For a moment, you are in absolute bliss. You are a link on the chain of the eternal, in a hope-saturated place you will later recall as oxytocin-induced ecstasy, but just for a moment. There are moments before your newborn son is taken from you for blood work, because he looks “suspicious,” that are etched in your mind. There are moments after the diagnosis is given, just as clear. They are only small stitches in the tapestry of a life, but like lies, it is in the small ones our stories are told, in omissions and with emphasis. Yours will be defined by moments like this.
DNA tests later confirm what is evident with one look at your son’s face: a genetic disorder, never to be named, only qualified in twenty missing genes on Chromosome 13. The doctor tells you that without testing he can’t tell you what is wrong, but something is wrong. You immediately think of Corky on Life Goes On, and the March of Dimes Telethon you used to watch at your grandmother’s. You think of the greeter with his left leg dragging at the Walmart on MaeAnne Avenue, of early death, of the word “retarded.” You think of pain.
You understand something was born and died at the same moment, something you dreamt and hoped for, then lost before you found it. Your life narrows around a few black and white words on the chart, a diagnosis, a set of limitations, a loss. At once, you have become an existential crisis and a biological imperative. You stare at your small son’s face, and you are lost and found in all it means to be this particular child’s mother. In the space of a few thousand rapid fire synapses, you have become a dependent clause, forever to be only as happy as your saddest child.
James Watson and Francis Crick are credited with discovering the structure of DNA, the building blocks of life. They are scientific heroes, these two, if you don’t believe they essentially stole their model from their colleague, Rosalind Franklin, and never gave her credit. Let’s just start with the premise that they alone changed history. This is the easiest story to tell, and historical stories about women are always about the leading men, until they’re not.
Watson and Crick met at the Cavendish Laboratory in Cambridge when Watson was a twenty-three-year-old graduate student, and Crick a thirty-something professor. They were both well-respected scientists in their own right, and they hit it off immediately, combusting into something incredible. They worked side by side for thousands of hours, mapping complex relationships, angles and interactions between chemical bonds before they realized their breakthrough. Crick later called their mission a “mad pursuit,” and that it was. They raced other scientists across the world to describe DNA’s structure and functionality, scrambling to solve life. This was the Golden Age of molecular biology, the early 1950s to 1966, when genetic code was mapped out and Watson and Crick were out in front. Their discoveries would lay the groundwork for genetics research, gene therapy, forensics and cloning. Watson and Crick’s partnership was nothing short of legendary. Even cosmically fueled partnerships like theirs are fraught though, a tangled mess of stimulus and human response, a dance of personality and destiny as complex as the politics of the Bolshoi.
The story goes that when a colleague, Maurice Wilkins, showed Watson a clear X-ray of DNA taken by Rosalind Franklin, Watson’s jaw fell wide open in disbelief. He saw, for the first time, what DNA must look like. What he saw, in Franklin’s Photo 51 was life, under glass. That two-dimensional image reached out to Watson’s imagination, in all its glorious complexity and efficient simplicity, and he was changed in an instant. And so was life as we know it, or at least life as we understood it to be. Watson and Crick unveiled the codex of As, Ts, Gs and Cs that make up our DNA in 1953. They decoded our makeup and described the whole of our being in only four letters arranged in myriad sequences in every cell in our bodies. They explained who we are in just four letters, which stand in for the chemicals to which we owe our existence.
Watson and Crick became famous overnight, their names to be said together, forever, like a mantra. It was like one name depended on the other for relevance and context and could not be said alone. Watson and Crick, Crick and Watson, a marriage of the minds, a scientific exaltation, perfect math, a promise.
You can’t think of the names of any genetic disorders in the early days after your son is born. Of course, you never really paid attention to them before, why would you? DNA was something you plotted on a Punnett square in high school, not the imprint of a fragile future replicated in your baby’s trillions of cells. You don’t know how this happened, you aren’t sure of all the ramifications, but you feel them—future challenges in present tense.
You begin to study DNA with a ruthless rejection of sentimentality and a drive to know how this happened and what you need to do next. You speed through books on heredity and genetic mutations and de novo deletions. You become well versed in genetic translocations, recombinations and base substitutions. You find a light at the end of the tunnel of epigenetics and the ability to turn on and off your genes, to change your genetic phenotype like you change your mind. You plot the developmental timeline of brain and body in utero, looking for the moment your son lost those twenty precious genes.
The pediatrician tells you, “Most people are missing four genes, your son is just missing more. It’s a microdeletion,” He is sure he is accurate, but he grossly mischaracterizes the import of the missing code with the term “micro.” Life should be more resilient to the absence of twenty meager genes, but there are lifetimes of potential in each one. Genes, those transducers of human potential, are like pure gold. They are valuable even in the smallest of increments. They are the most personal of all scientific nomenclature, informing our nature from their fragile perch on slim strands of chromosomal material.
“No one else has the same deletion your son has!” the geneticist later tells you, excited. “His deletion is the first on the genome map—the first!”
You might be pushing the boundaries of science with your son’s faulty Chromosome 13, but you don’t have a sense of anything other than your own incredulity in the face of her scientific glee.
“How did this happen?”
She is calm as she tells you, “It was an accident. It is not something you carry.”
You will carry it always, you know this, but you are silent. Even doctors get things wrong sometimes. Your womb carried this child and left him fragile. You will be judged for this, most harshly by yourself.
You and your child are left sitting in the doctor’s office searching each other’s faces for the answers. The two of you are a call and return of unrequited hope and undaunted love, the space between you as resonant as the energy arcing toward Tesla’s coil. Is it your son’s future heartache you feel in your gut or your own? Are we ever clear on whose pain we feel when we hurt anyway? It’s our connection points that bear the strain between us, you realize, never the parts we fully own ourselves. It is where we are attached that we bleed, spent life force and DNA.
The model of DNA that Crick and Watson built was simple and elegant, a functional ode to the chemically bonded architecture of our existence. In those two strands of aspiring nucleotides we find our humble beginnings and the foreshadowing of our ends, past and prologue entwined around each other like a hydra. We find we are more similar than different, sharing 99% of the same DNA as other humans. With this understanding we can recognize our genetic legacies to each other in our faces, hands and feet. We don’t have to wonder how we came to be anymore. We have models and chemicals and DNA to explain the inexplicable. We find solace in science, as if science were God and God were irrelevant.
How did it feel to build life in three dimensions for the very first time, to hold it as surely as we do in our cells? Crick, for one, was so excited he announced the discovery by rushing into a local pub and shouting, “We have discovered the secret of life!” What was divine became profane in an instant, hung out on slides in a laboratory, unpacked and catalogued like volumes of an ancient library. Swirling, coded atoms, now labeled like Darwin’s specimens, detailing how this, and how that, but never why.
You would think after all that science Watson and Crick conjured up together they would be attached for life, like the covalent bonds in their double helix, but they weren’t. They fell out, like so many colleagues, and went their own ways. It didn’t help that Watson wrote a biography that painted Crick in an unsavory light. It seems so petty, disrespectful even, to behave this way in the face of a scientific miracle, but they were as human as anyone. Amidst allegations and rumor about who discovered what and when, and Rosalind Franklin’s true role in the discovery, Watson and Crick split like atoms under pressure.
Crick abandoned genetics all together. Surely, he was sick of it all: the drama and the allegations, the deconstruction of who he and Watson were together when they illuminated the future. Crick left the field he revolutionized and went into neurobiology. Was there simply too much futility in all those As, Ts, Gs and Cs that could never be rearranged in the body? Did they make him feel impotent or rudderless, reminding him we are all written, in so many ways, before we are born? The brain must have felt more optimistic to Crick, in its plastic willingness to be convinced and coaxed to change. He must have seen more potential in that wrinkled source of choice and free will. Perhaps he found more hope in adaptation and accommodation than prescription. Whatever the reason, Crick jumped into his future and never looked back, helixes and nucleotides and Watson’s indelible biography swirling behind him.
Even though he lives with you, your husband is largely absent in your lives until you have a daughter three years after your son. When she is born, he returns to you like a god descending to admire his handiwork. Does this child fulfill him in ways your son cannot? Will she fulfill you in other ways as well? There has been fighting and yelling and crying and jags of desolation ridden out with a baby on your hip. You are too tired to fight on two fronts, and you accept him back after each argument with open arms. You need the basics from him to survive, like food and water, late-night trips to the pharmacy and the trash taken out. Everything is just harder on your own. Your motivation and momentum come from your son’s cries and your ability to soothe you both and to grow. You are both surviving and thriving. You have these children and you have your own will. Another daughter follows four years later, and your three little ones are growing up now, together. You are a mother.
You learn to enjoy life most in the smallest moments, those moments not anchored to accomplishments and ability or another’s perception. These are relative goals, and you now prefer the concrete joys of laughter at bedtime and stories over breakfast to comparisons and attainment. You find joy in the firsts that come a little later with your son, but you enjoy them even more when they do come—riding a bike at eight, washing his own hair at fourteen, dancing with a girl at sixteen. Your son is verbal, but not like most kids, and he does not read or write, even as a teenager. You narrate his life for him, bringing back details from your voyages into the world outside your home, like John James Audubon and his flora and fauna. You discover and catalogue and store for your son what he cannot. You paint his world complete in words and stories, texture and tone, living in full relief.
Once your son hits seventeen, he is more independent, which means you are more independent, too. All those big scares like cleft palates and heart problems, all those “midline defects,” have mostly resolved, and you resolve to leave them in the past. Now you worry about dinner and bath time and teaching him to fold laundry and turn on the stove. He is seventeen, but he acts like he is seven. He will live with you for the rest of your life, you have already accepted this. You don’t mind the deficits or the age equivalent on the IQ chart as much as you thought you would. You were never all that good at math anyway, and numbers aren’t your friends. Math and science have only described and quantified your sorrow; they have never solved anything. You had to learn, on your own, that there was no satisfactory answer to “why me?” other than “why not me?”
“I don’t know how you are this happy when the worst you could ever imagine has happened,” your friend says one day when you are talking about your son.
You tell her, “You lack imagination. There is always worse that could happen.”
You are reminded of how fragile your hard-earned peace is one day when you and your kids drop your young nieces off at their house after a sleepover with your daughters. Your seventeen-year-old nephew opens the door.
“Mom is out shopping,” he says. “I’ll watch the girls until she gets home.” You say goodbye and you drive home and drop your kids off with your husband. You tell him you have to go back out. You drive to the bar down the street and drink vodka martinis straight up until you are blind drunk, and you tell the stranger sitting next to you what brought you to the bar that night.
“My nephew answered the door,” you say, beginning to slur.
He nurses a pale ale and says, “So what?”
“My son will never answer the door and say he is babysitting his younger sisters. You get that? He will never be able to babysit his younger sisters. They are the ones babysitting him and he is the oldest.” You look at him like he should get it, like the truth is right there in front of him.
“Man, you are killing my high,” he says as he settles his tab and gets up to leave. “I gotta go, this is too much for me to hear right now.”
This is the moment you become something you hate. You let someone see you have been wounded by all this, that you too are fragile. You go into the bathroom at the bar, gag yourself until you vomit and then drive home. You stop drinking, forever, you say, and you pick yourself up and patch your perspective back together. You have spent years toughening up and growing a thick skin, but this carries you away like a mudslide. You weren’t prepared when you opened that door. You forgot, for a moment, your own reality.
A few days later you explain to a friend, “It had nothing to do with my son’s disability or anything like that. It was the way that guy said, ‘You are killing my high, I can’t hear that right now.’ It was that, not my son. Never him. Jesus. Never him that hurt me.”
God and genetics never offered your son a choice, and Watson and Crick never promised you anything.
You will be damned if your child’s narrative includes any sadness on your part, or wishing things were different. You will negate him if you do this, if you define your sadness by him and in relation to him. You won’t let your love for him make him instrumental, something to be valued for what he means to you, and not just for who he is. You will steal his identity away with your inability to see things as they are, and instead to imagine them as you would. You will not do this. It’s that simple. It stops right here.
This is the thing you must get right for your son, the words you string together about your life and his. You owe him this much, this crafting of personhood and value inside of—and despite—his limited vocabulary. There is a responsibility to earn this for him, the moral and ethical standing of a man. The one thing you can give him, if not good genetics, is a love without asking “what if?” and “why me?” The one goddam thing.
Watson, Crick, and Wilkins were awarded the Nobel Prize in Medicine in 1962 with little mention of Rosalind Franklin. Franklin herself had died of ovarian cancer four years earlier, and the prize could not be awarded to anyone posthumously, so she was never fully recognized for her critical role. She was the foundation of the edifice of our knowledge about DNA, but she was missing on the podium. She had become a footnote in an encyclopedia entry, but she was not acknowledged for who she truly was. What a shame, people said, like it was a simple oversight, something that just happened. There was no discussion, at the time, of the conscious choices made by those three huge brains standing on the podium not to tell the world about Rosalind Franklin.
Did Watson and Crick wonder about what part they played in writing her destiny, constructing their lives and their legacies on her work and failing to mention it? Shouldn’t they have labeled the massive contribution of their female colleague with even as much care as their maps of As, Ts, Gs and Cs? They could explain life itself, but they never explained this willful neglect of an accurate narrative.
It wasn’t until years later that people began to write Franklin’s story for her and to acknowledge the immensity of the role she played in DNA’s discovery. Eventually even Crick and Watson, who had become famous around the world, spoke to the breakthroughs she made that led to their own. Did they think it was just too difficult to give her the credit she deserved, as though it would detract from DNA itself? It is only As, Ts, Gs and Cs, after all, that make up DNA, and narrative requires the use of the entire arsenal of letters at our disposal. It requires something profoundly and uniquely human to tell each other’s stories well, to create spaces to hold our humanity, like the helix holds our heredity. They simply weren’t up to the task.
He has changed you, over time, this little man. You see art now, in imperfection, and a full life in the spaces between the skill sets. You think of the future as a ruthlessly hopeful aspiration rather than a linear proposition, so you work harder at getting today right. You imagine more, you ask for little and you accept less. We are only as free as we are allowed to be by others, and you will allow your son nothing less than all the freedom the bond between you can handle. You experienced a rapid evolution the moment you laid eyes on him, and you continue to grow into the job of being his mother.
Like the double helix you obsessed over for years, you are as wound around your son as he is wound around you. Your identity cannot be untangled from his, making you as dependent as he is, in that sense. If you created him physically, he has created you emotionally. Your hopeful optimism, like the missing information on his thirteenth chromosome, has never been fully recovered but you have learned to identify as an optimist without it. The cracks in the firmament of your faith have been patched up with time and a resilience born of necessity, painted in blood and mother’s milk in protest, more durable than hope. You are held together by something that looks a lot like acceptance, although you would never admit as much.
“Between stimulus and response lies choice,” your dad tells you one particularly rough day, paraphrasing Frankyl. You carry this lonely line with you like a talisman, a token, a reservoir of what you still control that you will spend down over a lifetime of choices small and large. Potential may be the most valuable human currency, but the black market of your hope and sanity runs on choice, on your ability to choose how to think about all of this.
God and genetics never offered your son a choice, and Watson and Crick never promised you anything. Those synapses that fire your body upright each day, those blessed reassurances in the sound of breathing and heartbeats, those are the things you believe in these days. Crick and Watson said they solved the mystery of life, but even they could not explain our ability to live life fully, despite life itself. They couldn’t define that will to meaning that exists outside of, and yet still within our DNA, even with all that science.
Watson and Crick were attached for life, one name predicating the other, and Rosalind Franklin predicating them still, even after they had all split apart. You used to worship them, in a way, for their ability to make sense out of life, but you don’t think of them so much anymore. Like the rest of us mere mortals, even with all that cosmic and chemical horsepower between them, they were long on the how and short on the why.
Cyndy Cendagorta is working on a collection of short stories about broken things, including bodies, children, friendship, faith, and love. She runs a policy consulting company that specializes in social innovation, and she is a special needs mother and advocate. Cyndy holds an MA in Political Science from Washington State University and is a past Women’s Research and Education Institute Fellow. She lives in Reno, NV, with her husband and three children.