Tag Archives: Crohn’s


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.

Saying Goodbye

20 Sep

I have decided (well if I’m honest I’ve known for quite a while) that I do not like saying “Goodbye” to people I love.  In fact you will find that I maintain relationships with people, if I can, for a lifetime.  By relationship I mean, heart ties.  For example, Candy Edman is a subscriber to this post.  I haven’t seen Candy for several years, but her family and ours have remained tied to each other by way of love, prayer, and interest (and maybe a broken toilet or two–haha, inside joke).  I have family, direct bloodlines, that are with me in this way as well.  We live on opposite ends of the coast, or in different countries, yet they are in my heart as if we lived closer.  Why bring this subject up?  I will tell you…

Last night I received a call that my mother had taken my sister, Leah, to the ER.  Leah was in excruciating abdominal pain which painkillers were unable to mask.  Now my rational mind would tell me the circumstance is related to a flare up of her Crohn’s disease.  However, rational wasn’t working its magic for me last night.  You see my father went into the hospital about 20 years ago in pain and with a distended abdomen.  He never came out.  He was riddled with cancer and had ignored the symptoms long enough that by the time conclusions were made from his in-patient testings, he had passed away.  So last night I kept hoping that it wasn’t cancer.  And while we (me on the phone and her in the hospital in northern California) anxiously awaited a cat scan and blood test results, my mind and heart were heavily facing the fear of saying goodbye.  Of course I measured the weight of those thoughts against faith and prayer, which does help keep one from putting the cart before the horse.  However, I was again faced with my disinterest in goodbyes.  And because of that, I hope you all outlive me!  You see I believe in Heaven and I know that is where I am going.  I have no fear of my own death, nor the death of most of those I love (as far as where they are going).  Oh but having to live with the void of someone so significant is abhorrible.  I know I can do it, I’ve done it many a times.  But I just don’t want to!  Now this is not a letter of suicide by any means-Please Don’t Be Alarmed!!!  This is merely an expression of my inner reality; if I didn’t have this blog I wouldn’t even write it down.

There are other forms of “goodbye” I find difficult to deal with, such as the major transitions of life.  My daughter, Esther, is fast approaching 16 years of age.  I am already witnessing the natural progression of her maturation and therefore disconnect from the mother-father-daughter tie.  She is so looking forward to having her driver’s license.  And her car sits in our driveway with its enticing call to a new freedom.  It’s natural, I know.  I went through it, and I have raised both of my children to think independently.  But I still don’t like it.  She is my baby, though she wore red lipstick to school today.  She is my muse, though she consults me less regarding style.  She is my companion, though her friends are fast replacing me.  She is mine, though she is not.

So you see, my sister can’t go into the hospital for pain without me carrying on internally over deeply felt emotions that I manage to sequester most of the time.  No, I contemplate those I love, like, and miss.  I want Heaven now, though I will wait my turn.  Leah is, as I type, undergoing gallbladder removal surgery.  It wasn’t Crohn’s afterall.  She will be fine, and I am grateful.  Now I have to figure out how to gracefully allow my daughter the freedom to grow…

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