I drove much of the way home to Minneapolis that evening. Holding the wheel helped me keep from getting sick. As Dan slept, I began passing billboards in a series along the highway back to the Twin Cities. Each billboard featured a bouncing baby, several months old, bright and expressive.

What! I could smile before I was born, one stated, rather inscrutably.

Hello world! said another. My heart was beating 18 days from conception.

The signs were like slaps in the face—invasions of the quiet peace I had managed to cultivate over the weekend. Did the organization sponsoring the billboards, Pro Life Across America, really believe that women needed to be reminded that the choice to end a pregnancy is a choice against a life of some kind? I knew I might one day choose against seeing my son’s smiles. Against pressing my ear to his chest and hearing his heart thumping like a tight little drum.

Abortions were legal in Minnesota up to twenty-two weeks’ gestation, when a fetus would have fingerprints and hair, suck his thumb, and hear sounds from his mother, but would not be able to survive outside the womb—and certainly wouldn’t wear size-three diapers or grin with billboard-perfect dimples. Against my better judgment, I had been dipping into mainstream books to read about the progress of my pregnancy. Like the billboards, each book eagerly addressed embryonic and fetal development, giving me, week by week, little human characteristics to mourn if we chose to say goodbye to our pregnancy. An abortion following DNA testing would most likely take place at about fourteen weeks, when our four-inch, translucent-skinned fetus might begin to coordinate the movements of his arms and legs.

As the colossal spokesbabies flashed by, I realized that I wanted a book to reassure me of the things my six-week-old embryo couldn’t yet do. I wanted to read a single paragraph that took pains to remind me how far from consciousness, from human behavior, my gestating fetus was: Your baby is one-and-a-half years from being able to interpret simple spoken sentences, and at least two years from speaking phrases on his own. Your baby is at least two years from recognizing himself as a conscious being, and three years from understanding that other people are separate individuals. In five years, he may have the capacity to read written language. He is at least eighteen years from distinguishing information from propaganda.

But instead, the authors of some popular pregnancy guides actually identified which circumstances might justify an abortion. “If testing suggests a defect that will be fatal or extremely disabling,” one said, “many parents opt to terminate the pregnancy.”

These passages always caused me to call into question my reasoning. HED wasn’t directly life threatening. Our affected son would be unlikely to die as a child. And I didn’t know what “extremely disabling” meant, but I suspected that the authors of the book would not characterize HED that way. Neither would I.

Dan slept in the passenger seat with his head tipped back and his jaw gently open. My frustration grew as the city lights drew closer. I felt angry that my society had made a taboo subject of one of the most important journeys of my life. An abortion—a story that would belong to me, shape me, become a part of me—would henceforth divide people into those who could handle a relationship with me and those who couldn’t. It seemed I would have two choices: I could live as if I had a terrible secret, or I could live marked.

The next morning, I phoned my friend Eula, who described a woman’s rights in words I hadn’t considered: “A pregnancy falls within the mother’s domain, and no one else’s,” she said. “Not the public domain, not the church’s, and not the state’s.”

Now that I was carrying a baby, I viscerally felt what Eula meant by “a mother’s domain.” I had a moment of physical sickness just thinking about the idea that anyone else might try to claim authority over my pregnancy. Imagining such a thing was one of the most confining, frightening feelings I had known as a woman who had grown up carefree and safe in a nation of so many freedoms. It was the feeling of persecution. Someone might as well steal my hands and face, I thought, and call them their own.

“But I still feel so guilt ridden,” I told her, “to consider ending a little life just because it is imperfect. This baby would live, and he could quite possibly have a good life. I just can’t know.” But “I’m doing this for the baby,” I reminded myself out loud, “not for Dan and me.”

Eula let my words hang in the air. Then she said, “Why don’t you feel you deserve to have the child you want?”

I was struck. Her words touched into the thinking that seemed most dangerous to me, most immoral. Could it possibly be all right, in my America or in some other life in some other place, for parents to want healthy children for their own peace of mind? I thought of my ancestors who, like millions of modern people around the globe, needed plenty of healthy children with strong backs to ensure the family’s survival—and with any luck, prosperity. Dan and I had no plans to rely on our children for a livelihood; we wanted children just for the joy of it, just for the journey. Even though we knew a baby without HED would save us tens of thousands of dollars in medical and dental bills, our choice to become pregnant, and our desire for a healthy child, could not be rationalized as economic necessity. It was closer to emotional luxury.

But thanks to Eula’s question, I saw folded deep in my heart a tiny possibility. Maybe, I thought, I should want a healthy baby for myself, and for Dan, and for our marriage and future. It might be noble to shoulder a burden, but it is also good to forestall harm and strive for plenty.

I kept the thought to myself, holding close its kind whisper of acknowledgement that this was, after all, about me, too. I felt a glimmer of self-love—something I had not allowed before. It marked the beginning of a turning for me, but my transformation was slow. I still read pregnancy books like an addict. I couldn’t pull my mind away from the details about how much bigger and more vital our baby was becoming.

“I’m due at the end of May,” I told my sister over the phone. “It’s the strangest thing to look into my future just seven months and see such different possibilities.”

“You know,” my sister said slowly, “you’ve started the journey toward having a baby, and it’s really not going to be over until someone is born. The way I see it, you’re going to be pregnant until that child arrives, whether that’s eight months from now, or twelve, or twenty-four. This might not be the baby we hold. But you’re on your way.”

She was right. I felt as if I had jumped into a lake and started swimming, not knowing when I would reach the opposite shore, or even how far it was. I had been thinking of my pregnancy as three months long at minimum, about ten at the max. But my sister helped me stretch my idea of pregnancy to include another sense of the word: meaningfulness in waiting.

I felt better with the idea that my swim could be all one long, blind backstroke to a distant shore, instead of several dogpaddles from the sand to the dock and back. I liked water, but swimming to actually get somewhere had always been exhausting and difficult for me. Holding my pregnancy—the figurative one and the physical one—felt no different. Yet in my dreams, I had been swimming almost every night. I swam through floods, under ice, through choppy shipping canals, and across the bows of ocean liners. I was never afraid. I always knew I would make it. Sometimes I rescued other people who believed they would drown.

I was bursting to talk to my mother, who lived 2,000 miles away in Seattle. She was an avid dreamer who would relish helping me explore my nighttime swims. But it wasn’t just for the pregnancy news or the dreams that I wanted to call her, go to her. I just wanted to be close to her. I took my daily walk, shoulders slumped, wishing that she would appear around the next bend, waiting with a hug for me, a rub for my hair. A phone call to Seattle wasn’t going to give me the connection that I wanted. And I was tired of words. I knew if I told my mom about the pregnancy and our plan, it would rend her heart. It would pry open years of her own questioning, leaving her with a daunting emotional project. After all, she was a carrier, too, having received the gene for HED from her father, who lived a too-short, too-difficult life. And she passed the gene not only to me, but also to my brother, who now lived with the disorder. If I told my mother about my tentative pregnancy, with modern medical choices she never had and perhaps never would have wanted, I would be forcing her to reexamine her own secret sadness. At that moment, I didn’t have room in my head or heart for the guilt I would feel if my pregnancy became anyone else’s burden. Someday I would be ready to share, but not now. Not halfway through week seven, when my lungs burned from swimming and my baby’s heart had just bloomed into four perfect chambers.

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BONNIE J. ROUGH is the author of the new memoir Carrier: Untangling the Danger in My DNA (Counterpoint). Her writing has appeared in several anthologies, including Modern Love: 50 True and Extraordinary Tales of Desire, Deceit, and Devotion, The Best Creative Nonfiction Vol. 1, and The Best American Science and Nature Writing 2007. Her essays have also appeared in many magazines, literary journals, and newspapers, including The New York Times, The Sun, The Iowa Review, Ninth Letter, Identity Theory, and Brevity.

Bonnie holds an MFA from the Nonfiction Writing Program at the University of Iowa. She has taught at The Loft Literary Center in Minneapolis, Minnesota, where she became the recipient of a Bush Artist Fellowship, a McKnight Artist Fellowship for Writers, and a Minnesota State Arts Board grant.

She has traveled extensively and calls three cities home: Seattle, Minneapolis, and Amsterdam, where she currently lives with her family. There, she serves as a fiction editor for the international literary journal Versal, pedals a boxbike for transportation, and writes in the window of a 400-year-old canal house. On her blog, The Blue Suitcase, she writes about the life and adventures of an airline family abroad.

20 responses to “Excerpt from Carrier: Untangling the Danger in My DNA

  1. rachel schinderman says:

    Beautiful. I look forward to reading more.

  2. Debbie says:

    Bonnie, this is beautifully written and heart wrenching. I am truly sorry.

    I am the mother of two but have lost three other pregnancies all within the first 8 weeks, not by choice but by nature. With that said I am pro-choice on every topic there is, I believe that every person (man or woman) has the right to make decisions that affect their life and need to be able to live with those decisions. If you believe you have made the correct choice, no matter how difficult it is, then you have indeed made the correct choice. Don’t let anyone tell you otherwise.

  3. Uche Ogbuji says:

    By indications of this excerpt, this is a must-read book. You relate this episode with so much wonderful address of painful complexities that I hope I don’t come off as oversimplifying.

    For me the crux is here:

    “Dan and I had no plans to rely on our children for a livelihood; we wanted children just for the joy of it, just for the journey.”

    I don’t believe you. Everything else you write here indicates that you understand being a parent is so much more than that. Joy is the byproduct (if we’re lucky) of responsibility, which is the key word, of course. You have a responsibility to take the decision for yourself as to whether or not you want the baby to live with that burden. There are strong moral arguments each way, but obviously no absolute solution. You have seen people in your own family suffer live with HED, and so I think you have more than enough moral cover in thinking that it is more burden than you would want your child to carry. And your own well-being as parents is as important as that of the child, anyway. Responsibility is a product of our connections with others, and it flows from both ends of that connection. I would never dare judge a young, poor family who have no reason to expect that the might have any genetic defects, but do think that the burden of raising a child (or another child) is not something that they can handle, and so choose to terminate the pregnancy. Of course it might be better in some ways of viewing it were they to put up an unwanted child for adoption, but that is so much easier for someone to say who does not have to go through the extraordinary journey of pregnancy themselves, and then give away the child.

    Which leads me to my resounding endorsement of Eula’s formula. Pregnancy is the mother’s domain. Period. That is not a feminist position. It is a pragmatic one, and IMO ultimately a moral one. My wife is nearing the birth of our 4th child, and there is no way I could presume, watching the biological, emotional and other effects on her, that anyone else has the right to interfere. She is enduring the most trials and bearing the most risk. The baby will inevitably be most attached to her, at least for a long time. The father is of course a close second most important consideration, but anyone who cannot accept being second in that regard had better just keep their sperm well away from any eggs. All other parties, including other relatives, law, society, religion, etc. have no place intervening except in truly extreme circumstances.

    Which I guess is all just a long-winded way of saying that I concur strongly with Debbie 🙂

  4. […] on the fabulous literary culture site The Nervous Breakdown (TNB). The feature includes brand-new book excerpt and a self-interview in which I am both interviewer and subject. (I know it sounds like an exercise […]

  5. Bonnie says:

    These are wonderful comments. One of the most rewarding things for me about writing this book and sending it out into the world has been hearing new perspectives that support, broaden, and deepen my own. Comments such as these, which take into account the complexity of real, heartfelt decisions when there is no “absolute solution,” far outweigh the off-the-cuff moral critiques my book now and then receives. (But the thing that has surprised me the most since my book came out is that the preponderance of feedback has been positive and thoughtful–go figure! )

    Uche Ogbuji, I must add how special it is that your wife has the support of a partner who seems to deeply understand the “extraordinary journey of pregnancy” and the fact that pregnancy and motherhood are more than physical. I wish every pregnant woman could have her journey–whatever it may be–supported in this way.

  6. Ronlyn Domingue says:

    Bonnie, I wasn’t familiar with HED and looked it up. A new learning for today.

    Several years ago, a friend learned that she was pregnant with a child who would not survive after birth. I can’t recall the specific condition he had, but his brain was severely malformed, as was his little body. She struggled with the decision to abort. She decided to abort, then changed her mind (grounded much in her Catholic faith) but went into labor before the 24th week. All I could do was listen and be supportive of whatever choice she made for herself. A former reproductive rights advocate, I firmly believe that every woman must be given respect and support to make a decision that is right for her.

    No doubt your book will offer countless families a mirror and a comfort. Thank you for sharing your story.

    • Bonnie says:

      Ronlyn, thanks for sharing this story and your thoughts. Every person’s journey will be different, but there’s no need for those journeys to be painfully lonely as well. How good that you were a support for your friend.

  7. M.J. Fievre says:

    “It was the feeling of persecution. Someone might as well steal my hands and face, I thought, and call them their own.” Gave me goosebumps.

    Pro-life? Pro-choice? I think each situation is unique. Your struggles are so well-rendered here. Thanks for sharing.

    • Bonnie says:

      M.J., yes, I couldn’t agree more that each situation is unique! That was one thing that was a comfort to me in writing a potentially controversial book–it was my story alone, without an argument or an agenda. (But then I get to argue at least a little here on TNB, such a great venue!) In so many ways it’s nonsensical to consider abortion a “debate.” Isn’t that a little like calling “marriage” a debate or “family” a debate or “childbirth” a debate? It cannot, in actuality, be reduced to “positions,” and certainly not only two of them!

  8. Simon Smithson says:

    “It was the feeling of persecution. Someone might as well steal my hands and face, I thought, and call them their own.”

    I agree with M.J., this is a beautifully rendered line.

    I’m at the age where my friends are starting to have children; weddings are occurring more and more frequently, and over here, that usually equates to kids. As one of the last single men standing, conversations and discussions and decisions haven’t been part of my experience.

    So I can’t even imagine what it would be like to have to process this stuff on any kind of level, as a husband, a partner, a father.

    Thank you for sharing your story.

    • Bonnie says:

      Simon, the fact that you’re here now suggests that you’ll be more than ready when the time comes to make critical decisions with a partner…especially those difficult ones without a clear “right” or “best” answer. And if you have children, these occasions will be inevitable–if not prenatally, then of course as a parent! Cheers to you and thanks for your willingness to stretch into a topic that feels faraway to you.

  9. Erika Rae says:

    I imagine writing this book must have been simultaneously the hardest thing you’ve ever done and the biggest relief of your life. In other words, I can only imagine this book came directly from the heart. The topic – and consequently, the book – is important in our culture. Thank you for writing it.

    Welcome to TNB, Bonnie.

    • Bonnie says:

      Erika, it’s such a thrill to be here, in conversation with so many good readers and writers. Thank you!

      You’re quite right that this project was both scary and freeing. The scary part was the writing, then anticipating the publication date. But about 4 months before the book came out, somehow I felt a huge shift and was ready. The freeing part came with letting it go out into the world.

  10. Irene Zion says:

    Bonnie,

    This is beautifully and heartbreakingly written.
    It’s clear the book from which this is an excerpted will be also.
    I’m sorry.

    • Bonnie says:

      Thank you, Irene. It has been amazing to me, after working for several years on the book, to finally find out how Carrier feels and sounds to readers. The feedback has been so rewarding!

  11. Alison Aucoin says:

    Different but the same: When I completed the paperwork to adopt from Ethiopia I had to fill out a questionnaire that listed probably 70 or 80 different medical conditions that I was “willing to accept” in the child I would adopt. Completing this was by far the most heartbreaking part of the 19-month process. I agonized over each condition, thinking of wonderful friends who one or googling another when they were unfamiliar. In the end I “accepted” only a handful of very minor conditions.

    Oh, the guilt! What if the child I was ‘meant’ to parent had condition X or Y? How could I knowingly leave an ill child in an orphanage in a developing country? I was a wreck until I realized that just like exercising and eating right, I needed to do whatever was necessary to make myself the best mom I could be. Being a non-wealthy single parent, I simply wasn’t the right person to raise a child with significant medical needs. It wasn’t selfishness, it was reality. After all, would I be doing an ill child any favor by struggling, and possibly failing, to cope with their needs? That said, if- god forbid- my daughter ever becomes chronically ill, I’ll do my very best and love her just the same. But there’s a big difference between coping with something unexpected and setting yourself up for unmanageable hardship from the beginning.

    In other words, only a parent can know what they are capable of and as such, only they should make the ultimate decision. Thank you for sharing such a deeply personal story in such an open and non-voyeuristic manner.

    • Bonnie says:

      This is such a striking story, Alison–you were faced not only with deciding in the moment, but also deciding about many more than one potential problems. Unimaginable! But you did it, and you learned the same thing I finally did: it wasn’t really about the problems or what I was capable of handling. It was about my own wants and needs, too. I think parents, and perhaps especially mothers, add their own desires to the equation only at the very end…if at all.

  12. Marni Grossman says:

    My older sister is pregnant and she’s received some dubious advice from her male OB-GYN. “Hannah,” I said to her, “Your doctor may have delivered hundreds of babies, but he’s never actually given birth to one.” It seems to me that only the woman in question is the true expert on her own circumstances, on what is and isn’t right for her.

    This piece was so powerful and spoke so well to the complexities of that little word: choice.

    • Bonnie says:

      Marni, thank you! Such a big part of my journey has been (and continues to be) learning to to gather information and then close my ears to the outside and listen to the whispers within. As a birth doula, think this is just as important for maternity issues as it is with reproductive choices. I hope your sister heard your advice… then listened to whatever her own heart is telling her!

  13. kavita says:

    Absolutely wonderful!
    I cannot wait to get my hands on the book and go on this emotional journey with you.
    Superbly written, each sentence,word and phrase glows with your emotion.
    This story reminded me of the family related emotions I had to go through when, my brother found out his baby has a genetic disorder called prader willi syndrome, him and his wife decided to keep the child, but the stress qnd emotion was physically eating them away, it effected all of us.
    Bravo again for such a master piece

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