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.

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 Music of Sorrow


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Music is very important to me.  I am not a musician and I cannot create music of my own.  But when I listen, I really listen.  I sometimes think of music as an old testament alter with smoke wafting into the air.  The prevailing winds determine the patterns and intensity of the listening experience.  When I am in a state of musical rapture, I just wish I could dissolve into the smoke.

Yesterday, I found out that my son has had a previously undiagnosed stricture in his urethra.  It requires that a semi-permanent foley catheter be left in for a couple of months.  This would not be such a big deal, were we not in the midst of having his let extended, an extremely invasive procedure.  I took the news badly and have been in a dismal funk since hearing the news.

Then this morning, when I got to my desk, I started listening to Led Zeppelin’s Kashmir.  I closed my eyes and just absorbed the sorrowful tones.  This is not peppy music to raise your spirits.  It is gut wrenching notes of mourning.  But when I let my soul commingle with the sounds reverberating in my ears, I have a sense that I am not alone.  Many have traveled this road before and I will not be the last.   It pulls me from the brink and gives me sanguine sense of peace.

The Long Slog


Most days, VACTERL is just a pain in the ass.  It’s just time consuming and it wastes your child’s time, your time and family time.  There is a checklist of tasks that you must worry about every day, which normal families take for granted.  But over time any set of tasks can become routine to the point that they just become background noise.  This is how it has been most of my child’s life.  It is our normal and for the most part, we are happy.

But periodically, life is disrupted by a major crisis.  There is a new set of tasks that MUST be performed to prevent dire consequences.  Some of these crises are predictable others are totally random.  It is in the midst of these major crises that despair can set in.

I am in moving through one of those periods right now.  We are working through a painful procedure and a long road of challenging physical therapy.  Sometime it is just unbearable to watch your child go through excruciating pain.  While his peers are dealing with the loss of a soccer game, my kid is learning to walk again.  It rocks your world view and it is a drain on the soul.

The day after my son’s latest surgery, I got a call while I was eating in the hospital cafeteria informing me that my closest friend at work died suddenly of a heart attack.  Add to that problems at work in general and you have the perfect storm.

Fortunately, I have learned that these times of despair are transient.  As bad as I am feeling, as disappointed I am with the world and my problems, I know that this is not forever.  Things may suck for another month, another quarter or for a year.  But eventually balance will be achieved and some measure of happiness will be a part of my life.

Joy may be elusive today.  But at some point it will be in my grasp again.

The Swinger


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When my son was first born, I was on the cusp of going into the ministry.  Because I was quasi clergy, I felt that I had to put a positive spin on everything.  I said obnoxious things like, “thank God this happened to us.  We have the resources and a strong relationship.  We can deal with this.”  Or, “God is good all the time.”  I tried to be publically upbeat.  When we were in the hospital or at doctor’s appointments, I was always upbeat and even joked with nurses and orderlies.  I avoided any public display of emotion.  Only when I was completely overwhelmed would I let it come out.  (One notable example was when I was in the hospital gift shop.  I was getting something, I do not recall what.  The cashier asked me how my baby was.  I burst into tears and left without making my purchase.  I avoided the gift shop the rest of the stay.)

As guys, we have it drilled into us from a young age to keep our shit together.  I occasionally would allow myself to cry in the car.  But for the most part, I just stuffed it down into a dark part of my soul.  People would ask me how my son was doing and I would give a very clinical description, sometime more than they wanted to know.  But if they asked how I was doing, I would just say, “I’m hanging in there.”  It was complete and total malarkey.

This was a recipe for disaster.  I began having road rage.  I would blow up and my employees and colleagues.  I swore like a sailor.  My face began to change.  At work I went from being the Gentle Ben to the Mountain Troll.  For the first time in my life, people were afraid of me.  My stellar career and my clergy calling quickly dissolved.  The angrier I got, the more I stuffed it into the dark place, this made me angrier.  It was a vicious circle.

Eventually things just started to disintegrate.  My world got smaller and smaller, to the point where I had just two friends at work and my immediate family.  Something had to change.  Then, quite by accident, I discovered blogging.  My first blog was all funny stuff.  I have a decent sense of humor and I wrote whimsical little stories about my life.  But every now and then I gave peeks behind the curtain.  People would occasionally be offended but for the most part they were very supportive.

As the years went by, I became more honest and graphic.  I stopped sugar coating what was happening and just went with the brutal truth.  I occasionally cringe when I read those entries.  But on the whole, I felt better.  I also started attending seminars on spirituality.  I started sharing my story in real time with other people.  What I found was that they had equally heart breaking stories with different themes.  Slowly the realization sunk in that everyone is carrying around these heroic stories of survival.  The more I told my story and the more I heard their stories, the better I felt.  I learned to embrace my darker emotions.  If I was sad, I found an outlet for expressing my sadness.  If I was pissed off, I would find a way to vent my anger.  Denying that I had these feelings was pointless and self-destructive.

So if you read my blog and you see that I am in the pits of despair, it is OK.  I am just letting off steam.  Writing is a freeing experience.  I am not always an emotional wreck.  Often I am happy.  Sometimes it is just for a moment, sometime for days.  The pendulum of my life swings wildly.  I am at peace with that because no matter the state, nothing is permanent.

So whether you’re having a great or a rotten day, don’t be afraid of it.  Recognize it for what it is and know that it will not always be that way.

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.

UltraPyrus


To say that I am a pessimist would be an understatement.  Many an optimist has tried to change me, but I am just wired to think about the worst case scenario.  In my vocation, it is my job to pick every little thing apart.

But when you deal with chronic illness, you cannot always focus on the worst case scenario.  It will drive you buggy.  I should know, I am come to the brink a couple of times before someone pulled me back from the edge of the despair precipice.

Once in a while, I just need to clear my mind and look at what is right and what is good.  Today I want to focus just a moment on what I consider a triumph.

I consider myself to be pretty wired and plugged into the online world.  That statement would make my son laugh.  His internet footprint is about a size 18 men’s shoe and growing.  He has a YouTube channel where he reviews video games and video game related paraphernalia.  Specifically the kid is nuts about Mario and the Mario world.  He records videos tutorials for completing games he likes.  He has been doing it for several years now.

Every few weeks, I go up and check his content to make sure everything remains rated G.  As well as monitor his comments.  Well the other day we were chit chatting about how many people subscribe to his channel.  For the first couple of years, he kept at about 15-20 subscribers (mostly friends and family).  So I casually asked him how many subscribers he is up to.  He got a sullen look on his face and said just 180.

<spit out coffee here> WHAT???!  I was dumbfounded and said Wow.   What I was thinking was Holy &*%$$#!  I told him that was fantastic.  He was down in the dumps because someone he admires has a couple of hundred thousand.  I pointed out that he was 10 and person he admired was now an adult.  But he was seeing the glass half full.  (he must get that from his mother 😛 )

We talked it over for a while and I told him how proud I was.

But later that night I really got to thinking about it.  At age ten, I doubt I knew 180 people.  My art was limited to the number of people that happened to see our refrigerator door between cleanings.  I have been blogging for several years now and I am nowhere near 180 subscribers.  My curiosity forced me to take another look at his site.  When I opened the page, I saw an even more startling number, 250,000.  That is the number of hits his site has generated.

Wow.  His sight has been viewed over a quarter of a million times and 180 people regularly look at and comment on his creative outlet.

In spite of all of the medical crap he has to deal with on a daily basis… In spite of the limitations his body puts on him…he has managed to create a sizable virtual community.  And it is not limited to the virtual world.  He has friends, many friends.

I no longer worry about his future.  He is a fighter.  He is going to do just fine.

The glass is not half full.  It is beyond capacity and spilling out on to the floor.  I am a blessed parent.  To those of you dealing with the early years of VACTERL, I know it seems completely overwhelming.  But it gets better.  Don’t forget to look up every now and again and see just how far you have come.  Kids are truly the greatest blessing of life.