Born to Trouble

On the front of the dust jacket of Raising Henry: A Memoir of Motherhood, Disability, & Discovery, Rachel Adams is smiling. She holds her son—clearly the Henry named in the title—in a playful dance, his small hand in hers, while he grins at the camera. It's a sweet, mother-and-child image that captures the close affection and mutual delight that I've known with my own sons, and I immediately found myself wanting to learn more about this woman and about her son Henry. What's not to love?

Raising Henry: A Memoir of Motherhood, Disability, and Discovery

Rachel Adams (Author)

Yale University Press

272 pages

$18.95

When her first son, Noah, is born, Adams is already a published author, a professor of English at Columbia University, and has been with her (similarly successful) husband, Jon, for 13 years. Having lost her own mother as a child, and having been raised to measure success in terms of academic and professional achievement, she finds the transition to motherhood painful at first. She wishes she could feel as comfortable behind a stroller as behind a lectern. "I disliked staying home with my baby, and I hated myself for disliking it," she says.

Gradually, however, Adams grows to accept her new role and to truly love her child. And as the birth of her second son approaches, she looks forward to his arrival with high hopes. He will be the perfect addition to their little family. Before Adams goes into labor with Henry, she is already in love with the healthy, beautiful baby she expects him to be.

In the moments after Henry is born and his diagnosis of Down syndrome is revealed, however, her hopes and expectations fall, unceremoniously, to the delivery room floor. Henry enters the world like a sledgehammer, smashing Adams' carefully laid plans to rubble: "I couldn't stop crying. I'd like to say I cried because I was worried about the baby upstairs in the NICU. But I didn't feel much of anything for him. I was mourning the loss of the son I thought I was going to have and the family I imagined we would be."

It's hard to fault her for her emotions at that moment. As the mother of a child battling cancer, I understand the shock of hearing hard news from a medical professional, and I have felt the weight of the life-altering decisions required to cope with that news. A great deal of Adams' story resonated with my own experiences. But more often than not, as I read her account of the birth and first few years of her son's life, I found that I sorrowed for her less for the challenges arising from Henry's mental and physical disability and more for the challenges arising from her own spiritual disability.

While Adams' mind is terribly bright, her path lies in terrible darkness. When it comes to facing the bigger questions, the deeper struggles, the darker fears, Adams has nothing to hold onto but empty fatalism. "At bottom," she says, "we humans are meat just like the lamb on my plate."

Adams' understanding of what we all are at bottom calls into question the possibility of meaning for Henry's life—or any life. Yet she seems to prefer that meaninglessness to the religious alternative. Before her husband's Bible Belt parents meet Henry, she says, "I told Jon I couldn't bear it if they talked about God." And after other relatives visit, she is relieved when she realizes that "nobody had mentioned God or angels or Jesus. Nobody had described Henry as a gift or a blessing."

"I don't live in the kind of world," she says, "where people say that Henry was sent to us for a reason."

If I were living my life as an outworking of Adams' worldview, I imagine the ultimate pointlessness of it all would crush me. At times, it seems nearly to crush her. And it certainly affects both her day-to-day decisions and her most momentous choices.

Rachel Adams lives in New York— a city with an abortion rate that is nearly double the national average—and in an era when, according to one government study, the abortion rate for children diagnosed with Down syndrome has reached upwards of 90 percent. That Henry survived the womb at all is a statistical improbability, and Adams feels compelled to explain Henry's existence: "We live in a world," she says, "where a baby like Henry demands a story."

"I never had an amniocentesis," she writes:

I know. This is shockingly risky behavior on the part of an ambitious, overeducated, overachieving person like myself. Amnio was made for people like me, women with a deep need for order and control and perfection. Women who strongly believe in the right to an abortion. Technology was supposed to liberate the woman who needs to know she will never have to be the mother of a child like Henry.

It turns out that preliminary tests indicated a low likelihood of Down syndrome, so Adams felt secure enough that the odds would play out in her favor. In retrospect, she asks herself, "What the hell was I thinking?"

How the hell could Henry have been allowed to live long enough to see daylight? This child, who ought to have been perfect, betrayed her to a life of endless self-sacrifices. And therefore, at least at the outset, she believes it would have been better if he had never been born.

This conviction is a bloody stain that continues to seep through the rest of Henry's story.

The work of raising Henry is undeniably hard. But Adams repeatedly gives the impression that a child like Henry can realistically be cared for only by highly educated, metropolitan parents with ready access to legal advisors, medical experts, nannies, élite day care centers, and endless therapists. While several perfectly ordinary friends of mine are, without massive interventions or expensive and extraordinary efforts, raising healthy, happy children who share Henry's diagnosis, Henry's care moves from one paid professional to another.

Adams regrets how few adults she sees with Down syndrome while simultaneously advocating the very beliefs and practices that result in so few adults with Down syndrome.

First, Adams hires a live-in, round-the-clock nurse to hold and feed Henry. When her job is finished, Adams then worries, "How would we explain Down syndrome to Angela, our Dominican nanny? Worst of all, I was tormented by the thought that Henry wouldn't be able to go to daycare with Noah." After the nanny and daycare are covered, she says, "I threw myself into the task of organizing Henry's appointments and getting him the best possible team of therapists." She spends hours ensuring that Henry finds his way into the right early intervention programs and schools and then busies herself with on-campus advocacy work that might eventually allow Henry greater opportunities in higher education and beyond.

Adams pursues some truly admirable goals, but for all of her work on Henry's behalf, she often comes across simply as Henry's personal administrator. She offers the reader very few glimpses into her son's own unique personality, and she spends so much time working for Henry that I wonder how she finds any time to spend with Henry.

Of course, I understand that parenting is never a solo act. We all need plenty of outside help, and parents of kids with special needs certainly require more support than most. Nevertheless, the long list of hired caregivers for this little boy from morning until night left me wondering: Who, exactly, is Raising Henry?

It's not that Adams is a terrible mother. She's not. She wants her boys to have full, fulfilling lives, and I do believe that she is doing the best she knows how under the circumstances—circumstances that are often very hard indeed. Troubles seem to come at her from every side, and it's easy to find fault wherever she looks.

She blames herself for not getting the right prenatal screening. She blames the doctors and interns for their insensitivity. She blames the hospital for not having enough support available. She blames the parenting books for skipping over Down syndrome and treating it like a disease. She blames society for its lack of accommodation. As she confesses later, "Jon likes to call me 'the elephant of wrongs,' the person who never forgets a slight or a disagreement."

And yet, while it's true that many of the attitudes she encounters are inexcusable, her moral framework isn't solid enough to uphold many of her (legitimate) objections. It wobbles under the weight of its own contradictions.

"No woman," she says, "should be forced to give birth to an unwanted child." But at the same time, she expects that the rest of society should be "forced" to provide for a child it may not want. Adams regrets how few adults she sees with Down syndrome while simultaneously advocating the very beliefs and practices that result in so few adults with Down syndrome. She has no patience for the attitude that cannot recognize the personhood of someone with physical or mental weaknesses. And yet physical and mental weakness (due to gestational age) is the dehumanizing basis upon which abortion is justified in the first place.

Adams occasionally hints that she recognizes some of these contradictions, but she clearly does not know—or does not want to know—how to resolve the tension. When she begins to consider what her own convictions might have done to Henry's life, she cannot face the thought. "I try to imagine what it would be like if Henry's story and mine had unfolded differently. What if I had made different choices? Taken more tests? I try," she says, "but I've never been able to do it. As Jon said matter-of-factly soon after Henry was born, 'It happened to us.' "

Henry happened. He has a disability, and there is, for Adams, no ultimate reason or purpose for it. It just happened, and she is dealing with the consequences. But clearly something far more than Down syndrome has "happened" as well. That photo on the cover is no lie.

Adams finds true delight in her role as Henry's mom, and she knows how to give good gifts to her children. If he asks for bread, she's not going to give him a stone. In fact, she'll probably bake him a cake. By the end of the book, she has come to embrace Henry for who he is—Down syndrome included. Knowing what Adams recounts through the rest of the book, however, makes those moments of happiness ring hollow.

In spite of the joy, the successes, and the hopes for a brighter future, it's hard for a Christian not to pity the bleak meaninglessness of Adams' whole endeavor. She's right that Henry's life does demand a story, but she cannot see that, even before Henry arrived, he was already part of a much bigger story—a story of which she is not the author. I can only hope that Rachel Adams will someday come to discover that Henry's life—as well as her own—is one of deeper meaning and more eternal value than she has ever been able to comprehend.

Hannah K. Grieser designs graphics in small-town Idaho, where she and her husband are raising five sons and too much zucchini.