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Nothin’

26 Jul

A couple of months ago my husband Brian and I were with my aunt for the unveiling of my uncle’s tombstone.  It had been over one year since his passing and though traditionally the unveiling is done at the one year marker, for reasons that avail themselves to be a part of life, the unveiling happened at about 15 months.  At any rate, while we were driving in the car my aunt confided in us that the second year of living without her husband seemed to be harder than the first.  I remember really taking in what she said at the time and mulling over its meaning.  And quite frankly I haven’t stopped my mulling.

Our family (and more specifically my son), is at the 16 month marker from the date of learning of the dreaded brain tumor.  We are in the second year, and I concur with my aunt, it is harder.  I have a motto: “You mess with the brain, you mess with the entire body!”  And since Cole’s surgery, besides the obvious physical disabilities he is left to contend with, he has been left with an internal system that remains, at best, mysterious.  Quite frankly, his gastrointestinal system is a problem.  In fact, his last two trips to the hospital ER have been due to extreme pain in the region of the small intestine.  So much so, that only a narcotic pain relief system has saved him from the agony.  And because that is not the course of treatment we look to, on the long term, the diagnostic testing was moved up and completed this past Tuesday.

Now being that Cole has Crohn’s Disease on both his maternal and paternal sides of the family, as well as colon cancer heavily on my side along with ulcerative colitis, you can imagine how happy we were to learn that none of these issues befalls him.  Yes, we can let out a big sigh of relief…for he doesn’t have to contend with having had a malignant brain tumor and then contend with having any form of additional disease on top of the whopper he already endures.  A big “Praise the Lord” for that!

But what he does have heavy upon his mind and soul is the big nothing that showed up in every test and culture taken.  “Nothing, everything looks normal.”  Yet he has agonizing pain.  This is the “hard” I mentioned earlier.  The moving through the nothings of life and trying to keep the chin up.  The first year post tumor resection was spent in concentrated rehabilitation.  Our family was on high alert living off of the adrenaline rush of the circumstance.  Now we are not.  It’s as if we have turned another corner…  We have moved out of the big city of dodging cars and people, with blinking lights–green now yellow then red–which seemed to guide our every step.  And we are now heading along a path that is more subdued, plain, and perhaps a bit monotonous.  With a tumbleweed or two, from time to time, rolling across our path.  Not enough to invoke our internal emergency system (the chemicals which strengthen us in times of emergency), just enough to wear us out from dodging them.  And when we think there might be a tornado on the horizon, which could possibly kick up the ‘ol juices again, it turns out to be nothing more than the lackluster performance of a dust-devil.

So here we are, walking a long road of nothing.  Cole has pain and now has to somehow process that this is normal.

Being the last of the diagnostics were Tuesday, and yesterday he was down as a result; And today he was still suffering the tail end of the tests intrusions, I have to somehow remain hopeful that tomorrow we will figure out how to traverse this “second year” path no matter how droll the scenery may be.

Does that make sense to you, my reader?  Can you feel the anguish through my metaphorical ramblings?  Because I assure you, I am not lamenting the adventure of our previous year.  I am merely sharing my current observations.  And what they boil down to, in plain spoken text, is that it is harder to have to tell my son that his disabilities and internal sensitivities just might be here the rest of his life when in the first year we were pushing as hard as we could to help him gain back every ounce of ability lost.

That, dear friends, is my tumbleweed.

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Suicidal Tendencies

28 Jun

A few days before I learned my son Cole had a brain tumor, I took him to the ER because he was in need of hydration due to incessant vomiting (obviously a few days later we learned why!).  And though he had been throwing up most of the night and was white as a sheet, the nurse attending to him could not get over his t-shirt.  Knowing Cole, he probably threw something clean on to wear to the hospital without giving much thought to the character of the garment.  It happened to be a “band t-shirt”, and the band happened to be ‘Suicidal Tendencies’.  Honestly, I didn’t notice his clothes at all.  I was slightly irritated to be in the ER because I seem to be the ER specialist of the family and quite frankly I just wanted to be at home.  Therefore his clothing choice was an irrelevant fact until the RN began to lecture Cole about the literal meaning of the band name (though if my memory serves me correctly, she was ignorant to it being a band), and felt it insensitive toward people struggling with thoughts of suicide.

Why bring up this little story?  Because it reminds me that what we see on the outside is not always as it is on the inside.  Oh heck, I’ll keep it personal…I will use the “I” instead of the “we”–what I see on the outside…

I am reminded that what I see outwardly (on or of a person), is not necessarily the true story at hand.  Just as above, the nurse knew nothing of Cole having a hemorrhaging and malignant brain tumor which was on the brink of changing the course of his life forever.  All she “knew” came from what she saw.  And what she saw was the ‘Suicidal Tendencies’ t-shirt.  Well I have to confess, after her diatribe I was slightly embarrassed, as his mother, at the inconsiderate suggestion she had now pointed out.  Embarrassed because I hadn’t considered the band name in the literal, for I knew it as a musical ensemble–if you can call the young (well not so young anymore) lads “musical”.  Anyway, I was embarrassed but at the same time irritated that she was lecturing my sick child.  I suppose you could say it was a ‘No Win’ situation, for she was judging Cole by his t-shirt and I was judging her for her condescension.

Bottom line…the old adage “you can’t judge a book by its cover” rings true!  And with that sentiment in tow, Cole looks healthy on the outside yet his insides are problematic.  So much so that him being at the camp in Oregon did not work out.  And with, yet another trip to an ER, he ended up coming home early–without having stepped foot upon the river in which he had hoped to navigate via kayak.  And now the mystery of his internal affairs has got him quite down.  No, he isn’t presently walking about with his ‘Suicidal Tendencies’ shirt on.  Although its message is probably more fitting to the time and might no longer provoke the angst of an attending nurse.

http://en.wikipedia.org/wiki/Suicidal_Tendencies

 

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Risk Of

23 Jun

The other day, when I accompanied Cole (my disabled son) to the airport to fly to Oregon for a white water kayaking experience, I had the daunting task of taking my hands off his care and entrusting his well being to himself.  …Please take a moment to pause at this sentence and consider that I am a mother, who loves her son.  Period.

Pause, pause, pause, pause.

I was standing next to Cole at the Jet Blue gate, while he was sitting in a wheelchair holding his USMC backpack and his cane.  He was awaiting the escort who would take him to the taxiing jet.  When the escort arrived, Cole was juggling his boarding pass along with the other two items mentioned.  I found myself ready and eager to assist with suggestions for a more efficient and safe ride to the plane EXCEPT, the USMC emblem on the pack reminded me of who my son is and who he isn’t.

He is a capable and experienced human being.  He is not a feeble unaware teenaged child.  He is a burgeoning man who has several travel experiences, without his mommy and daddy, under his belt.  He is not without knowledge of how to hold a ticket, backpack, and cane while being escorted via wheelchair through corridors–after all, he traveled to Nicaragua in January just after having had an eye surgery!  He is his own being.  He is not mine.

As I caught myself and halted my intrusive actions, I waved goodbye and watched him pass through the door with himself as his advocate and a stranger for an escort.  I turned toward the exit and coaxed myself through the door with the above reminders guiding my every step back to the parked car.  Had Cole been underage, I would have stayed until the airplane lifted off the ground.  But again, he is not that little boy any more, so I kept walking.  In my journey to the roof top of the parking structure I reminisced about the last email sent to us from the camp Cole was off to (www.firstdescents.org).  It was an email with a waiver attached that was mandatory he sign in order to attend.  It was a “Risk Of…” waiver.  Essentially, as you can fathom with a white water kayak camp, the waiver covered any and all possible risks of injury, illness, and potential death.  He had to sign his life away in order to live.  OK, that was a bit of a dramatic statement, but it works so I’ll leave it be.

Now at my car, I sat a moment in the silence ever so present due to the vacancy of the passenger seat.  And the idea of “risk of..” kept rolling over and over within my mind.  At that moment I wanted to express a profound prayer on my son’s behalf, but “risk of, risk of, risk of…” kept me from being able to land on continual thoughts which could possibly formulate into a petition to The Father to benefit my son.  And then I finally realized, “Yes, there is a ‘risk of’.  But that is a risk we all have to take, every day of our lives.  And Cole, fully aware, was interested in experiencing life despite the known perils.”  With the calm now present within my soul which came from the acceptance of the statement, I was ready to formulate a prayer.

“Lord, I pray Cole will have a good time.  And Lord, if he dies, I pray he dies happy…amen.”

I then turned on the car, drove out of the structure, and left the area before the plane took off.  Knowing full well the risks of the day, the hour, the moment, and the future.  Risks I’m willing to take and be a part of.  It is just plain old living.  Nothing new, no epiphany, just plain ‘ol livin’.

Cole called this morning.  He hasn’t yet been on the white water or in the kayak.  He has been sick to his stomach and very aware he is the only camper who is challenged physically, to the degree he is.  I handed the phone to my loving husband and walked away.  His dad gave him a pep talk over the phone and I am giving myself one still…

“Risk of, Rivka.  …risk of!”

 

 

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