An unusual story of a Down syndrome diagnosis

(This is another excerpt from my book KRASATA, a memoir of motherhood, Down syndrome, and surprising beauty. It takes place in Kiev, Ukraine, after the birth of our third daughter while living there as missionaries.)

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On the sixth morning of Polina’s life, I stood next to her incubator in Kiev, Ukraine. My hand pushed through the plastic window and rested on her ankle. My fingers cupped her heel. She opened her eyes. It made me smile.

I got up that morning and came to check on Polly first thing like usual since we had been in the hospital after my emergency C-section. Nurses rushed around changing babies and fitting clean sheets on cribs in the two adjoining rooms. Their movement made me weary. Sensing someone behind me, I turned. It was Polly’s doctor.

“Dobroye Utro,” I said, greeting her in Russian with a smile. The Doctor stood staring down at her white shoes. She sighed, looked up, and fixed her eyes past me.

I am afraid of heights. My fear is shared with others in my family; my father, my oldest daughter. In middle school I was the kid who wouldn’t go on rides at the amusement park. I pretended to prefer the carousel, but everyone in my class knew I was scared. I’m even a little jumpy in elevators.

The doctor started to speak. Her Russian was hurried, making it difficult for me to follow her. “K Sashaleneeoo, Gillian, ooh vashoo dochkee syndromom Downa.” No good morning, how are you today. No, will your husband be here soon because there is something I’d like to discuss with you.

Her only words were, “With disappointment, Gillian, your daughter has Down syndrome.”

I let go of Polina’s heel and pulled my hand out of the incubator. I took a step back, like I was stepping off a cliff.

Sometimes I dream I am falling. It’s said that if you hit bottom in your dream you are dead in real life. But I wasn’t asleep. I was very much awake.

I stared at the doctor, blinking. Maybe I misunderstood her? The test results were positive? Polly had Down syndrome? I hit bottom. My hope that Polly wouldn’t have had Down syndrome died.

No! I don’t want this. I don’t want to have a disabled child! I don’t want to be the old mom in Wal-Mart with the adult child shuffling behind her. Scanning the nursery, I was alone in the midst of a group of nurses going about their routine. A regular work day for them. The last regular day of my life. Where was Sergei? I wanted to hide but there wasn’t any place to go.

The doctor stared at me. “So, what do we do now?” I asked, feeling like I needed to say something. She started talking, but I could not understand a word she was saying. Not wanting to fall, I stood with my feet planted on the white tile. My legs pushed my shoulders upward while gravity pulled me down to the ground. I wanted to fling myself on the floor, bang my fists and tear my clothes, but I didn’t dare move for fear of crumbling.

The doctor paused. Say something, Gillian, I told myself. “Spaseeba.” I choked out. Thank you? That’s it. I was just told my baby had Down syndrome and all I could say was thank you. A better mother, I thought, would have probably bent down and drawn close to her child. She would meet her baby’s sleepy eyes and vow to protect her, to treasure her.

I, instead, separated myself from Polly. My feet were at once unstuck and I darted out of the room without even a glance back at the baby. I couldn’t look at her. If I did, I feared I could have turned to salt, like Lot’s wife in the Old Testament when she glanced back to her city while fleeing.

I was like a woman on a television show who dies, and then watches people fuss around her dead body. I watched her run to her room. She flung herself down on the hospital bed and howled. I hovered above her, willing her to stop crying. At that moment, that woman was not a person with faith in God. She was someone abandoned.

I had already believed in Jesus for over half of my life. I attended church. I read scripture. I went to Bible College and became a missionary and then later a pastor’s wife.

My faith was more than a career. I believed in Jesus. I believed in him like John Lennon believed in giving peace a chance. I believed in him like Democrats believed Obama during his Yes We Can speech after winning the presidency. I believed in Jesus. And yet, when told that Polly had Down syndrome, my faith buckled with my legs.

C.S. Lewis writes about the loss of his wife, Joy, in A Grief Observed:

“I thought I trusted the rope until it mattered to me whether it would bear me. Now it matters, and I find I didn’t.” – page 37

While waiting for the test results for six days, assorted scenarios played out in my mind. I talked to my mom and Sergei both about the possibility of Polly having Down syndrome. If she did, we’d move back to America for her care. Or maybe we’d stay in Kiev. I’d research services provided here for families with disabled kids. I’d find a way to make it work. I made plans and weeded through logistics. I put together a list of things to do once we got out of the hospital: apply for an American passport for Polly in case we wanted to go to the States, get her in to see the American pediatrician that lived in Kiev.

But not for a second, did I consider how it would feel to hear that my baby had Down syndrome.

In my room across the hall from Polly, nurses surrounded me as I sobbed on my bed. One patted my arm. Another handed me a plastic cup filled with purple liquid. It looked like a communion cup from church.

Russian mutterings swirled above me, “neecheevo, pearestine krechat,” –it’s nothing, stop crying. I once again found myself deaf and dumb. Dazed, I gulped down the thick liquid. Polly’s doctor stood closest to my head on the left side of the bed.

“Stop crying!” she said. “Yes, it’s terrible that your daughter has Down syndrome, but you have options. You can terminate your parenting rights or take her to live in the village. Take her some place quiet. She’ll play. Life is slow there. Now, stop crying!” Everyone around me nodded and patted me, muttering again, “neecheevo, Gillian, neechevo.” It’s nothing, Gillian, it’s nothing.

I came back to myself and thought about Sergei and Elaina and Zoya. What have I done? What were we going to do?

Sleep, God whispered to me. Sleep.

I closed my eyes.

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