Recently, a friend passed along a 2003 article from the New Yorker, “An Enlarged Heart” by Cynthia Zarin, which was recently republished in her 2013 collection An Enlarged Heart. My friend thought that I would very much enjoy the narrative style and relate to the content of this story, which followed the author through her daughter’s unfolding medical crisis.
My friend was right. The story is compelling. The narrative style is captivating—engaging the stuff of the deepest darkest of parenting fears: something unusual and mysterious sweeping in and almost claiming your child before you have the chance to respond. It is about the place where I live many days with my own daughter…a place Zarin will, fortunately, only briefly inhabit. It can be a dark place…Zarin refers to it as a fairytale at one point. And I believe this comparison is apt because, while it is dark, it can also be beautiful…and there is much to be learned there. Like a fairytale, there are layers upon layers of insight into life, into our fears, into hope…if you are willing to look.
In this story, overnight Zarin goes from being a carefree parent on vacation—the kind of parent whose children can be watched by others, the kind whose children sleep safely once they are tucked into bed at night, the kind whose children seem to have bright futures spreading out before them—to the mother of a child who may be dying of a rare and poorly understood disease, Kawasaki Disease…a disease believed to onset due to an almost magical combination of genetic predisposition (a variation in the gene ITPKC) and a variety of potential mysterious external triggers.
The author’s style pleads for the reader’s understanding—as she sees her daughter come under the spell of the early unclear stages of the disease and then, later, as her fears that something more is wrong are confirmed in by medical professionals. It is not hard for the reader to capitulate. I understand all too well that mother’s instinct that “something” is wrong, even though it isn’t obvious…even though you cannot quite name it.

I read the story with compassion, crying as she described her ambulance ride—knowing the fear that seizes a mother’s heart when her child is gravely ill. I gasped as she described the feeling that somehow all of her previous good fortune had brought this emergency upon her, upon her daughter, because I understand the need to grasp at explanations while the plans you made for you child—so fragile and perfect—begin crumbling in your hands at the whim of a chaotic and unpredictable world.

Through her beautiful and sorrowful words, I felt her pain. 
I felt her pain, that is, until soon after she arrived at the hospital—when she meets her daughter’s roommate and betrays my compassion.
The hospital where her daughter was transported is our hospital—the hospital with Esmé’s fancy autonomic cardiologist and neurogenetic epileptologist and aerodigestive team. This is the place that took over when it was clear that Esmé’s care was too much for our local hospital to coordinate. This is the place that has left no stone unturned for my daughter. The place that has given us hope and community. The place that I credit with not just keeping Esmé alive—but with helping her to thrive.
You see, if the timing had been different—a decade or so shift, Esmé might have been the roommate in this story. I might have been the roommate’s, to use Zarin’s brutal language, “dumpy looking” mother.
The roommate in the story was not in the same situation as Zarin’s daughter. Zarin’s daughter experienced a potentially life changing event that offers three potential outcomes: the child lives but her heart is severely damaged, the child dies, or the child lives and can go on about her life with little more than a terrifying hiccup of a story. 
The roommate, on the other hand, I gather from her description, is a child, like my own, with a severe genetic condition. She is deaf and blind. She has dysmorphic features. At four years old she is walking “like a toddler.” It seems, in all likelihood, that this child has struggled since the day she was born.

Zarin’s daughter, in the beautiful sweetness and innocence that is only torn from children as they are met by the cruelty of the adults around them, sees the roommate and recognizes their commonality–not their difference, much to her mother’s horror: Our own child, in bed but awake, looks after her. “That girl is like me,” she says. We look at her aghast. She points to the I.V. in her hand. “She has a mitten, too.”

Zarin, seeing this child for the first time, sees only what is different about her. In her story she offers a few heartless words about the child: Her ears are too big for her face, and the lobes are pointed. How terrible, I am thinking, to bear such a child.

When I read this line, I instantly saw red. I imagined a hospital roommate thinking these things of my own daughter. I imagined meeting Zarin’s family in the hospital—and worrying about them, about how they are handling the stress of this terrifying new world of parenting a very ill child—and then, months later, seeing these words in print about Esmé. I wanted to call Zarin up and ask her how possibly should could expect compassion from me, the reader, about the fearful suspended animation of her life, while she finds the time to produce such callous and thoughtless words about a child who has clearly struggled since she drew her first breath. How could she possibly betray this child in this way? I wanted to call the New Yorker and ask how they ever put these words in print. I wanted to call the roommate’s family and tell them that their child is beautiful and perfect and a champion of her own story, not an anecdote of “how much worse it could be…”
But then I felt the faintest glimmer of hope. 
Might the author’s experience with this child change her? Might she just show us a glimpse of her thinking before—before coming to terms with how we are all, including her own daughter, not far from needing the love and compassion this child needs? Might she learn to see the beauty of her daughter’s simple assertion that this little girl is, in fact, like her?

She had, afterall, set up the scene as a magical story, describing her family in this hospital room, having “plunged, hapless, into a fairy tale.”

So, I clear my head, take a deep breath, and read on.

I become hopeful for a moment as she mentions: “Later, we will tell our friend Storm, a priest, about the little girl, and we will accuse Storm of sending her to us. For now, we are stunned.” I am hopeful that this little girl has shifted Zarin’s perspective more than just serving as a sign for Zarin’s good fortune.

But I am disappointed.

She never mentions this child again…she is relegated to the role of the monster in the story–a child, lurking in the shadows as a reminder of how very lucky Zarin is that her own child, fragile as she is in this moment, is not nearly so imperfect. 

With every word my heart sinks.
My compassion for Zarin’s daughter does not wane, of course, but I am no longer able to meet Zarin with sympathy. I am pleased to know that her daughter’s heart will be fine—relieved that it appears she will make a full recovery. This little girl will grow up and tell this story of how she almost died to her friends, her partners, her colleagues. Her future, it seems, is back on track. She may take her place, recovering from her imperfection.
Zarin is also back on track. She remains fundamentally unchanged by her experience. She is eager to return to her old life, with her once again healthy child…She seems all too ready to push aside the thoughts that I’d have her understand: That her child and the roommate are not all that different. That each girl is, first and foremost, a child—precious, beautiful, and deserving of unjudgmental love, compassion, and joy. Each girl fell prey to an unlikely happening—a genetic change, one more obvious than the other, making one different from birth…and building in a susceptibility to Kawasaki in the other. 
We are, all of us, a collection of such “what if’s” written into our genes.
Nothing is promised to any of us.
But Zarin misses the whole point. It is right in front of her, and she misses it entirely.
Instead she places the roommate in the category of “other,” of “damaged child”—of a sign of how much worse her life could have been had she had such a child…a sign of her good fortune that her own child will return to the familiarity of health. That no thoughtless person will look at her with pity and disgust and think: How terrible, to bear such a child.

All I can think is: How sad to be her…she could not see it.


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