The drive home was a tough one. We knew beforehand that consenting to the test may have devastating results. But we also knew that it might hold the key to helping us help Mark. Knowing more about what we were dealing with would help us seek out and provide the very best care and intervention for Mark both now and in the future. This benefit seemed to outweigh the inherit emotional risks in profound ways. But nothing—nothing—could’ve prepared us for the results we actually received.
Jason intentionally played music over the car speakers that Mark would enjoy, hoping that it would provide ample distraction for him and enough auditory privacy for us. We rehashed the conversation we’d just had with the doctor in hushed tones.
“But wait… Did I really understand what the doctor said?”
“So—again—they know something’s wrong… They just don’t know exactly what?!”
“The doctor said the test results were ‘profound.’ But what does that actually mean?”
My attention flip-flopped between Jason and Mark. Too many doctor visits, hospital stays and medical testing procedures to count had made me quite adept at switching mental gears quickly and easily.
“You hungry?” I said I as flipped down my visor to make eye contact with Mark in the mirror. “Want to go get some lunch?”
“I go school today?” he answered with a worried look. Mark loved school. Sadly, though, his abilities didn’t quite match his passion for learning. His low IQ and ongoing challenges with memory loss betrayed all his best efforts.
“No, Honey. We’re still a long way from school. Remember how far we drove to get up here?”
“Oh yeah,” Mark said as his eyes dropped to my scarf. It was now scrunched up in a ball sitting in his lap. “Yeah, I hungry…”
“So, what do we do now?” I asked Jason as I flipped up the visor and turned up the music. “Are we just supposed to muddle through on our own while we wait for the next shoe to drop?”
“Yep,” Jason answered bluntly. “That’s exactly what we do.”
Granted, we had no medical history to draw from. Mark was adopted internationally. So, we had no familial background to comb through for clues. But fortunately, science had stepped in to fill in some of these gaps. With the advent of genetic testing and the growing knowledge about the human genome, all it took was a simple swab of Mark’s inner cheek to learn a great deal more about what exactly made Mark’s little body work—and what wasn’t working.
The biochemical geneticist hadn’t given us the clear answers we’d hoped for. He’d only given us new questions and even more reasons to worry. But his persistence had given us something. Where the pediatrician had previously given up, this doctor was willing to trudge through the murky unknown with us. Science couldn’t answer the question of exactly what was wrong—at least not yet. But it could answer the question of why. And this has helped.
Suddenly, we had another piece of the puzzle. It didn’t complete the whole picture. But it helped to fill in one of the gaping holes. It told part of the story we were trying to piece together. And, frankly, this is something that religion and science have strikingly in common. Both seek to find answers, piecing together bits of information to help us make sense of the world around us and our journey through it.
Somewhere along the line, we’ve been conditioned to believe that science and spirituality must be mutually exclusive. We must choose one or the other, either or. We can’t have both. But this has bamboozled us into accepting only a portion of the full perspective. If we’re amenable to living with—and continuing to ask—questions that may linger far longer than we want, if we’re capable of abiding where things aren’t always crystal clear, then we remain fully open to all the answers, including those we least expect—even those we can’t entirely wrap our limited human brains around. Only then are we completely open to perceiving all the possibilities.
When science revealed the truth behind Mark’s genetic issues, I didn’t want to believe it. It was ugly. It reeked of stigma. To accept it, forced me to acknowledge a bleak future filled with pain and likely riddled with struggles. But it also begged a very important question: Did I want what was easy to accept or did I want the truth?
The dialogue between science and religion is much the same. It’s not easy. Our initial reaction may be to pit one against the other. It’s difficult to blend what may only seem at odds. Often our instincts direct us to seek one set of answers from religion and an entirely different kind from science. And this works well for many. But I believe an even greater possibility exists for those who are willing to rest peacefully in the middle, where the lines of absolutes haven’t already boxed us in. When we allow science and the spiritual to overlap and intersect, the paradoxical nature of each may prove to be their greatest strength. The truth might very well prove be that the sum of science and spirit is far greater than either part on its own.
It’s from deep within this beautiful yet unbalanced union that I continue to care for Mark. I make decisions informed by science, yet tempered by compassion. I turn to doctors for help, but remain anchored by the truth that some answers are still (and may forever be) simply beyond our grasp. I use the concrete facts about Mark’s genetic disorders to temper my own emotional reactions, too. It’s difficult to have the same conversation over and over again. It’s tiring to have to think for another person 24/7. And my mind grows weary of having to constantly keep track of how much protein Mark consumes at each meal, careful to not exceed his maximum daily allowance of 15 grams. Yet the answers science has given me enables me to respond rather than react, to feel rather than just emote. Knowing why Mark struggles the way he does softens my impulsive—but very human—first reaction.