Archive | July, 2012


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.

Sitting With Otis

22 Jul

I am sitting here in the Oakland (California) airport awaiting my flight to board.  The song that keeps running through my head is Otis Redding’s, “Dock of the Bay”.  I came to northern California this time for a joyous occasion.  My god-sister had her second son and my stay this past week involved taking on “baby holding shifts” to help her either get some much needed shut-eye and rest, or give her extra time with her toddler to help him with the adjustment of having to share his mommy.  I confess, I am good and tired!  I can honestly say, “good and tired” because this kind of sleep deprived state comes from the elation of holding my nephew into the wee hours of the morning.  Yep, my shift was the 11:00p.m. to 3:00a.m. window.  It was my pleasure to shimmy, shake, rock, bounce, walk, and sing my little 10 day old nephew to sleep and hold him until his stomach announced the change of the guard.  So while I am showcasing some serious bags under my eyes, I assure you they represent a contented joy within me for I was here to experience the, all too fleeting, stage of the precious new born.

Before dropping me off at the concrete curb of the airport, my little sis wanted to capitalize on my presence for one last errand.  She needed to hit the Gymboree Outlet Store.  And with a few moments to spare, we were able to stop at Starbucks for our final departing shot of espresso (only today I required 3 shots!).  Now I don’t know if it is because I am lacking sleep or if it is genuine emotion which comes from a profound realization of how quickly time flies by, but I shed quite a few tears while sipping my java.  My nephew on my shoulder and a Starbucks napkin doubling as kleenex, the thought of leaving my little baby kept the water works flowing freely. A pain, I assure you…especially for a girl (me) who is not fond of crying.  But crying I did and I said my goodbyes while in the coffee shop so that I could dash away emotionally guarded and ready to step into the security mess of the airport standards.  By the way, since when are pilots allowed to show tattoos?  …just asking as one with some serious ink walks by.

My plane boards in 5 minutes…time to seal this memory and get in line.  Nope, it actually boards now…just heard my name called over the loud speaker!


As It Should Be

16 Jul

I have several favorite movies; some of which are:  Guys and Dolls, Breakfast at Tiffany’s, Singing in the Rain, Disney’s Sleeping Beauty, Snow White and Melody Time, Roman Holiday, Mao’s Last Dancer, and most recently, Made in Dagenham.  It is the last of my favorites that I will relate to here.

The focal point of the movie is to showcase the change of infrastructure in England for the Ford Motors factory women in the early 1970’s.  Besides the “eye candy” of the period piece, the bright color hues, and the intriguing storyline filled with multilayered characters, the movie sends forth the underlying message of basic human rights.  In fact, in all of the movie, there is one scene between wife and husband that stood out to me in particular.  It is an exchange where the husband is pleading with his wife for a little “understanding”.  However, the basis of his argument is rooted in character traits such as, being a good provider for she and the children, not being a drunkard, and being nice to his wife, etc.  All of which, while in a heat-filled and tense conversation, can emulate a firm foundation for a case in point, but are ripped of their pseudo stability when the wife points out that the character traits he mentioned are simply, “as it should be”.  Nothing more.  And she goes on to explain to him that basic rights are not a privilege…

I’ve actually found the clip of the movie and included it in this post.  A feat I am quite proud of because I am a bit of a novice when it comes to navigating my way through “Youtube”.

At any rate, the theme of “As It Should Be” runs through my mind frequently.  Of course, in light of a domestic violent situation, it is difficult to Not consider how the absence of the basic rights of a woman and child affect the infrastructure of the family.  It is obvious.  However, my focus here is really to stay in the realm of the healthy family and how we interact with one another, as showcased in the scene from the movie Made in Dagenham.

For example, would it be right of me to consider that I deserve a special reward because I have cleaned the kitchen after preparing and cooking a meal?  Is it right of my husband to think he is an extraordinary human being because he provides a means for his family?  Am I exceptional because I take the time to nurture my children and teach them to be good citizens?  Do my children deserve extra (note the word “extra” here…the word implies above the usual…I am not suggesting it wrong to acknowledge good behavior) pats to their self esteem because they have enacted polite manners within interactions?  Do I deserve an award for taking care of my family, does my husband, do you?  Of course you can guess my answer to these questions is, “no”.  Special recognition for doling out the basic does not make sense.  Not to say that having a sense of appreciation for the basic is bad.  Not at all.  Actually, appreciation in and of itself, for the basic, is “As It Should Be.”

It feels abrupt for me to stop the conversation here, for I know I could continue on.  And I just might in another post.  However, it is time for me to get to the kitchen and begin clanging some dishes together which sends out the signal, to my family, that breakfast is in the making.  So let us just consider this conversation opener as a teaser, a little “food for thought” to kick start a new week.  And if nothing more, an introduction to one of my favorite movies.  May peace be with you, as it should be.  🙂


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