While we waited for Polly’s test results, friends and family came to visit. Ukrainians brought food. Americans brought cards. My friend Raya brought ice cream and sat on the edge of my hospital bed while I fumbled for words Russian, nodding and agreeing. Understanding without words.
Visitors would tip toe into Polina’s sick room wearing blue paper robes, wash their hands in hot soapy water for a minute and walk slowly up to her incubator. Some smiled when they saw her. Some prayed. Many asked questions and got very interested in the equipment. Others were silent.
Then we’d walk back to my room and talk about the delivery, her condition, how I felt and how this whole situation was affecting them.
I found myself wiping away tears, quoting Bible verses, comforting, trying to make some sense out of our circumstances for their sake. It was easy to be more positive because we didn’t know for sure if our daughter had Down syndrome. When I convinced someone else of God’s love and grace and help, it convinced me for a little while as well.
It was hard too, because I tired quickly and sometimes I wanted to say, “look, at the end of today, you are going home to your usual life where nothing really has changed. I will still be here quite possibly for the rest of my life and I can’t be bothered with supporting you.”
Don’t we all go through life feeling entitled? When things happen outside of one’s plan, others around that person think, “poor her, poor him.” I am not a gambling gal, but I would put a hefty wager on a person’s second thought, “thank god it’s not me.” I imagined people coming to my hospital room or calling, heartfelt sadness and fear in their voices. I imagined their thoughts of sympathy for what they would assume was our misfortune, fervent prayers on our behalf and then I imagined them later on that day, plopping down in front of the television with a nice snack, laughing at a rerun of Everybody Loves Raymond.
But they tried.
Everyone had a story about kids with Down syndrome. Many people told us those who lead normal lives. Some kids go to college, live on their own, hold jobs, make their own lunches. The first time I talked with my brother from California he reminded me of the show I loved in middle school that starred a guy with Down syndrome named Corky. Another very good friend told Sergei and me about a girl he knew who is a real cool kid. “She can talk and everything”, he said.
I felt like people were saying albeit sub consciously “you have a kid with Ds, but we are painting a picture of her, making her as normal as possible. “You are going to have the smartest, most well developed child with Down syndrome ever raised!”
And I wanted to hear it. It was helpful to hear about families who adjusted to this twist in life. To know that there are people who are happy and feel blessed with their children.
Then well wishers hung up and went home and I sat in my tan hospital room across the hall from my little girl in her plastic house.
But I wasn’t alone. Without invitation, even against my will, Jesus was in the hospital room with me, uninvited, quiet. He did not demand or even expect my attention at a time when everyone else did. He let me cry. He stood close to me. He held my hand, strong but smooth. His grip was tight. And I knew he was with Polly in her room too.
During those times I felt strong, in spite of myself.
I may have even thought once or twice that we were going to be OK regardless of the test results.