Raising Henry: A Memoir of Motherhood, Disability, and Discovery
Raising Henry: A Memoir of Motherhood, Disability, and Discovery
Rachel Adams
Yale University Press, 2014
272 pp., $17.00

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Hannah K. Grieser

Born to Trouble

Raising a child with Down syndome.

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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.' "

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