According to the National Association for Down Syndrome, one out of nearly every eight hundred babies born is diagnosed with Down syndrome — either pre- or post-natally. Recently, the American College of Obstetricians (ACOG) has recommended that all pregnant women receive screening for Down syndrome, regardless of their age. This is a shift from the past, when only women over the age of thirty-five were suggested to have prenatal testing.
These changes in the ACOG’s guidelines has brought to the forefront ethical considerations in the lives of the unborn, including those with Down syndrome. According to a recent article in the New York Times, parents of children with Down syndrome have begun to lobby doctors and hospitals to represent their lives, in order to help couples making decisions about prenatal testing, and, inevitably, termination.
In the case of Jennifer Graf Groneberg (Roadmap to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome) those choices were never presented, and the decisions were made for them. Five days after giving birth to twin boys, Groneberg learns that her son Avery has Down syndrome. With the ACOG guidlines looming for every expectant mother — and with those tough decisions about termination versus going through with the pregnancy — Groneberg’s book offers an invaluable look into the experience of being a mother to a child with Down syndrome.
When Groneberg and her husband learned they’d be having twin boys, their main concern was whether or not they’d need an addition to their house. Five days after their sons were born, Avery was diagnosed with Down syndrome. Moment by moment, in chilling detail, Groneberg walks the reader through the experience of learning her son’s diagnosis, the confusion and fear that news brings to her, the other worldly sense that this birth is not turning out to be as she and her husband had dreamed, or expected:
The doctor unfolds a piece of paper. In front of me is a photocopy of pairs of squiggly lines that represent chromosomes. . . . My eyes scan the paper–dots and squiggles, two by two, until there, I see something different. An extra dot. At the twenty-first pair of chromosomes, Avery has one extra. Where there should be two, there are three.
“What does this mean?” I mumble.
“Avery has Down syndrome.”
“But what does this mean?” I repeat, this time a little louder. Words, which usually come so easily, are failing me. I want to know what’s going to happen to us. What will happen to Avery? To Bennett, to Carter? I want reassurance that we will all be okay.”
A nurse appears out of nowhere, but Dr. Rosquist waves her aside. She unlatches the top of the box and carefully lifts Avery up and into my arms. He is pink and red and blotchy, like most newborns. He has a little tuft of downy brown hair. I can’t see anything wrong with him. For a fleeting moment, I think perhaps it’s all a mistake. But no, there are the papers and their unmistakable black-and-white truth. I look into Avery’s eyes. They are deep, dark blue like a lake on a stormy day. Around the irises are tiny white spots that glitter. They are the most beautiful eyes I’ve ever seen.
Groneberg goes on to convey the fear and shame surrounding the diagnosis, envisioning “the thick neck, the big tongue, and the wide, staring eyes. I think of adult diapers, health problems, and poverty. I’m sickened with fear, and devastated at the grief I think I’ve brought down upon us, the happy threesome . . . I’m ashamed, and my shame disgusts me.” A nurse offers an aside: “people are lined up to adopt these kids,” and the reader is reminded yet again of the ignorance surrounding disability — that there is something magical and otherworldly (and therefore extremely desirable) about a child with Down syndrome — and that, at the same time, there is something to be ashamed of as well.
The National Down Syndrome Society has expressed concerns about the new ACOG guidelines, and has taken a position that “urges health care professionals, policymakers, and the Down syndrome community to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.” It’s the feeling of the NDSS, and many parents within the Down syndrome community, that the kind of ignorance and shame Groneberg experiences in the first days and weeks after Avery’s diagnosis is, in fact, the norm for most parents. Increased prenatal screening, combined with that ignorance, will inevitably result in fewer children like Avery being born. What makes Groneberg’s book so invaluable in the midst of these ethical considerations, is just how effectively she mirrors any mother’s experience of giving birth to a child who is, in society’s view, imperfect, and how she then in turn demonstrates how universal the acts of mothering and love to be.
There are white cotton diapers everywhere, used for burp cloths or rolled up to keep the babies safe in their seats. In the refrigerator, there’s an entire shelf devoted to milk: four Avent bottles for Bennett, because the nipple is the only one he can manage, four preemie bottles from the hospital for Avery, because these are the ones he prefers, and four sippies of chocolate milk for Carter, so he can feel included. . . . The baby books advise me to keep track of diapers, which is so impossible it’s funny. I can’t even remember what day it is. I move from one thing to the next, one task in front of me to another, and in this way we are surviving. I pump at three, six, nine and twelve. I only remember this because it’s multiples of three and I have three children.
With a writer’s attention to detail, Groneberg chronicles every day challenges common to all new mothers — not being able to get Avery to breastfeed, the stress of sleepless nights — as well as those that pertain specifically to Avery — government paperwork, the loss of a friendship, failed hearing tests. Of what to tell friends and neighbors, and how. “Explain what?” her husband says. “What’s there to explain? We have two babies, they are home, that’s our news. The people who know us, the people who are part of our lives, already know the rest. The ones who don’t know, well, maybe there’s a reason for that.”
Amidst the stories of baby care and family adjustments emerges the story of Avery, and, as the subtitle of Groneberg’s bookreminds us, how she found her way through her son’s first two years with Down syndrome. These adaptations include overcoming her own shame and ignorance, as well as that of others. They also involve learning about the inner workings of raising a child with special needs, the challenges of early intervention, therapies, and medical care. These are the details that would remain murky for a woman contemplating a prenatal diagnosis of Down syndrome, and by unveiling this world for the reader, Groneberg does some of her finest work.
As any mother of a child with special needs will attest, when given a diagnosis or set of challenges, it’s the stories from other mothers that offer the most support and solace. As Avery grows from a small baby to a little boy, the reader learns along the way so many essentials of caring for a child like him: navigating early intervention and what Groneberg aptly calls the “alphabet soup” of therapies, health concerns, feeding difficulties; correcting misperceptions on the part of others, including medical professionals; overcoming fears about limitations, delayed developments like walking or talking; mourning the child you expected; and accepting the child you have given birth to instead. In this journey, Groneberg questions her own conceptions and misconceptions about what is “normal” or “perfect” and how our society, in ways both subtle and obvious, rejects imperfection:
When we were first imagining twins, I decided I’d never dress them the same. I wanted them to be individuals, and one way I could support that, I thought, was to choose clothes for them as if they were singletons. Later, after Avery’s diagnosis, I received in the mail a gift that helped me rethink my strategy. The package was from my friend Kathy, a wonderful writer and quilter who had made two baby quilts for us. With them came a note explaining that while she usually makes the quilts for twins unique, this time she made them the same. She wanted to emphasize the things our babies share in common.
Even with matching quilts, Groneberg shows the reader how Avery and his development come under closer scrutiny than that of his twin. There is the matter of his crawling, which is delayed. Ditto fine motor skills like a pincer grasp. In a vivid scene, Groneberg details an assessment with early intervention, one in which Avery is graded with pluses and minuses on a series of skills, and, at one point, actually judged on his ability to “poke.” Groneberg thinks about what a doctor had said to her about Avery, how “they” eventually fall behind, and break your heart over and over. “The papers and their letters and the yes-or-no answers aren’t the whole story,” she writes. “They don’t capture Avery’s gentle, easygoing nature. They don’t mention how he sucks his foot. There’s no place to check off how he opens and closes his fist. . . The way his chin quivers when he cries. . . . The most important things don’t fit on any form; they are not quantifiable, or able to be gauged. But they count — they are the measure of love.”
Groneberg is the author of one previous book, My Heart’s First Steps: Writings That Celebrate the Gifts of Parenthood and also writes the popular weekly column,“A Little More” at Parent Dish. In her hands, and with her lyrical prose, the journey she tells becomes even more admirable. The details of her twin’s hospital stay are as vivid as those of long days and nights caring for three children, two of them babies. Amid the Sterisoap, bottles and breastfeeding, the reader, like Groneberg, comes to know what it means to care for these new beings, each of them different. Self-aware, candid, open and honest about her hopes and fears, the intimacy of Groneberg’s writing allows any new or expectant mother the opportunity to find her own potential worries mirrored in the writer’s experience. Groneberg is not a saint, she is human, and there is nothing omitted from this journey that a woman in Groneberg’s shoes would miss. In Roadmap to Holland the reader experiences the hard work, challenges, life-changing worries and fears that speak to every new mother — those that remind us that every new baby’s future is a mystery, some deeper than others.
In our era of choice, the ACOG guidelines push to the forefront some of the messier concepts surrounding the subject of reproductive rights: as a mother, would you choose to have a child you know will be visibly different? Would you elect to become the mother of a child with disabilities? If so, what emotions would arise? What fears or conflicts? As the NDSS position reminds us, the medical community is rarely equipped to guide expectant parents through the emotions and realities surrounding a diagnosis of disability. In many cases, even medical professionals are sorely misinformed.
It takes a mother, and one who has been there, to tell the real story of raising a child with disabilities, just as it takes a mother to show the universal nature of mother love. When you finish reading Groneberg’s story, and Avery’s, you can’t help but wonder if Groneberg had been advised to follow the new ACOG guidelines, what might have been different? Would Avery even exist? Would this story? Having read Roadmap to Holland, one can’t help but think how impossible it is to imagine the world without the boy, or the book. As Groneberg herself writes, Avery is the boy “she had wished for, yearned for, and yet when he arrives is wholly unprepared for, despite all the reasons [she] should have known better.”