Today is the first of October. The month of colorful fall foliage, apple cider and cinnamon-sugar donuts, pumpkins and cornstalks, and Halloween.
It’s also National Down Syndrome Awareness Month. Since DS became a part of my life two years ago, I’ve read several memoirs. Each book offers a different perspective. This past month I had the privilege of reading a new book by Gillian Marchenko titled Sun Shine Down.
It usually takes me a couple of weeks to finish a book. Once I picked up Sun Shine Down; however, I couldn’t put it down. What set this memoir apart from the others is that Gillian was living in the Ukraine at the time of her daughter’s birth–a country where children with DS are institutionalized at a very young age. Gillian received a birth diagnosis. In addition to the diagnosis, she received little support and comfort from the hospital, and her daughter was in the NICU for six weeks. Gillian struggled with the diagnosis, even after her return to the states. Her writing is raw and honest. She doesn’t make apologies for how she felt. Yet her writing shows that after the clouds disappear, the sun will shine down again.
Below is an interview with Gillian. Leave a comment at the end of the post for a chance to win a copy of Sun Shine Down. Also, look for a guest post from Gillian next week that tells how she and Polly are doing today.
Q. Why did you decide to write this story?
A. E. M. Forster said, “How can I know what I think till I see what I say?” I am a life-long journal keeper, but after the birth of my third daughter and her diagnosis of Down syndrome, writing became necessity. The first year of her life I wrestled a hallowing grief over the child I expected and the mother I was to become on the page. My journaling delved deeper as my daughter grew. Images, situations, and details bobbed up to the surface of my conscience. A fear of brokenness; broken people, broken things, and ultimately, my own broken heart, had been tucked inside me since childhood. I wrote, and a thought nagged. Perhaps these words were meant to be read by others?
A memoir emerged.
Q. Were you nervous for other moms to read that it took you a while to love Polly?
A. Yes, that still makes me nervous. I know some will read Sun Shine Down and think that I was self-centered, uncaring, and stupid, because I was. But I have to believe that if there are moms angered by my story, there are probably twice as many thankful that someone was honest enough to talk about the hard parts. I have a quote in the book that I whole-heartedly promote: “I know of other mothers who had children with special needs and right away they loved them and decided to fight for them. That’s not my story.”
Q. You are a pastor’s wife. Was it difficult to share the hard parts?
A. While I was writing, and throughout the process, no. But I have to be honest, once the book was published, and my struggles and sins were out there for all to see, yes. In the beginning though, when my husband Sergei and I agreed I would mold my writing into a book, we also agreed I absolutely had to share the hard parts. Without hard parts, the good parts aren’t as good. Without darkness, the light is not as bright. Grace lives in the hard parts.
Q. Do you miss Ukraine? Will you ever go back to live there?
A. Yes, our whole family misses Ukraine. We would love to go back, but when Polly was around three years old she suffered a massive stroke and was diagnosed with a second syndrome called Moyamoya. She endured two brain surgeries and is doing phenomenally well. But chance of stroke is there, and so it is best for us to stay in the States. That said, if we hear from God and he tells us to go, we will listen. We also plan on short-term trips, especially to facilitate seminars and support groups for families who choose to keep and raise their children with special needs in Ukraine.
Q. If you could go back in time and have a conversation with yourself, what would you say now to comfort and encourage the Gillian who had just given birth to a child with a disability in a foreign country?
A. I wrote a little bit about that in my memoir:
“I wished she’d (Polly) been cheered for, smiled at, and loved from the moment of her first breath. I wished for a do-over. I wanted to do her birth again. I would wake up the morning after her birth in Ukraine, thankful for the gift of a child. I would be more present and open-minded. I wouldn’t cringe when I heard about the possibility of Down syndrome. I wouldn’t make snap judgments that imagined a little girl standing off to the side of life staring blankly with her tongue sticking out, as if that defined the quality and pleasure of her life. Instead, I would imagine my daughter: an adorable girl with sassy, hot pink glasses, who loves music and has a keen sense of humor and the desire to be a good friend. If I were allowed a do-over for Polly’s birth, I wouldn’t run to my bed and curl up into a ball upon hearing her diagnosis. Instead, I’d bend down and place my hand on her chest and vow to love and protect her. I would thank God for her. I would assert that even though difficulties would arise, I would be privileged to be Polly’s mother.” Sun Shine Down, page 124
Today, if I could go back in time and have a conversation with myself about having a child with a disability, I’d say this: “Give it time. It is OK to grieve. But love your child. Let the baby change you. And know that God has a plan to use you and your child that is beyond your comprehension or ability.”
Q. What is the main takeaway of this book?
A. Goodness, tough question. What is the main takeaway? I think that depends on the reader. The essence of Sun Shine Down is this: I didn’t want my baby with Down syndrome, and now I can’t imagine life without her. The takeaway could be many things. I’ll let the reader decide their own takeaway.
Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. Her book, Sun Shine Down, a memoir, published with T. S. Poetry Press in the fall of 2013.
She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record. Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.
Follow Gillian and her family at http://www.gillianmarchenko.com.
The book giveaway has ended. Congratulations to Michele!