I'll always remember that morning in the kitchen when my daughter, Johanna, was 20 months old. We had been trying to get her to walk for weeks and weeks, but she would only take one or two tentative steps before crumpling like a rag doll to the ground. Her physical therapist, Isabel, was across the room, encouraging her by shaking a box of graham crackers. Johanna stood with her back against the cabinets and glanced over at me nervously, her big hazel eyes owl-like behind her red glasses.
"Go for it, Jo Jo," I said wearily. I'd been up most of the night nursing her 3-month-old brother, Teddy. It was only eight o'clock, and I was already counting the hours until naptime.
Johanna hesitated for a moment, and then, with her arms thrust forward, she took six Frankenstein-like steps. I stood stunned, staring at the back of my daughter's blond ponytail. Then I knelt down to hug her.
"Yay!" she said, clapping her hands. I pulled away and looked at her -- her wide, upward-slanting, almond-shaped eyes, her button nose, her small rosebud mouth that hung slightly open. Her cheeks were wet, which I realized after a moment was from my crying. "I love you, Princess Johanna," I said.
"You know she'll do everything typical kids do," Isabel said softly. "Kids with Down syndrome -- they hit all the same milestones as everyone else. It may take time, but she'll get there."
I had learned over the previous 20 months never to underestimate my daughter. But it had taken me a while to get to this place. Johanna's diagnosis, delivered an hour after her birth, had seemed overwhelming. Infants with Down syndrome are more likely to have health complications, and Johanna had been born with an intestinal blockage that required immediate surgery. Once she was home two weeks later, our days were filled with doctor's appointments and therapy sessions (she was automatically eligible for the state-run Early Intervention program). My husband, Jamie, and I had just moved from New York City to a Connecticut suburb where we didn't know anyone, which added to my sense of isolation. I liked the mothers I met whose children had Down syndrome, but it was hard to relate to them. Most had refused prenatal testing or had learned early on in pregnancy that they were carrying a baby with Down syndrome and were at peace with the diagnosis. But if we had known, we most likely would have terminated -- a fact that haunted me every time I looked at Johanna.
I loved my daughter, the way she cooed contentedly in my arms, and the reddish-blond fuzz on the top of her head. But what really scared me was the unknown. Every book I read or website I visited seemed filled with terrifying information about raising a child with Down syndrome. I lay awake at night imagining Johanna suffering infantile seizures, or going into respiratory distress, or developing leukemia.