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Spark Notes

10 Aug

Today’s title, ‘Spark Notes’, has been patiently awaiting my attention while in the holding cell of my “drafts” folder.  In fact, my opportunity and drive to write, this week, has been somewhat prolific.  And I say, “take it while I can get it,” because I expect next week to have to linger on the tails of my past three postings (this one included).  I have even had time this week to peruse a few blogs I have been introduced to over the past year.  I feel much accomplished, as far as having invested in a few writings and readings that give me a little spark.  AAAhhhh, my segue into the title at hand.  What is your spark?  What is mine?

Now obviously I cannot answer the question for you.  But I can share a bit of the sparks in my life, and in that, in the lives of my nuclear family.

For me, dyed black hair is a pleasure I enjoy.  And if I encounter true, naturally black hair, elation wells up within me.  I began dying my hair black back in high school.  My then boyfriend (who happens to now be my husband) and I bought a bottle of some sort of “cover the gray” black rinse and we applied it, each to the other, without the use of protective gloves (uh oh, in the category of teenagers this could sound like a covert innuendo–I promise it is not).  And because we used our skin exposed hands for the job, we consequently went through the next month with the evidence not only imprinted onto each of our strands of hair, but also emanating from every skin pore on the palm of our hands.  The box said, “washes out with several shampoo’s,” and though our hands recovered after a months time, my long tresses did not.  In fact two years after the occasion, on my wedding day, my long hair was sporting a half and half d00…the top half naturally brown and the bottom half unnaturally black.  My husband, on the other hand, had shaved his hair off long before our betrothal.  Now in between that time and now I have experimented with reds and blondes and blacks.  I like the reds though I don’t like them with my skin tone.  Blonde, I am just not.  So black it is for me.  And though it began as a love affair with the color, it has sadly become my battle cry against father time and his minions in white.

The Black Bottle

Naturally, unnaturally beautiful!

I realize that sharing hair dye as one of my “sparks” is a little weak…at face value.  But truly my greatest spark comes from humor.  Humor in all things, aging included.  And in consideration of the humorous undertone of the black bottle bit, you can better understand my spark.  I am also fueled by that which fuels my husband and children.  I find their happiness to simultaneously fill my cup (this is a very weird sentence structure–any help on it, if it indeed is incorrectly written, is most appreciated).

Thus I will indulge my fancy further by writing about the newest spark in the Bent clan…

A sailboat.  Yep, a 25ft fiberglass hull vessel.  My husband and son have ventured into this purchase together (one has the money and the other has the brawn–read my past post to guess which is which); and it is through their adventurous spirit the rest of us (my daughter Esther, and I) become sailors.

As most of the readers of this blog know, Cole has suffered a very significant loss in his quality of life.  He was a strapping and strong young United States Marine, prior to having his brain tumor removed.  And now he is dependent upon others due to the physical impairments which are his.  Result of cranial nerve damage from having a growth on his brain stem removed (death was the alternate option).  In all reality, we are so very fortunate to have him alive and in as good of shape as he is in.  We know that, but he doesn’t.  He struggles so much–every day.  Every night.  And so becoming an owner of a boat, alongside his dad, is a step in the right direction.  The hope is that there will be a piece of flint lurking about his new adventures…it will find its way to the concrete of his soul and scrape against it.   And when it does, I pray it will create a spark which will turn into a roaring fire.  A fire within my son’s being that will give him back purpose, feeling, and desire.  I do believe G-d can do this with a little 25 foot sailboat.  I just don’t know when.

Brian and Cole

Gilligan and the Skipper

Cole catching a fish

Fishing off the stern

Yet in the meantime the four of us are enjoying the open seas, the calm of the harbor, and each other…at least we are making every effort in this direction (I am prone to seasickness of all things).  We have yet to spend the night on her, but these warm summer nights are like a siren’s call.  I’m sure it won’t be long before we yield.

Esther at the bow

Ahoy Matey! Esther catching some sea air

My last two posts (‘Shut the Hell Up!’ and ‘Betwixt, Bothered, and Be-Whining‘) came fiercely and quickly as the intervention of my cathartic pen was needed for the health of my psyche.  But this post, this patiently awaiting its time, post…this is my spark note.  Please feel free to share yours.

Brian the Skipper, Cole as Gilligan

Just sit right back and you’ll hear a tale, A tale of a fateful trip
That started from this tropic port
Aboard this tiny ship.
The mate was a mighty sailing man,
The skipper brave and sure….
source: http://www.lyricsondemand.com/tvthemes/gilligansislandlyrics.html

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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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