Gillian is also giving away a copy of her book, so after reading her interview, leave a message for a chance to win.
1. Why did you decide to write this story?
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 conscious. 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.
2. You are a pastor’s wife. Was it difficult to share the hard parts?
While I was writing, and throughout the process, no. But I have to be honest, once the book 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.
3. What do your husband and children think of the memoir?
They are excited and supportive. My daughter Zoya told me the other night, “I don’t know what I am more excited about, Mom. The fact that you published a book, or the fact that my name is in it.” I’m thankful they are fans of my words.
4. Do you miss Ukraine? Will you ever go back to live there?
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.
5. What is the main takeaway of this book?
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.
1. Would you recommend this book only to special needs moms?
No, I think this book resonates with all sorts of people. Of course, special needs parents, but also anyone who has been taken by surprise in life. And who hasn’t?
2. Were you nervous for other moms to read that it took you a while to love Polly?
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.”
3. Why did you share so many of your struggles in the book?
Once the book published, and my struggles and sins were out there for all to see, it bothered me that people would know. But in the beginning of the project, when my husband Sergei and I agreed I would mold my writing into a book, we agreed I absolutely had to share the hard parts. I’m a person of faith. Without hard parts, the good parts aren’t as good. Without darkness, the light is not as bright. Those parts are where grace lives.
About Down syndrome
1. You parent two children with Down syndrome. Are you at peace with Down syndrome?
Yes, I think so. I don’t see Polly and Evie as kids with Down syndrome. They are simply my kids. That’s not to say that I do get discouraged sometimes about therapy and delays,
and the fact that our family can’t get up and go like others. But I love our children, and am thankful for our lives. Down syndrome plays a role in that.
2. What are the joys of parenting kids with Down syndrome?
Every milestone, no matter how small or big, is celebrated at our house. Polly is full of joy, and Evie’s smile can light up a room. My kids with Down syndrome (and my other two typically developing children) have taught me about kindness, trying hard, slowing down life, and being thankful for what we have. These were all lessons I still needed to learn in my thirties when Polly busted through.
3. What are the struggles of parenting kids with Down syndrome?
Health concerns are always in the back of our minds. Evangeline is nonverbal, and we are concerned we may never get to hear her sweet voice speak sentences. We find ourselves once in a while in the middle of something called chronic sorrow. Something comes up with our kids and we realize they do, indeed, have Down syndrome, and therefore life will be harder for all of us. Part of a life of special needs includes grief. It is a disturbing, but necessary realization. I don’t love my kids less. But do we struggle sometimes? Yes.
4. You speak to groups about bridging the gap between families affected by special needs and others. Why? What is your message?
I speak about bridging the gap between families affected by special needs and others because to put it bluntly, there is still often times a gap. My message is that communication and education are key. I talk about opening up conversations with friends and family who have kids with special needs, and about teaching our kids how to be good friends to individuals with special needs. I guess I just share my experience, and let people know that I have my foot in both camps of parenting … The gap doesn’t have to be an abyss.
5. October is Down syndrome Awareness month. Does your family do anything special to raise awareness?
Yes! I usually go to Polly’s class and read a book about Down syndrome and send home a hand out explaining Down syndrome in kids’ terms and encouraging parents to talk about it over dinner. In the last two years, Polly and Evie’s sisters Elaina and Zoya have took it upon themselves to create and present similar presentations to their classes. Warms a Mama’s heart!
Gillian is giving away a copy of her book for our IDSC members. All you have to do is leave a comment here.We will draw a winner October 8th using random.org Make sure we have a way to contact you if you win the book!
Give-away is now closed.
Find Gillian's book HERE.
Bio: 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 www.gillianmarchenko.com.