second surgery, Dr. Johnson asked why we had not scheduled the procedures back-to-back.  While the first surgery was very extensive, the second was relatively minor and required only 15-20 minutes to complete.  We explained that we had tried without success for a couple of months.  It was just not possible for us to coordinate the surgeons’ schedules.  It was at this point that she politely excused herself and said she would be right back.  Her resident continued with the exam.

Right before they were about to wheel my son back, she returned with a orthopedic surgeon in tow.  She explained that she had spoken with our regular orthopedic surgeon over the phone and convinced him to allow another orthopedic, who was free right then, to perform the relatively minor procedure.  She asked if it was OK.  OK!!! This was fantastic.  Not only did it save wear and tear on my son and our family, but it saved a huge sum of money for pre-op and post-op treatment, not to mention the additional days we would have had to stay in the hospital.

This action was nothing short of heroic.  I would not have thought any less of Dr. Johnson had she just performed the exam and done her job.  But she didn’t just do her job.  She went above and beyond the call of duty.  She is a shining example of why people should go into medicine.  There is no way I can ever repay her kindness.

The only thing I can do is fully recommend and endorse her.  If your child is scheduled for surgery at Children’s National Medical Center, be sure to tell your surgeon and ask for her by name.

Needless to say I gave Dr. Johnson all “A”s on her evaluation.  When your child is in the hospital, you surrender a great deal of your control as a parent to doctors, nurses and hospital employees.  No institution is perfect.  But a few outstanding individuals can make up for a few glitches here and there.

People like Dr. Johnson and Nurse Hannah are but two of individuals that tipped the scales far to the right of positive for this stay.  Please keep up the work and continue recruiting compassionate people to carry out your hospitals mission.

Sincerely,

 

Benjamin Roberts

Father of Ethan

Hilarious


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When my son is in the hospital, my wife and I take shifts staying overnight with him.  That way there is always one coherent parent present when Drs and nurses come by.  In this last 6 day stint, Monday was one of my nights off.  When I got home I was so keyed up, I had to watch TV for a while before my mind would relax enough that I could sleep.  I watch several comedy specials on Netfliks.

One of the specials I watched was Louis CK’s “Hilarious.”  One of his bits was about Americans and their insistence on complaining while living in paradise.  He was joking about what a miracle cell phones are; but that Americans constantly gripe about them being slow or not working properly.  You have an amazing piece of technology.  But instead of being in awe, you nitpick over slight inconveniences.

As I drifted off to sleep that night, I realized how whiney I can sometimes be.  When my son is in the hospital, I bitch and moan to myself about how seeming unfair the universe is.  But I miss the lesson of how incredibly lucky I am.  I have access to a world class health facility.  I have amazing doctors and nurses working round the clock to transform my son’s broken body into a working whole.  I have great insurance that pays the bulk of my costs.  I have a job with generous vacation that allows me to be present at all of his surgeries.  I have constant access to the internet where friends and family show their love and support.  I have a strong marriage with an incredible woman.  I have a caring extended family.

In short, I have nothing to complain about.  Nothing.  Yes, my family was dealt a rough hand, but we have all of our bases covered.

I found my gratitude.  Thank you to my family.  Thank you to my friends.  And thank you to the dedicated professionals that work at Children’s National Medical Center.  I am in debt to the generosity of others.

Kinda Prayin’


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I must preface my remarks today with an observation.  Love has become an almost meaningless word to me.  It is so ubiquitous in our lexicon that it can refer to hamburgers, sex or a lifelong commitment.  So I am going to stop using it.  For today’s entry the word I will use to convey my thoughts is kind.  Kind in this context is wanting the very best for another person.

As I have mentioned in previous postings this week, on Sunday my family will be going to Children’s Hospital so that my son can undergo two surgeries.  Now there are a whole host of people that will be wanting to convey their sympathies for my son.  Most of my family and childhood friends will express that sentiment by saying  they will be praying for us.

Do I believe in prayer?  Yes, but it took a very circuitous route for me to come back to belief in prayer.  What I believe prayer is and what it does has radically changed over the years.  Here is what I no longer believe:  rayer is not the Jerry Lewis telethon.  Whatever your concept of God is, I am quite sure her/his eternal plans are not impacted by the number and sincerity of “calls” that come in.

“Little Billy got the requisite number of 900 prayers to cure his cancer, but sadly his Aunt Suzie’s prayer did not seem genuine enough leaving him one short, so it’s death for him.”

I just don’t think the universe works that way.

Here is what I do think prayer does:  When someone says they are praying for me, they are reaching out with kindness and expressing that they want the very best for me.  That does two things in my book.  First it gives me a psychological boost knowing that someone has got my back and is partnering with the most powerful concept they can conceive of, namely God.  Secondly I think praying for someone else makes the prayer more in tune with the pain in the world.  I bet it makes them act just a little bit more kindly towards other people in their lives.  That gives suffering meaning.  Even if the subject of prayer has a tragic outcome, knowing that their suffering made other people act just a little bit more kindly gives some meaning to otherwise meaningless outcome.

So do I covet prayers for my son?  You betcha!

Lament of a Tired Soul


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I have a favorite poem.  It is the “Love Song of J. Alfred Prufrock” by  T. S. Eliot.  It is a poem of a tired soul.  The first stanza in particular resonates with me today.

 Let us go then, you and I,

When the evening is spread out against the sky

Like a patient etherized upon a table;

Let us go, through certain half-deserted streets,

The muttering retreats

Of restless nights in one-night cheap hotels

And sawdust restaurants with oyster-shells:

Streets that follow like a tedious argument

Of insidious intent

To lead you to an overwhelming question …

Oh, do not ask, “What is it?”

Let us go and make our visit.

-T.S. Eliot

I feel old today.  Though I am just past my middle years, I am tired, tired beyond my years.

Sunday, my family checks into the hospital so that my son can have two more surgeries in one week.  That will bring our grand total to 5 this year.

I have lost two close friends this year, one to death another to relocation.  My job is uncertain, its value questionable at best.

I feel old.

The VACTERL beast breaths down my neck.  I will fight him the best I can and live to fight another day.

But I am tired, so very tired.

My world is shrinking.  My focus narrow is narrow.  I have to be there.  I have to be strong.

I long for connectedness, for relevance, for value.  But these are luxuries for those who have climbed Maslow’s mountain.  I am at its base bearing the weight of the world.

Talk is cheap.  The pills are weak.  I must trudge on and on and on.

The Black Hole


Deep inside of me there is a black hole.  It is a malevolent mass of pure evil.  Were it to be freed, I might be capable of doing unthinkable things.

Usually, it is under wraps.  It is buried so deeply in my psyche, that under normal circumstances, I cannot even access it.  But under prolonged stress, like the last 5 months, it bubbles up close to the surface.

I don’t have to say or do anything.  But the people around me know it’s there and can sense its presence.  My boss, my wife and my kid have all seen it.  I am sure it raises the hairs on the back of their necks.  My hands shake, my teeth are clenched and I am barely able to speak.

It scares me that there is something so negative inside of me.  I feel out of control when it surfaces.  I am able to control my actions, but just barely.

I have a lot of compassion for those who find themselves in the criminal justice system.  I know that given the wrong set of circumstances, I too could be in their shoes.

The Winter of My Discontent


VACTERL occasionally gives you a little break.  Though you may have an onerous lists of tasks required to keep your child happy and healthy, you get into an offbeat rhythm that mimics normal life.  You find a place of serenity and you think that you have beaten back the deadly predators.

But really you are kidding yourself.  The minute you think you have it whipped, it knocks the shit out of you and leaves you breathless.  VACTERL is an evil minion of death that is desperate to get its talons into you and your child.  If it does not kill, it ravages both parent and child alike. 

But you keep plodding on.  Because that is what you have to do.  You have to force yourself out of bed every day and go through the life-giving rituals that allow your child to continue.  There is no quitting.  There is no time for quiet contemplation.  There is just the continuing dance in the quicksand.  You flail about to keep your heads above the sand.

Peace will never come, just an end.  Whose end is unclear.

Legacy Code


I had my Imagine meeting this morning.  It was our second to the last meeting.  Not sure what comes next, but I’m open to possibilities.

We are reading the book Naked Spirituality by Brian McLaren.  I had procrastinated all week and as of noon yesterday, I had not read the second half of the book that was being covered this morning.  My Kindle mocked me showing that I had only read 48% of the book.

The book compares the spiritual life to the seasons of the year.  The book is broken into four sections starting with spring and ending in winter.  Somehow I had slogged through the first half of the book.  Normally if a book does not catch me in the first couple of chapters, I toss it and move on.  This book was teetering on the edge of oblivion.  It is not that it is a bad book, but the spring and summer chapters did not really resonate.  My faith is not new, like spring.  Nor am I in the active season of summer.  I claim the name of Christian only by heritage and not by practice.  The first half of the book was full of really helpful practices for active Christians.  For what it was, it was good.  But since I had no interest revisiting that part of my life, it was a bit dry.

Last night I had to finish the book for today’s meeting.  I thought about blowing it off, but I wanted to honor the commitment to my group.  So I did the lazy thing.  I turned on the text-to-speech feature on my old Kindle and listed to the last bits of the first half of the book.  I was only halfheartedly listening and was about to drift off into a nap.  But then I hit autumn.  Bang!  To borrow from a tired old sermon illustration, McLaren came into my living room and started moving all the furniture around.  Hell he was tossing it from one side of the room to the other.  This guy had walked in my shoes.  He knew the desolation of faith lost.  I pretty much read the rest of the book in one sitting.

We discussed autumn and winter in our group.  While I was listening to everyone’s very personal stories of faith and loss a metaphor came to me.

For those of you who do not know, I work in software development.  The particular application I work on is old code…like parts of it were written 20 years ago.  That is an eternity in software.  When you are working on someone else’s old code, you call it legacy code.  It is extremely challenging working on legacy code because all of the original requirements are sitting in landfills or have been recycled into Starbucks heat sleeves.

So the business describes a new feature that they want and it is your job to incorporate it into the legacy app.  Problem is: every time you add new code, you end up breaking old code.  It is an endless cycle of changing one thing and breaking two others.  It can drive you nutty.

At a certain point, the code becomes completely unmanageable and you have to completely refactor the old stuff.  Typically, you toss out all of the section and start from scratch…green field development.  If you are lucky, when you enter a green field, you have new requirements and completely ignore the legacy stuff.

That is my life in a nutshell.  I grew up in the church.  Faith was core to my being.  But over the years, my theology became extremely complex.  I desperately tried to cling to the Christian faith of my childhood.  But when the overarching theme of my life became watching the suffering of a child, the “code” stopped working.  I tried ever more elaborate spiritual practices, desperately trying to make sense of what was completely senseless.

After the suicide of one of my mentors, the whole program collapsed.  Faith was dead.  God was dead.  Heck he was never alive.  Religion, faith and God had failed me.  It was an Atheist.  There was not; and never had been a god.

It was autumn in Benland.  I watch as a lifetime of faith died an agonizing death.

Once everything was finally dead, I was in winter.  But by letting it all die, I had cleared the field.  I claimed the name Atheist.  Only when the landscape was completely barren did I realize that there was a void.  I had severed my connection to god.  But I had also lost the connection to me.  I was a void.  I was empty.  I was powerless.

Only when I surveyed the blank snowy landscape of winter did I notice that I needed something.  I still cannot completely explain what I need.  But I need.  I need.  I am needy.

Gone is the faith of my childhood.  The old legacy software is nonfunctional, inert.  But now there is space.  I can begin again.  I can help write the new program.

I am not sure what is next.  I do not know what will pass for faith in the next phase of my life.  But there is desire and there is space.  I am not in a rush.  I am taking my time.  It would be easy to flip the switch on for the old code.  But it would collapse under its own weight in short order.  This time I am not taking the easy answers.  This time I will not blindly accept the platitudes of others.  This time I will imagine.

Imagine, part 7


Thud!

I start this posting with a quote from Pink Floyd’s The Wall.  It is written from the perspective of a husband to his wife.  But I use it here to describe the next phase of my faith journey.

Day after day, love turns grey
Like the skin of a dying man.
Night after night, we pretend it’s all right
But I have grown older and
You have grown colder and
Nothing is very much fun anymore.
And I can feel one of my turns coming on.
I feel cold as a razor blade,
Tight as a tourniquet,
Dry as a funeral drum.

–One of my Turns, Roger Waters of Pink Floyd

Before it began, my ministry career was over.  Try as I might, I could only find two paths.

1.  This was a test of my faith.  God would provide if I would step out in faith.

2.  I was full of shit.  There was no God.  There was no calling.  My relationship with god was just a foolish self-delusion.

I did not have the faith to pursue option #1.  Regardless of whether or not it was true, I did not believe enough.  Over time, I began to embrace option #2.

As if to confirm my choice, my Emmaus sponsor, my spiritual mentor, the man whose faith I modeled my own after, committed suicide.

Dead

I continued to go to church.  At first out of habit, then because my wife got a job at a new church.  I went through the motions.  But it meant nothing.

Dead

I read a lot of books.  I am an atheist.

I am.

No really.

OK, I could be wrong.

I am an agnostic.  Maybe there is a god.

Damn it.  There is something that connects us.  I am not sure what it is.  But there IS something.

All of my old tricks no longer work.  I need to try something new.

Buddhism?

Nah.

Hinduism?

Nah.

What I need, is to rethink everything.

What I need, is to imagine.

Imagine, part 6


Crash!

I preface this post with a couple of thoughts.  It is impossible for me to put into words how much I love my son.  He inspires me daily.  Let me be clear I do not in any way, shape or form blame him for what happened to me.  What follows is purely the result of my ego and a lifetime of bad theology.

My last posting ended with Jenn and me on the road to the hospital to have our son.  We were practically giddy with excitement.  This was the big day.

We got to the hospital and were put in the pre-surgical ward.  Our son was breach and had to be delivered by c-section.  We had to wait for a couple of hours because there were some emergencies in front of us.  But finally they wheeled her back.  I had to wait in the hall until she had the epidural and was prepped.

When they called me into the room, things happened very quickly but I recall them in slow motion.  Jenn was draped so that she could not see the incision point.  They had me sit in a chair right by her head.  I had a greater vantage point, but I could not see the incision either.  They started almost the second I took my seat.  The first thing that caught my attention was the smell of burning flesh (as they cauterized the wound).  I almost hurled because I was not expecting smells.  I kind of chuckled to myself and regained my composure.

It took about a minute to free Ethan from the womb.  What happened next put me in a state of panic.  They silently lifted him into my field of view.  I noticed that one leg had no tone and was significantly smaller than the other.  He was not breathing and was pale blue.  They took him to a nearby table and started CPR.  Time stopped.  “God let him breath.  Please let him breath.”  Eternity passed.

And finally he cried.  The nurses and doctors examined him.  They splayed his butt cheeks and gave each other knowing glances.

My mind was reeling.

They wrapped him (Jenn knew nothing at this point) and brought him for her to see.  They congratulated us and said nothing.  Ethan and were moved into recovery while Jenn was stitched up.

I robotically called my family.  “It’s a boy.  Yes, everything was fine.  Gotta go.”

They wheeled Jenn back and handed her the baby.

“Blah blah blah blah blah blah blah, problem.  Blah blah blah blah no anus.   Blah blah blah blah blah Nonnative Intensive Care.  Blah blah…can’t come until she can sit in a wheel chair…Blah…sir, follow us.

Tubes…IVs…Monitors…What in the hell just happened.  “Dear God, I have the faith.  Heal him now…Now…NOW!!!

“Sir we need to do a procedure…come back later…call family…go to wife.”

Dial home.  “Mom.”  I lost it and cried uncontrollably.  This was the first of many loses of composure.

The rest of the story is well documented in the rest of this blog.  Fast forward…two weeks.

I met with my mentor.  I lost it again.  He consoled me.  It would be OK.  This was our last meeting before I went before the district superintendent.  My mentor told me he had met with many candidates over the course of his ministry.  Never had he worked with a candidate with so clear a calling.  He looked forward to great things.

Fast forward…several weeks later.

I got the hospital bill.  It was over $100,000.  My insurance had not paid anything.  Panic.

Fast forward…weeks.

I got the bill cleared up.  Insurance covered it all.  I wondered what the Methodist Church’s insurance would have covered.  Called my mentor.  “Oh, it is a standard 80/20% policy.”

Hmmmm…

So if I was a pastor.  I would be on the hook for $20,000.  This is the first of many many many bills.  First year, my salary would be capped at $28,000.  What would have happened?  What will happen?  This is the first of many bills.  How will I pay for this?

HOW AM I GOING TO SUPPORT MY FAMILY?

More to come…