Complete disbelief

We had been ambivalent parents, Jamie and I. We were in our mid-thirties when we married, self-absorbed and career-driven. Soon after our wedding, at the urging of my ob-gyn, I went off my birth-control pills. "I'm 34 -- it'll take me six months to get pregnant," I told Jamie, but six weeks later I was staring at a pink line in my home pregnancy test. I knew I should feel overjoyed, but I was terrified. I'd never had a strong urge for a baby, never wandered into a children's clothing store to finger tiny sweaters and baby booties. Over the next couple of weeks, we voiced our worries to each other. Would we have the patience to be good parents? Were we really committed to having a child in our lives? Then, at seven weeks pregnant, I woke up to severe bleeding. Several hysterical calls to my doctor later, I lay silently on an ultrasound table while the technician happily pointed out the fetal heartbeat. When the tears came, I was stunned -- suddenly I realized how much I wanted this baby.

When I found out I was carrying a girl, we decided to name her Johanna, after Jamie's grandmother, Chana, who had escaped from and fought the Nazis during the Holocaust. I fell into daydreams about my daughter and what she would be like: Blond and long-limbed like me, sharing my passion for words and running. She would inherit my husband's daredevil impulses, his love of speed, his proficiency as a skier. She would have our stubborn, determined, type-A personalities.

But now a team of doctors was in our delivery room, and with each word it became clearer and clearer to us that she would be none of these things. We stared at them, disbelieving. How could this happen? All of the blood-screening tests and ultrasounds had revealed nothing. Because I was 34, I had asked for an amniocentesis test, only to be reassured that there was no need, that everything looked "perfectly normal." The rest of the pregnancy was uneventful.

"If we had known, we would have terminated," my husband said. The doctors nodded, looking uncomfortable. There was nothing else to say.

An hour later, I sat numb on my bed in the maternity ward, watching my husband's shoulders shake with wrenching sobs. I'd never seen him cry before. He lifted his head and looked at me. His eyes were dead. "How can we, the two least patient people in the world, parent this baby?" he asked.

What could I say? He was right. We were the type of people who expected their kids to be toilet trained by 18 months and reading by 3. How could we have the tolerance and compassion needed to raise a mentally disabled child? I knew virtually nothing about Down syndrome, other than it was associated with certain health problems and that 50 years ago, babies born with it were packed off to institutions. That night, restless despite the sleeping pill I'd been given, I went to the NICU to see my daughter. She lay on her back, her body covered in tubes, and she was screaming. The nurses swaddled her in a blanket and gave her to me, and she quieted, falling asleep in my arms. "She knows you're her mother," they said. But I just stared at her. I didn't know this dark-haired, swollen baby. Where was my blond cherub, my Johanna?