By 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.