Yesterday, in Part I of my two-part interview, Gillian Marchenko shared her reasons for and approach to writing her memoir and first book Sun Shine Down (T.S. Poetry Press, August 2013), the meaning of the title, the audience for the book, and what makes her account stand out from other published stories of parenting a child with Down syndrome. Today, in Part II, Gillian concludes our interview, which was conducted via e-mail, by discussing her feelings on learning that her daughter Polly has Down syndrome, her use of alcohol to avoid her confused and disturbing feelings about her child, what life with Polly has been like since moving beyond the period covered in the book, the most important lesson Polly has taught her, how she regards the sometimes shocking attitudes she encounters, her concerns about special-needs services in America, and her new writing projects. I thank Gillian for her honest and insightful responses to my questions, which I hope encourage others to read and share Sun Shine Down and discuss its important underlying message.
Interview with Author Gillian Marchenko, Part II
Maureen Doallas: Gillian, you write frankly and honestly about your feelings toward your daughter Polly after her birth, which is when you first learn she has Down syndrome. What do you think most influenced those feelings?
Gillian Marchenko: What influenced my feelings the most when I first learned Polly has Down syndrome were the element of surprise and the lack of education. I didn't know much about Down syndrome and, upon hearing the news, [I found myself having to deal with] cultural assumptions about disability — more so in Ukraine but also in the United States — as quickly as [facts about] the baby. The Ukrainian hospital where I delivered had no information for us about Down syndrome; nor [did the hospital hold] the belief that our child was worth keeping. My surroundings surely fed into my initial feelings.
MD: Do you think your experience after Polly's birth would have been different had you known in advance that your daughter would be born with Down syndrome?
GM: I'd like to think our experience after Polly's birth would have been different had we known in advance about her disability. I assume we would have been better educated and prepared, leaving [us] room to welcome the baby and focus on her.
MD: Do you advocate for genetic testing and counseling?
MD: Do you advocate for genetic testing and counseling?
GM: Genetic testing and counseling can be excellent resources for families. What concerns me is that a good [number] of medical professionals still consider children with disabilities as undesirable and "throw-aways". I advocate for up-to-date, thorough, honest information for families before and after birth.
MD: In Ukraine, where your daughter was born, the attitudes you describe toward persons with disabilities might shock some readers. The attention you received from medical professionals post-delivery might be described as "gruff" at best. The culture, as you so clearly portray it, simply doesn't see persons with disabilities. In the years since Polly's birth, have you seen any signs of a cultural shift in perspective? Of any changes you have seen, what have been most positive?
GM: I don't believe I am qualified to answer this question, because I have only been back to Ukraine for about seven weeks in the last seven years since Polly's birth. But I have contacts and friends and family there still, and they report that strides are being made. A friend who has a son with autism recently took her family to Kiev to facilitate a conference for families in Ukraine who live with autism. More than 300 people showed up! I'm encouraged that more people seem to be keeping their kids with disabilities, and my husband and I are exploring ways to return to Ukraine to help educate and support people there about special needs.
MD: You also expose in Sun Shine Down your vulnerability to alcohol, how you drank to excess to numb yourself to your feelings. How did you finally succeed in breaking the alcohol's hold?
GM: Once I realized, through well-meaning friends and a pissed-off pastor-husband, [how much I was drinking and] that [my use of] wine was becoming a dangerous mechanism to escape from my grief, it wasn't that difficult to tone down my consumption. Instead of drinking Chardonnay, I hung out with my husband, went for walks, read the Psalms, took baths. I replaced my wine habit with other things before it progressed to full-blown addiction. I abused alcohol for about six weeks (I have it chronicled in my journal from that time). I could easily have become dependent. Thankfully, I believe by God's grace, I did not.
MD: The period of time you cover is tightly focused. In the years you don't write about, what has been your greatest challenge in raising Polly?
GM: When Polly was three years old, six weeks after we brought her new sister Evangeline home from Ukraine, she had a catastrophic stroke and was diagnosed with a second syndrome called Moyamoya, a long-term disease that thins the arteries in the brain to the point of [causing] strokes and seizures. Two brain surgeries and six months later, Polly was convalescing nicely and has now been stroke-free for four years. To date, that was the most difficult time raising Polly: I was faced with the understanding that I might lose the baby I didn't want and now didn't think I could breathe without.
MD: What is the most important lesson Polly has taught you?
GM: To love.
MD: Considering your experience and what you and your family have learned, what do you say when you meet for the first time a new mother or father who is the parent to a child with Down syndrome or another disability?
GM: I say a lot of thing. Two main ones are: "Congratulations!" and "It is OK if you are struggling with this. Let the baby change you."
MD: What concerns you most about treatment and support services or other resources for Americans who are parents of children with disabilities?
GM: It depends on the state, the hospital, the doctor, the special education classroom. Overall, I am concerned that up-to-date, relevant information be available about Down syndrome and other disabilities across-the-board.
MD: Is there likely to be a sequel to Sun Shine Down? What are your future writing goals?
GM: Right now, I am working on two projects. My agent is waiting on a book proposal and sample chapters about my personal struggle with depression as a pastor's wife and a missonary. With this project I hope to convey that just because people of faith struggle doesn't mean they are not people of faith.
I also have written about 60 pages of Evangeline's story. [Evangeline is Gillian Marchenko's adopted daughter with Down syndrome; Gillian introduced Evangeline in the Epilogue of Sun Shine Down.] I hope that those who love Polly's story will one day get to read Evangeline's as well.
Sun Shine Down is available in print and for Kindle.
Recipient in 2012 of The Ethel Herr Most Promising New Writer Award*, Gillian Marchenko writes and speaks about and is an advocate for the needs of individuals with special needs. Her writing has appeared in Today's Christian Woman, Thriving Family, Connections Magazine, Chicago Special Parent, Charlottesville Family, and other publications. Gillian lives in Chicago with her husband Sergei and their four daughters.
* Sponsored by Kathy Ide's Christian Editor Network
Gillian Marchenko Website