We’re honored to have Gillian Marchenko with us as we kick off our new weekly feature, Faces of the Movement. Every Sunday night/ Monday morning we’ll be introducing our followers to a ministry leader or parent making a significant contribution to the disability ministry movement. Gillian has been gracious enough to lead off for us.

Gillian is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. 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. Her book, Sun Shine Down, a memoir, was published by T. S. Poetry Press earlier this month. Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.

Here’s our interview with Gillian…

C4EC: What have you learned about God through your experience as a mom with two girls with Down syndrome that surprised you the most?

GM: I’ve really come to plead for and rely on this part of the Lord’s Prayer: Give us this day our daily bread. What I’ve learned through parenting kids with Down syndrome, what I think I probably knew cerebrally as a believer but now relay on concretely, is my daily need for God. There’s just no way I can parent without him. He shows up every day, with just the manna I need. The trick is not forgetting. He’s always there, but sometimes, sadly, I stand him up for other things. The good news is, he’s there again the next day, regardless of parenting fails or wins.

C4EC: 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?

GM: I wrote a little bit about that in my memoir Sun Shine Down:

“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.”

C4EC: What do you say to mothers who are struggling with the challenges of parenting a child with a special need when they don’t have the faith you have to fall back on?

GM: I’d say let the baby change you. Find community. Talk openly with someone about your feelings. Care for your child. Don’t disconnect.

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What if? What if you dreamed of having a beautiful child and in your mind you saw the life you’d share with that child. First steps, little league (or ballet). Maybe the child would play piano or make you proud on the Honor Roll. There’d be eventual graduations, college, even marriage and grandchildren. You might dream it out that far. Or not. Every parent has hopes. No parents wish for pain—their own, or a child’s. Then you had a premature delivery in a foreign country. And the words swirling around you said a different kind of “what if.” What if something was wrong? The dream was at risk—or so it seemed. Would you be ready for that? Could you make peace? Or would it take you down? These are the questions author Gillian Marchenko faced as she woke up after an emergency C-section in Ukraine. Only her newborn child could answer them, in time. But first she had to find a way to hear more than the words “Down syndrome.”

Sun Shine Down: A Memoir, by Gillian Marchenko. Available in paperback and for Kindle at Amazon.