Will He Have My Eyes?

Will He Have My Eyes?

WO Will He Have My Eyes ART

By Kelley Clink

It’s two in the morning. My vision blurs from lack of sleep. The lamp in the corner washes the room in soft, amber light. It shimmers in my son’s wide-open eyes, which gaze up at me. His small, hot hand curls against my chest. We rock in the glider. We rock and rock. He is quiet, full and heavy, warm in my arms.

Is this real? I ask myself. It’s taken so long to get here that I still can’t quite believe it.

***

I never thought much about having children before I got married. I sort of assumed it was something I’d do, eventually, but I wasn’t one of those women who felt like I was meant to be a mother. I didn’t even particularly like kids. But I loved my husband deeply, and thought it might be kind of fun to make a person with him.

To be fair, I was 21 years old at the time.

About three years into our marriage, when I was 24 and my husband was 26, we started to consider the prospect more seriously. I’d just finished graduate school. There was plenty of time for multiple pregnancies before I turned 30 (my definition of “old” at the time). It all worked out in theory. And that’s all it was: theory. I never once tried to imagine what it would be like to hold my child in my arms. How it would feel to see him smile. It was just the next logical step in a mapped out, middle-class, American adulthood.

Then my brother hanged himself, and the map went up in flames.

***

Matt, my only sibling, was three years younger than I. When we were growing up he was alternately a responsibility, a playmate, and a pain in the ass, and I loved him as if he were a part of me. In a way, he was. He was the only other person on the planet made from the same two people. From the same past.

I was diagnosed with depression at the age of 16. Matt was diagnosed with bipolar disorder at the age of 15. We both attempted suicide by overdose as teenagers. We both survived. We both seemed to even out afterwards, thanks to medications and therapy. We both graduated high school with honors and did well in college. Matt was three weeks away from graduating Phi Beta Kappa from Rutgers when he died. I’d spoken to him earlier in the week. He’d given no indication that anything was wrong.

The suddenness and violence of his exit gutted me. There was anger, anxiety, exhaustion, depression, sadness, fear, guilt. Usually all at the same time. I folded in on myself. Stopped working. Cut off friends. Rarely left the house. Grief was a tarpit and I was a prehistoric animal. I slowly sank, watched life go by, and waited for the tarpit to magically drain or swallow me whole.

But somehow, at the same time I felt removed from life, I was consumed by a desire to create it. The longing was so deep it was painful—an ache for gain that throbbed alongside my loss.

I wasn’t completely naïve. I knew that a child wouldn’t fill the void left by my brother. I knew that nothing would. And anyway, the desire—deep as it was—was nothing but a blip of an atom in a blackhole of fear.

I was terrified that the same pain that had plagued my brother would descend on me. At the time of Matt’s death I’d been on antidepressants for nearly a decade. They’d helped me—but for a while they’d helped him, too. Who was to say they wouldn’t stop working? What if our genes were a crooked double helix, bent on self-destruction? What if my children were like me?

What if they were like him?

Each night the “what ifs” piled up in the dark around me while I lay awake, my eyes sticky-dry, my husband’s even breathing like water torture.

This went on for years.

In the meantime, of course, friends and family members got pregnant. They had their children. They got pregnant again. Every ultrasound photo on Facebook, every card in the mail with a pair of empty baby shoes, waiting, punched all the air from my lungs.

I was stuck in the tarpit. But even though my life wasn’t moving forward in the way I’d thought it would, the way everyone else’s was, I was busy. I was doing the work of grieving. For me that work took the form of writing a book about Matt. Every day I sifted through the blog posts, emails, and stories he’d left behind. Every day I plunged back into my memory. I filled blank page after blank page, trying to make sense of what had happened to him. It was raw and painful, like digging glass splinters out of my heart with my fingers. Two years passed. Three. Four. I turned the dreaded 30 and then some. Finally I finished the book and came up for air. I was done grieving. The tarpit was gone.

But the fear remained.

What exactly was I afraid of? In the first years after Matt’s death I’d thought it was suicide. I’d worried that it was out there, waiting for me—a land mine wired by genes and grief.

It took years (and several therapists), but eventually I understood that despite our shared histories and DNA, my brother’s life had not been my life, and his death didn’t have to be my death.

Once I finished grieving Matt, and trusted my desire to live, I began to see that the fear was rooted in something else. Something deeper. I wasn’t so much afraid of death as I was afraid of love.

Here’s the thing: to open yourself to love, you have to be willing to accept loss. Gut-wrenching, bone-crushing, soul-obliterating loss. After my brother died my mom said things like, “I’d do it all over again, even if I knew how it would turn out. I wouldn’t trade a single second.” Deep in the tarpit, struggling to keep from going completely under, I hadn’t understood. If I had the choice, I’d thought, I would rather have been an only child. Even years later, after I had grieved my brother, after I had accepted his death, the mere possibility of experiencing that kind of pain again tightened my throat.

The heart, though metaphorical, is like any other muscle. Once wounded, it takes time to heal. Once healed, it takes time to rehabilitate.

My heart took her time.

It happened slowly, so slowly, each day a single grain of sand dropping from one side of an hourglass to the other: fear giving way to desire. Other things happened in the meantime. Life. I danced with my friends. I sang karaoke (badly). I saw oceans and countries that my brother would never see. But I began to realize that I carried him with me everywhere I went—knowing him, being a sister to him, had made me who I was, and his death had brought me more than grief. I cried for the years I’d lost, I cried for the uncertainty of it all, but eventually I looked back at the ashes of the map and realized that Matt had given me the gift of deliberateness. I was no longer making choices based on expectations. I was approaching life with open eyes. He’d also given me compassion: for myself and my depression, as well as for others. I was approaching life with a scarred, but open, heart. I realized I would have been a sister to him all over again, even if I knew how it was going to turn out.

Ten years, five months, and seven days after my brother died, my son was born.

***

My son’s eyelids flutter closed. Gradually I slow the glider to a stop, carry him across the room, and lay him gently in his crib.

I see my brother in his face. I see myself, too. But I also see his father, his grandparents, his aunts, uncles, and cousins. Most of the time I don’t see anyone but my son. Just him.

I don’t know who my son will be, what kind of challenges he will face. I do know that he will hear stories about his Uncle Matt’s kindness and humor, his intelligence and passion. He will know that Matt’s illness was a part of who he was, but only part. He will know that my illness is a part of who I am, too. My son will learn that life is hard and beautiful. That love and grief are two sides of the same coin.

I worried for years that my children would be like my brother and me. I want to say that I don’t anymore, but I can’t. No matter the wisdom or joy that has come from my experience, I don’t want my son to suffer. Still, whether or not it involves mental illness, I know he will. He has to. That’s life. I suppose the best thing I can do, the only thing I can do, is to let it happen. To stand by his side, hold his hand when he will let me, and trust that our hearts will heal.

Author’s Note: Next month we will celebrate my son’s first birthday. Parenthood has conjured a host of new fears in addition to the old, but each one is matched by an equal measure of joy. My husband and I hope to be lucky enough to add more children to our family in the near future.

Kelley Clink is a suicide prevention and mental health advocate, and author of the memoir A Different Kind of Same. She lives near Chicago with her husband and son. You can find out more about her at www.kelleyclink.com.

BOOKSPARKS SPEAKS OUT: Join Kelley Clink on World Suicide Prevention Day on September 10. For all sales made on Kelley’s book, A Different Kind of Same on September 10, Kelley will donate 30% of proceeds to the Alliance of Hope for Suicide Loss Survivors. Learn more on how to get involved here.

 

 

What’s in a Gene?

What’s in a Gene?

By Alexis Wolff

whatsinagene“The geneticist is going to look at this and freak,” a woman who introduced herself as Veronica told me as we sat across from one another in her Manhattan office. On the coffee table between us sat my application, which I had been instructed to complete at a desk by the receptionist, even though I’d mailed in an identical one several weeks before. This new application sat opened to a grid where I’d filled in information such as the height, weight, hair color, and eye color of my sister, parents, and maternal grandparents. I left blank the boxes devoted to my paternal grandparents. I’d never met them.

“Let’s try to fill some of this in,” Veronica said, “or else the geneticist is going to have some trouble doing her job.”

“Well,” I apologized, “I’m not sure I know any more than what I put.”

“We can just estimate.”

I shrugged.

“So your dad’s mom,” Veronica continued. “Would you say she was small, average, or large?”

“I have no idea.”

“What would you guess?”

“Medium?”

“Good.”

“And her hair color?”

“Maybe brown?”

And on we went. When we finished, Veronica flipped through the rest of my application, in which I documented my interests and talents, my ethnic heritage, and my personal and family medical histories.

“You’ve got a great profile,” she said, glancing up to look me in the eye. “I could match you in a day.” I supposed that was a compliment.

Veronica put down my application and shifted back a bit on the couch. “So,” she asked, “what made you interested in egg donation?” I hesitated. I knew that I couldn’t tell Veronica the whole truth. My interest dated back a few years to when I was a junior in college and the writer Gay Talese spoke to my English seminar class. The week before, we’d read Talese’s classic profile of Frank Sinatra, which Esquire had recently dubbed “The Greatest Story Ever Told.” We’d sat around the circular oak table discussing specific passages and techniques like peewee league football players watching Super Bowl clips.

A week later, Talese stood before us, wanting to hear about the pieces we intended to write. A sophomore named Lily spoke about the frequent ads in the Yale Daily News promising five-digit payments to egg donors. She said she didn’t understand why a woman would subject herself to such an invasive medical procedure, even for so much money. Talese nodded intently as Lily explained that she planned to interview donors and recipients to understand the process better. When she finished, Talese offered his advice: donate your eggs.

We knew that this kind of first-person participation was a central tenet of New Journalism, yet we chuckled. We were merely students, after all, just toying with the idea of being writers. We loved to read about Talese stalking a sick Sinatra after the singer refused an interview, or abouthim tagging along with members of the notorious Bonanno crime family for his 1971 bestseller, Honor Thy Father, but we wouldn’t have dared try either ourselves, and the thought of donating eggs just to get a good story was preposterous.

Two years later, I’d graduated from college and committed myself to being a writer. I was living in New York City—the same city as Talese, but in a far different world. I’d published a few essays for twenty five or fifty dollars, but professional success was nowhere in sight. As a graduate student with over sixty thousand dollars in debt, and more coming, money was a problem. So when I saw an ad online offering $8,000 for my eggs, I was tempted. I thought of Talese. I could use the money, but more importantly, I could use the story. But I knew I couldn’t tell that to Veronica.

“In college, I always saw ads offering tons of money for egg donors, and I told myself I’d never be a part of that,” I began. “It seemed like they were trying to genetically engineer a perfect child. But I noticed in your ad that recipients know nothing about donors except that they’re healthy and have similar ethnic backgrounds, which makes me think they’re seeking egg donors because they really need them.”

I didn’t say explicitly that I wanted to help such couples, but that’s what Veronica heard.

She nodded excitedly. As she expounded on the rewards of knowing you helped an infertile couple start a family, I felt a little dirty. I admired people with such motives, but for me, at least at this point, donating was about what I’d get rather than what I’d give.

I studied Veronica as she spoke. She was probably ten years older than me, wearing a mauve button-up shirt with shoulder pads. Her lips were painted a shade lighter than her shirt, and her eyelids a shade lighter than her lips. I thought of the advice I read once in a fashion magazine—makeup should match your coloring rather than your clothing. I wondered whether Veronica was judging me too. “So what I’m going to do now is tell you a little about the process,” Veronica said. I nodded as she recited, confidently and precisely, the evolution of in vitro fertilization from a procedure performed with a woman’s own eggs to one that frequently employs eggs from donors. As a donor coordinator, she’d surely given the speech dozens, or maybe hundreds, of times before, but her warm smile made me feel that she was truly excited to tell me.

The American Society for Reproductive Medicine (ASRM) estimates that donating my eggs would take approximately fifty-six hours over about two months, Veronica told me. It would begin with a series of physical, gynecological, and psychological examinations to determine my eligibility. Once I passed and was matched with a recipient couple, I would receive an injection to halt the normal function of my ovaries. This would help control my response to the fertility hormones I’d have to inject for ten days, and allow my cycle to be coordinated with that of the recipient.

I thought about that recipient. She’d likely be coming to the clinic the same days as me, maybe even at the same time. I knew I’d be looking around at the clinic’s other patients and wondering who would receive my eggs, and I guessed she’d be searching for me too. I began to feel fond of her, whoever she was.

On the coffee table, Veronica set a glossy black and white paper facing me that showed ten small and seemingly identical slides. The replication made it look looked like Andy Warhol’s version of an ultrasound.

She pointed to six dark blurs in the last slide. “Here we see six mature eggs,” Veronica said. “Look here and here and here and here and here and here.” I looked. Normally, a woman develops and releases only one egg per month, she explained, but under the influence of fertility hormones, multiple follicles develop. I pretended I could see the difference between this slide and the one before it. Pictures like these would be taken of me too, she continued, because after I began taking fertility hormones, I’d come to the clinic early in the morning every few days so ultrasounds could monitor my eggs’ progress.

“Since you’re young, you would probably have even more eggs than this donor,” Veronica said. Most women on fertility hormones produce as many as twenty-five or thirty mature eggs per cycle.

Veronica set another glossy paper before me, this one a color cross-section illustration of the female sex organs. The image looked only vaguely familiar, like something I was supposed to memorize in ninth grade biology. Veronica explained that when the doctor decided the time was right—just before my eggs would have released into my reproductive system—he would inject me with another drug to prepare them for retrieval. After sedating me, he would insert a needle up through my vagina to coax them from their follicles. After I left his office, my eggs would be mixed with sperm and incubated for three to five days before being implanted into the uterus of the recipient.

I’d already read about this process, but hearing it aloud made it more concrete. This was really going to happen. A part of me was going to become a part of someone else—that amorphous woman I had started to feel affection for. I really did want to help her. Still, the thought of giving away a part of myself to a stranger made me feel a little uneasy.

“The procedure can be done in fifteen minutes, and it definitely shouldn’t take longer than an hour,” Veronica said. “And because you’ll be given a sedative to help you relax, we ask that you have someone to accompany you home that day.”

I froze. That was going to be a problem.

I hadn’t told anyone about this meeting, not even my boyfriend, and if I ever told him, I couldn’t imagine doing so until after I completed the procedure. I knew that he, an internal medicine intern at a hospital just down the street, would shake his head in disapproval and tell me that money’s not everything, that a good story’s not everything. Then he’d invoke medical jargon to make his case for what a bad idea this was. He’d remind me that it was possible (albeit extremely unlikely) that the fertility drugs could over-stimulate my ovaries and require me to be hospitalized, and that the retrieval procedure could (in even more rare cases) result in an infection that could affect my future fertility. I suspected that by reiterating the risks, my boyfriend could talk me out of it, and I wasn’t sure I wanted to be.

“Oh, and one other thing,” Veronica said. “The day of the retrieval procedure is when you’ll get your check.”

I’d already done the math. The $8,000 payment I would receive for approximately fifty-six hours of my time worked out to just under $150 per hour—ten times more than any employer seemed to think I was worth. My boyfriend’s objections aside, I’d have to give this some serious thought.

On my subway ride home, I sat across from a woman who looked seven or eight months pregnant. I stared at her swollen belly and then followed its curve up to her glowing cheeks. She noticed me and smiled. I grinned back. Then I tried to imagine if the exchange happened a few months down the road, after I underwent the procedure; I wasn’t sure the moment would have felt so sincere. Would I wonder if it was my baby the woman was carrying? Would I wonder this about every pregnant woman whose path I crossed, and later, about ever baby, every toddler, every child? Was that anxiety worth $8,000?

It was certainly a lot of money for not a lot of work. In Canada, Australia, and parts of Europe, offering money for donor eggs is illegal. In Germany, Norway, Sweden, and Japan, the use of donor eggs in IVF is forbidden. The United States is, in fact, the only major country with no national policy on IVF, even though nearly 41,000 children were conceived via IVF in the United States in 2001—6,000 from donor eggs. The United Kingdom, on the other hand, not only has a policy but a federal agency—the Human Fertilization and Embryology Authority—that, among other things, sets caps on payments to egg donors.

In the U.S., the price for donor eggs has increased tenfold since the mid-1980s, when donors received about $250 to compensate for their time, transportation, and other incidental costs—about $4.46 per hour, a dollar and change above minimum wage. Donating back then didn’t have a significant financial incentive; most early donors acted out of altruism. Most donors still act out of altruism, Veronica led me to believe, but as time passed and the demand grew, donors began to expect compensation not just for practical sacrifices but also for the emotional burden and medical risk associated with donating.

Today, payments average between $1,500 to $3,000 dollars, depending mostly on the location of the clinic. In major metropolitan areas, payments are higher. Highly desirable donors—Ivy League students, models, athletes, accomplished musicians, and so forth—are frequently promised even more. Offers of tens of thousands of dollars are not uncommon, though some infertility experts maintain that advertisements like the ones Lily noticed in the Yale Daily News are usually not legitimate. Women who respond are often told that the ad has been filled but that other recipients are still seeking donors. These other recipients, however, always seem to offer substantially less money. As an Ivy League graduate living in Manhattan, I would be compensated well above the national average for my eggs. Given my doubtful professional situation, it felt nice to have someone recognize my worth, even if she was a faceless IVF recipient.

Two weeks later I was back at the clinic, this time to meet with a psychologist. Dr. Jones (as I’ll call her) led me to the same office where I’d met with Veronica. She sat down, crossed her legs, and set a white legal pad on her knee. “So, what can I do for you?” she asked.

I was taken aback by her question. I explained that I’d met with Veronica about the possibility of becoming a donor, and, as I understood it, this was the next step. Nodding, Dr. Jones explained that donors usually undergo physical evaluations first, but after looking over my application, she wanted to meet with me.

“Do you have any concerns about being a donor?” she asked as if she already knew I did. I could have easily recited Veronica’s speech about the virtue of egg donation, which I could relate to now more than I expected I ever would, but I remembered my reaction to the pregnant woman on the subway and decided to be honest. I told her I worried that I might suspect every pregnant woman I saw of carrying my baby.

“That’s a very real concern,” Dr. Jones said. Although my future feelings could not be predicted, she said, how I ultimately felt about donating was likely to be related to how I now understood my role in the procedure. Donating was more likely to be a positive experience if I believed I was giving a piece of myself for the possibility of life, and if I believed that my involvement ended there.

“What do you mean by ‘possibility’?”

“Success rates for in vitro fertilization with donor eggs are about fifty percent,” she said.

I was shocked. I knew that success rates for IVF with a woman’s own eggs hovered around thirty percent, and I knew that using a donor’s eggs increased the chances of success, but I assumed the increase would be more significant. To my surprise, I was also relieved. After the procedure, it would be just as likely that someone wasn’t carrying a child conceived from one of my eggs as that someone was.

Donating might be a negative experience for me in the long run, she added, if I believed a child with my genes was my child.

“I wouldn’t want to find the child and claim it,” I clarified. “It’s just that there might always be a latent curiosity.”

Dr. Jones suggested we table this issue and move on to my family history. She asked about the abnormalities in my parents’ histories documented on my application (both of them). I told her the details without much emotion; after all, I’d recited the information at nearly every doctor’s appointment I’d had over the last decade. I told her that my mom had battled cancer twice, first of the breast and then of the cervix. Dr. Jones seemed alarmed, both by the rarity of those two types of cancer afflicting the same person and by my nonchalant recounting of it. But to me it was just an empty fact: I didn’t remember my mom being sick, and now she was completely fine. When Dr. Jones asked if there was anything she should know about my dad, I chronicled, just as flatly, that he’d become addicted to cocaine when I was two, divorced my mom when I was three, lost his law license when I was ten, was homeless for a while, and then, when I was seventeen, became a used car salesman.

“Is he clean now?”

“Well, he’s held the same job for five or six years, so I think he probably is. But you never know, do you?”

Then Dr. Jones wanted to know about my sister. I mentioned her allergies and her attention deficit disorder, for which she’s been treated since third grade. Dr. Jones wondered aloud whether my dad has a learning disability too.

“My mom’s always suspected he does,” I said. “His mind jumps a lot. But maybe that’s because of the drugs.”

“Could he be depressed?” she asked.

“Maybe,” I conceded.

Dr. Jones’s pen stopped moving. She shifted in her seat and sat staring at her legal pad.

“I don’t think …” she began, her voice low, “that you’re going to be able to help us.”

She paused for what felt like minutes. “It’s really too bad,” she continued, now looking me in the eye. “We would have loved to have had you, but if there’s addiction or learning disabilities in two generations, well, it’s a liability issue for us.”

I sat on the couch, stunned.

“If your dad had just dabbled in drugs we could maybe overlook it,” Dr. Jones continued, “but from when you were two years old to five years ago, and maybe still ongoing—that’s a prolonged problem.” Drug abuse is linked with ADD, and if both are heritable.

I would also learn from the medical journals that my dismissal, though not legally necessary, wasn’t unfounded. Research suggesting an influence of genetics on addiction is amassing. In March 2006, for instance, the British Institute of Psychiatry released a study that found that variations in the genetic code for the DAT protein, which controls dopamine levels, can cause a person to become addicted to cocaine more quickly. According to these findings, if the suspect gene were passed from my dad to me, I would be fifty percent more likely than my peers to become dependent on the drug. Other studies have produced similar results. I stared blankly at my computer’s screen. This discovery stung worse than the rejection of my eggs.

Over the next few weeks, that statistic haunted me. A baby born of my genes would be fifty percent more likely than average to abuse cocaine. Though my boyfriend and I were far from thinking about having children of our own, I wondered how he might react to this news. Would he pull out now, knowing he didn’t want to have kids with someone whose DNA was so flawed? He, of course, could have children with someone else, but I would always have these genes. This was my lot. I wondered whether it was irresponsible of me to even consider reproducing.

One day, out of nowhere, it occurred to me that I could have lied. The clinic’s screening process was based on information provided by me. My prior medical records weren’t required, and neither were those of my family. Maybe the clinic’s staff wanted me to lie. Maybe that’s why Veronica had me fill out multiple applications and why Dr. Jones asked me to recite the family history I had already listed twice. Maybe they were waiting for my story to change, and maybe I missed the cue that it was supposed to. After all, Veronica made quite clear in filling the blank boxes of my paternal grandparents that veracity was beside the point.

Maybe Dr. Jones and Veronica knew that heredity isn’t all there is to addiction. Variations in my genetic code related to the DAT protein, if I do indeed have them, might make me more susceptible if I tried cocaine, but I haven’t. I haven’t because addiction isn’t just about an abnormal gene, it’s also about the factors that make drugs tempting. Disorders like ADD and depression can influence a person’s decision to turn to drugs, as can environmental and social factors, which also influence drugs’ availability. If addiction is about nature, it’s just as much about nurture. My dad and I—genetically speaking—were equally susceptible to addiction, but he became entangled with drugs while I didn’t, probably because his parents kicked him out when he was sixteen, and remained estranged from him to their deaths. I, on the other hand, was guided through childhood and adolescence by my mom, a positive role model who offered sound parental guidance. That, it seemed, has made all the difference.

But science is cold, definite. Genetics play a role in drug abuse, period. Nurture is unpredictable. It’s the job of Veronica and Dr. Jones and the clinic’s geneticist to play the scientific odds. It’s the statistic that matters, and a baby born of my genes would be fifty percent more likely than average to abuse cocaine. For weeks, that statistic echoed in my mind every time I passed a child in the park, on the sidewalk, or riding the subway. I thought, too, of how it felt to be rejected for a job that I’d nearly thought I was too good for.

If troublesome genes are to be shunned, a scientist might forever doom the future of the Bonanno crime family based on whatever genetic abnormality makes a person more likely to lead a life of crime. But science doesn’t always have the last word. After publishing Honor Thy Father, Gay Talese allocated some of his royalties to the Bonanno children. One of them used the money to go to medical school and is now a successful physician. His story would be unremarkable, discouraging even, to those who think genes are destiny, but to a writer—or me—he’s a goldmine, because in literature it’s the people who defy the statistics that count. This is the way of thinking I prefer.

Author’s Note: Shortly after writing this piece I stumbled onto a list of thirteen characteristics of adult children of alcoholics; characteristics that also apply to the children of drug addicts. I was skeptical at first. How many people aren’t either extremely responsible or extremely irresponsible from time to time? Who wouldn’t, at some point in his or her life, proclaim that they have difficulty with intimate relationships.  But I couldn’t ignore the fact that every characteristic listed seemed to apply to me. Some were more true than others of course, and some might have been true in the way that the intuitions of fortunetellers are. But I saw too much of myself in the list to laugh it off completely, and I realized that my desperate pursuit of experiences about which to write, like donating my eggs, was silly. I already had a story to tell. I’ve read memoirs about families affected by substance abuse, but never about the longer term affects on various family members’ personalities and the life each ultimately chooses to lead. I’m working on a memoir now. Writing this piece helped me get there. 

Alexis Wolff holds a BA from Yale University and an MFA from Columbia University. She has previously been published by the New York Times, the Los Angeles Times and in the Best Women’s Travel Writing anthology, among others.

Brain, Child (Winter 2007)

Resemblances

Resemblances

WO resemblances artBy Ellen Painter Dollar

“Look at those fingers! And her toes! So long and skinny…just like yours, Ellen.” I don’t recall how many people uttered those words during the early weeks of my firstborn’s life. Maybe only two or three. But I felt bombarded by this innocent observation. Shortly after my daughter’s birth, my husband, who accompanied her for a bath as I was stitched up after my c-section, had mentioned that her eyes were a “funny color.” At that first hint that my darkest fears would be realized, a heavy door slammed shut in my brain, locking away my dread about what, exactly, my daughter had inherited from me. But every time someone noted the resemblance between my daughter’s digits and mine, a dank fog of fear seeped in around the cracks.

My daughter’s long, skinny fingers and toes, the bluish color in the whites of her eyes—these were signs that Leah had inherited a scrambled gene that would wreak havoc on her skeleton.  When she was six weeks old, we received official word that Leah had indeed inherited my bone disorder, osteogenesis imperfecta (OI)—a condition that would likely cause her many fractures (I had about three dozen before the age of 11) and possibly painful corrective surgeries. I clutched her fiercely against my chest and told God that he had damn well better take care of this child. That day 14 years ago was the hardest day of my life.

Because of Leah, I have spent 14 years contemplating inheritance—all that we pass on to our kids, the ways that we both hope for and dread evidence that our traits live on in our children. Over those 14 years, technologies that allow parents to control what our children will or won’t inherit have become increasingly sophisticated and available. Today’s technology tempts us to believe that genes are destiny, that a particular combination of amino acids can predict what a child will look like and be like and live like. But genes are far more slippery things than that. My daughter Leah inherited my gene for OI. But the mutation that resides in every cell of both of our bodies has affected us in vastly different ways. Besides the three dozen fractures, I had a dozen surgeries to put metal rods in my leg bones to straighten and stabilize them. Leah has fared far better than I did. She has had 12 fractures and only two surgeries. Leah’s experience with OI has been far milder than mine—which doesn’t mean it has been easier.

Between her second and fourth birthdays, OI battered Leah particularly hard. She had six broken bones in those years, three of them occurring one after another over a particularly brutal summer. As we endured that fracture cycle, we were also contemplating a second child. The thought of having two fragile children, of going through the wary scrutiny of my newborn’s digits and eyes and skeleton again, was enough to send us to the fertility clinic to undergo preimplantation genetic diagnosis (PGD). Physicians, nurses, and lab technicians collaborated to help us produce four embryos by in vitro fertilization (IVF). The four embryos were tested for the genetic mutation causing my and Leah’s OI, and only one didn’t have it. We had a single shot at having a child guaranteed to avoid my OI gene. The shot missed its mark; I didn’t get pregnant.

We ultimately abandoned PGD for reasons both straightforward and complicated. We went on to have two more children naturally, each time having an amnio done at 16 weeks just so I wouldn’t have to face the awful scrutiny of my newborn’s skeleton, trying to figure out if he or she had OI before the lab tests could confirm it. Our second daughter got my husband’s blonde hair and blue eyes and my maternal instincts. Our son got my brown hair and eyes but is otherwise a carbon copy of his dad. Neither of them, to our profound relief, inherited OI. Our family complete, I could stop obsessing about whether or not my children would bear the weight of my genetic baggage. But I never stopped watching to see how the dreaded inheritance of OI would sit upon my oldest daughter’s fragile skeleton.

I am fascinated by how Leah’s body and soul have borne our identical genetic destiny. Where I was emotionally resilient as a child, almost ridiculously optimistic and cheerful in spite of so many fractures and surgeries, Leah has grappled with depression and anger, particularly after an accident one June caused multiple broken bones and effectively cancelled our summer. But now, as a teenager, she is far more comfortable in her own skin than I was, accepting (even celebrating) her place on the fringe of middle school culture, where she hangs out with other self-identified “nerds” more interested in music, art, and books than boys and fashions. By my standards (and those of OI), she is tall at five feet. She moves with a grace and steadiness that I, with my more damaged skeleton, long for.

I wonder if it is normal to be so mesmerized, so charmed by watching one’s teenager grow into herself. I regard Leah with particular intensity because her height and poise, her strength and straightness are so different from my crookedness and limp, proving that genes are most definitely not destiny. Watching Leah, I understand that inheritance is not a blueprint, precisely dictating a finished product. Inheritance is more like an artist’s toolbox; our children’s genes shape but do not ordain their lives. The genes Leah was born with, including my OI gene, have influenced where she started but do not determine where she will end up.

A couple of years ago, when I was speaking to a group of women with OI about my childbearing decisions and experience with PGD, one woman raised her hand and said, “I don’t understand why you would go through so much  [the process of PGD] to avoid having a child who is just like you.”

That Leah and I share such an obvious and momentous genetic trait (and probably, because she is my first teenager), I watch her intently, greedily. As it turns out, in many ways I did end up with a child just like me in Leah, and not just because of her fragile bones. Like me, she loves to read, thinks critically, looks for solace in music, and is attracted more to those on the outskirts of the action than in the middle. She also inherited the expected-but-unexpected snap of bone after a minor fall, the sinking feeling of knowing that a fracture has just derailed plans for the coming weeks or months, and the irritation of knowing more about what you need than the fresh-faced residents in the ER do. Eventually, she will inherit the worry that her own children could inherit this bone-cracking menace. Why was I so desperate to have a child who is not like me? Because while I know I cannot protect my children from all pain, I so desperately wanted to spare them from this pain that I know far too well.

People ask if I feel guilty for passing OI on to Leah. I have honestly never felt guilt; OI is not something that I willed or desired for her. But Leah’s pain—the physical pain of OI, the psychic pain of bodily betrayal—pierces me in a unique way because of how intimately I know that pain. There is a cliché that when you have a baby, you must endure the sensation of having your heart walking around outside your body, subject to all the world’s beauty and pain. I sometimes feel like my own skeleton is walking around outside my body. Leah is old enough not to need reminders to be careful. Indeed, even when she was much younger, she was innately careful. But I still admonish her to take care when it’s icy or wet. I can see in my mind’s eye and feel in my own bones the sensation of slipping, falling, hearing the snap, feeling the searing pain. I have a visceral reaction to Leah’s fractures—nausea, dizziness—that I have never had after my own fractures. Leah’s leg breaks and I feel it—not in my leg but in my gut.  Then her heart breaks too and I am undone.

When Leah fractures, I can be so overcome by lightheadedness that I end up discussing Leah’s care with ER personnel while sitting with my head between my knees so I won’t pass out.  I hope she gets some comfort from knowing that I understand, in the deepest, most visceral way possible, her pain. I am just beginning to glimpse an unexpected bright spot in the muddled inheritance that has passed from me to Leah—her ability to offer me the same deep, visceral empathy.

One Sunday morning several months ago, I slipped on some black ice when going to get our newspaper. Landing hard on my back, I broke two ribs and a shoulder bone, and partially collapsed a lung—the kind of injuries that stronger-boned people incur when they fall from trees and roofs. I managed to crawl from the frozen front walk into our entrance hall, but couldn’t go any farther. While I lay there waiting for the ambulance to arrive, as my husband reassured my two younger children and called my mom to come stay with the kids, as I struggled to breathe, Leah sat next to me on the floor. She just sat there, silent. At one point, I said to her, “You know, Leah, don’t you? You know how I’m feeling.” I wasn’t talking just about the pain, but also the crushing disappointment of a regular day ruined, the weightier knowledge of the ruined days to come. I was talking about feeling powerless in the face of something as stupidly mundane as ice, and being betrayed by the fragile body gaining the upper hand on the strong spirit. Leah nodded. Yes, she knew.

That Sunday morning, I understood that Leah’s inheritance is not merely a faulty gene and fragile skeleton, but also the truest kind of compassion—the kind that arises when you recognize your own pain in another, and vice versa.

Empathy and compassion are the most important legacies any of us leave our children, the inheritance we most want them to receive and treasure. Leah has received this inheritance all wrapped up with a far less desirable, far more insidious legacy of literal brokenness and daunting pain. Does this gift of empathy mean that Leah’s inheritance of OI is “worth it,” because of all it has taught her? Many people insist that it should mean that, trotting out all those tired clichés about what we learn from pain. But for me, no good thing can make the pain I’ve passed onto my firstborn child “worth it.”

Here is the paradox that I live with: I am in awe of this child—her groundedness, wisdom, and grace. I have no doubt that what shines in her character—what drove her to sit quietly next to me as I suffered—has been polished by pain. But if I could take her pain away, I would, her groundedness, wisdom, and grace be damned. Why was I so desperate to avoid having a child just like me? Because even if wisdom and empathy are forged in the crucible of pain, I am intimately acquainted with the crucible’s agonizing heat, and no parent would wish such a thing on her child.

And I understand that is impossible—despite the promises of today’s reproductive and genetic technologies—to hand-pick our children’s inheritance, ensuring that they get only our thick hair or talent for math or optimism, and not our anxiety or dyslexia or propensity toward substance abuse. Our children’s inheritance is a massive, many-tentacled thing that cannot be contained or predicted by even the most sophisticated technologies.

I look at Leah and see myself in her spidery fingers and odd gait. I see myself in the way she sat with me that Sunday morning, quiet and steady, mirroring all the times that I sat with her as we, together and also terribly alone, absorbed the harrowing fact of a new fracture and all it would mean for the days to come. I see the effects of my faulty gene that go far beyond a fragile skeleton and the grief of (literally) shattered hopes. I see the wisdom, poise, and empathy that come from intimate knowledge of pain and disappointment. I also see, with a measure of envy, how much straighter and taller she is than me, how little she seems to care about how others perceive her.

I can never be grateful that my daughter inherited my brittle bones, even as I understand how the pressures of living with our disorder have shaped her in beautiful ways. But I am grateful for who she is. And I am also grateful that parents don’t get absolute control over our children’s inheritance, that we don’t get to pick and choose what they get from us, With my anxieties so focused on what sort of bones my child would have, with my vision so limited, I could never have predicted, much less devised, the wounded and gracious person my daughter has become.

Ellen Painter Dollar is the author of No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction (Westminster John Knox, 2012). She blogs at Patheos.com, and regularly does media interviews and speaks to community, student, church, and book groups. Learn more at http://www.ellenpainterdollar.com.

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