[easyazon-image align=”left” asin=”0989854205″ locale=”us” height=”333″ src=”http://ecx.images-amazon.com/images/I/31w8Ud05-ZL.jpg” width=”216″ alt=”Gillian Marchenko” ]Whole People to be Wholly Loved
A Review of
Sun Shine Down: A Memoir
Gillian Marchenko
Paperback: TS Poetry Press, 2013
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Reviewed by Ellen Painter Dollar
I’ve spent many years listening to stories told by parents whose babies are diagnosed, before or after birth, with genetic conditions. Many of those stories feature medical personnel who seemed unable to see such a diagnosis as anything but tragic. Despite the progress we’ve made in making it possible for people with disabilities to fully participate in American society, strong biases against those with genetic differences remain. It’s discouraging. What’s even more discouraging is that, in other cultures, such biases are even more entrenched, as Gillian Marchenko, author of the memoir Sun Shine Down, discovered when she gave birth to a daughter with Down syndrome in her husband’s native Ukraine.
As Marchenko and her husband, Sergei, sat alone in their hospital room shortly after learning of their third daughter’s diagnosis, they recalled rarely seeing anyone with an obvious genetic condition or disability in Kiev. Sergei explained that strong taboos around disability mean that women have amnios and then abortions, forfeit their parental rights after their babies’ birth, or at best, send their children off to less-populated villages to be raised by relatives. The hospital pediatrician greeted the new parents with a look of pity followed by sharply worded reminders that Marchenko can “terminate your parenting rights or take [your daughter] to live in the village.” Another doctor who visited the young family at home a few days later apologized that no one caught “this mistake” in time to allow them to abort.
Sun Shine Down is the story of Marchenko’s tentative journey toward knowing and loving her daughter, Polly. She and her husband pushed back against their Ukrainian doctors’ pessimism, moving back to the U.S. and securing early intervention services for Polly. But Marchenko still struggled to “see the blessing” in her child, as the mom of an adult daughter with Down syndrome assured her she would. She went through a period of heavy drinking, afraid to stop because of how alcohol fueled her emotions. “Without alcohol,” she writes, “I couldn’t take [Polly] in my arms and claim that gooey, newborn love—the wonder of new baby toes and the joy of shampooed baby hair. The stuff that a new mom should feel. The stuff I was void of.”
Marchenko describes a turning point one morning when, dancing and giggling with Polly in the Christmas tree’s glow, she felt “cracked open,” able to see and delight in her daughter as “a baby, as my baby,” instead of as a child with Down syndrome. Marchenko recalls, “I thought about the words I had taped in my journal after we found out in Ukraine that Polly had Down syndrome, ‘The sun will shine again.’ I had wanted to believe them, but at the time it was impossible. How could my stunned, cold heart ever have felt the warmth of a love as bright as the sun? But now, sitting on the couch and playing with my sweet daughter on an ordinary morning two weeks before Christmas—the time when everything freezes—it was happening.”
When I was asked to review Sun Shine Down, my first thought was, “Good grief. Is there any writer who has had a baby with Down syndrome who hasn’t written a memoir?” It was an uncharitable thought, but not a completely unreasonable one. Down syndrome is the most common genetic condition, and stories by and about families living with the condition are very common in disability literature. I have read a half dozen other memoirs about Down syndrome (along with countless articles and blog posts about this condition and others). While the details of each family’s story are of course unique, they are all, in some sense, telling the same story that Gillian Marchenko tells in Sun Shine Down—the story of parents loving their child with Down syndrome as their child, not as a tragedy or a diagnosis or an object of pity.
I have no doubt that Sun Shine Down will be a welcome, even essential, book for other families stunned into uncertainty by a Down syndrome diagnosis. Beyond that, the story Marchenko and other parents have told is an important one for our culture. We may be doing better in terms of embracing children with genetic anomalies than the medical establishment of the Ukraine, but not that much better. We need to hear, over and over and over and over again, that babies with Down syndrome and other genetic conditions are not tragedies to be mourned, much less abandoned, but rather whole people to be wholly loved.
But despite solid and graceful prose, Sun Shine Down lacks the qualities that would entice readers from outside the Down syndrome/disability community to read it—a particularly captivating voice, for example, or additional material to broaden the story. For example, in her recent memoir about her son with Down syndrome, Raising Henry, Rachel Adams reflects on her prior academic study of carnival “freaks” in examining how our culture views people with obvious differences, and how such people view themselves. Amy Julia Becker’s memoir about her daughter’s Down syndrome diagnosis, A Good and Perfect Gift, parses her own Ivy-League–fueled bias toward intellectual achievement to examine why we are so terrified by disorders that affect cognitive development. (Becker also delves into theological notions of perfection. While Sergei Marchenko is a minister and Christian faith is central for the family, that faith receives little direct treatment in Sun Shine Down.) By broadening their families’ stories in these ways, Adams and Becker invite readers into the story, to contemplate and question their own assumptions. While these memoirs clearly have a large audience among other families affected by Down syndrome, they also have at least the possibility of appeal to a much larger audience that also needs their stories. The story in Sun Shine Down, while aptly told, is too limited to invite in many readers without a specific interest in Down syndrome, or genetic conditions and disabilities in general.
The allure of a great memoir is that the memoirist tells a story that is both utterly unique and utterly common. The memoirist uses his or her unique story as a framework for observing and magnifying truths not just about his or her life, but about life, thus captivating readers whose stories are markedly different from the author’s. By this measure, Gillian Marchenko’s Sun Shine Down is a lovely memoir, but not a great one.
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Ellen Painter Dollar is author of No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction (Westminster John Knox, 2012) and co-founder of #ItIsEnough, an informal coalition of Christians using social media to keep issues around gun violence and the need for stronger gun laws on the national agenda.
C. Christopher Smith is the founding editor of The Englewood Review of Books. He is also author of a number of books, including most recently How the Body of Christ Talks: Recovering the Practice of Conversation in the Church (Brazos Press, 2019). Connect with him online at: C-Christopher-Smith.com
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“But despite solid and graceful prose, Sun Shine Down lacks the qualities that would entice readers from outside the Down syndrome/disability community to read it.”
Such an interesting statement, really. More a stab at evaluation of society than of the book, perhaps. And, ultimately, not true. (Except perhaps of those who can’t find a story outside their own particular experiences to be of interest.)
I could not disagree more with your opinion that this book, which I have read, is not broad enough to attract a wide audience. This is Marchenko’s story; it is not intended to be about the role of the family’s faith (though I’d dare to say faith runs like a thread throughout this book). And how unfair to find fault because this memoir lacks a look at cultural assumptions about Down syndrome. Inclusion of such material may work just fine in Henry’s book (I’m familiar with it); it would only serve to distract from the very personal experience Marchenko is relating. I am an avid reader of memoir and I don’t go to memoir for the reasons you find fault with this one. I’ve read all of “Far From the Tree”, Andrew Solomon’s magnificent book that includes a chapter on Down syndrome; the narratives in that combined with Solomon’s perceptive and brilliant larger examination of the issues are right for that book but that book is not memoir, and had Marchenko taken up others’ stories she would only have diffused and lessened her own.
This review sounds like the reviewer is jealous that another (better) book has strolled into their perceived fiefdom. Ellen, your review smacks of someone being a peevish crab low in the bucket.
Why is it that when a person writes a less-than-gushing review, s/he is invariably accused of breaking one or other of the commandments (ie. envy)? How tiresome and unfair. See also: http://rachelmariestone.com/2013/06/19/christian-critical-female/
I actually prefer memoirs that magnify life’s truths through the narrative rather than via an added critique that takes me out of the moment and reminds me that the author is providing retrospective “educational” information. Sun Shine Down is pure story rather than a critical essay swathed in the memoir format. Marchenko’s book seems like it would be more interesting to those outside the Down syndrome/disability community specifically because it uses storytelling to do its work. It reminds me of Stephanie Nielson’s Heaven Is Here, in that way.