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.