We found out that our baby was a girl at my 20-week ultrasound. It was probably then that I started to envision her future. I slipped into assumptions that she, as our first child, would be verbally precocious, walk early, and impress other people with her abilities. Maybe someday she’d go to Princeton and be an English major; maybe someday, we’d discuss books together. Maybe someday, she would be just like me.
Two hours after she was born, the doctors pulled my husband out of the room. He returned, eyes filled, and said, “They think Penny has Down syndrome.” And all my assumptions, all my subconscious connections to who-she-will-be, were swept away. The doctors gave us two guarantees about her development: low muscle tone and mental retardation. She wouldn’t be an athlete like her dad. She wouldn’t be a student like me.
But Penny’s diagnosis called into question much more than my assumptions about our daughter. They called into question my assumptions about myself.
In May of that year, four months after she was born, I was taking a walk, grateful that the barrenness of winter had turned to green. I was thinking about Penny, about the hard work she was doing to learn to hold her head up, to track objects with her eyes, to keep her tongue inside her mouth. By then, she had been evaluated by different therapists, and one came weekly to give me exercises to do with her every day.
Much as we worked, and with incremental progress — today she grabbed a ring overhead! today she pushed her torso off the floor! — her body retained its floppiness. A doctor friend had described low muscle tone to me this way: “Think about her muscles like the engine in a car, say, a Hyundai. Then think of the engine in a Ferrari. Both engines can get the car to go 60 miles per hour. But the Hyundai will take longer and work harder to get there.”
As I walked that spring day, I was thinking about all the things Penny wouldn’t be able to do, all the things that had come so easily to me. I remembered when I received my early-acceptance letter to Princeton. It was over Christmas vacation, and I had been home alone when the mail arrived and could celebrate only by myself. I didn’t cry out or jump up and down. I just let a grin spread across my face, delighted, but also self-satisfied, as if I had known what the letter would say. As if I deserved it.
That was the thing. I thought I deserved it. I remembered all the hours of studying and forgoing social events for homework and doing independent projects with teachers, and thought my achievements were due only to hard work. But I had no doubt Penny would work just as hard as I had, maybe harder. And she would never go to Princeton. It wasn’t just about hard work. It was about background and genetics and chromosomes and opportunity. And as I took in the simple beauty around me — the little white heads of lilies-of-the-valley peeking toward the sunlight, the chirping birds — it came as a shock, almost an affront, to realize I hadn’t earned my intelligence, my socioeconomic status,
my family history, my musical ability. They were gifts. I
had choices in how to use them, sure, but they were gifts nevertheless.
Penny is 4 now, and I have a hard time believing that such great fears rose up within me after she was born. I no longer think of Penny in terms of what she won’t be able to do. I think about who she is, this little girl with glasses and an eager smile who likes to tickle her younger brother and read books out loud. I think about whom she knows, about the kids at a birthday party who cheered for her after she overcame her fear and rode a pony, and her friend from preschool who wore sunglasses to school last week when it was raining outside. The friend’s mother explained, “She wanted to be like Penny.” And I think about the woman who works at a restaurant and who has become my friend because she loves Penny. Her sister, in Morocco, has Down syndrome too.
I used to be afraid of Penny’s limitations, but having her in my life has instead expanded my sense of possibility. For all my successes, I had been unable to see a whole swath of humanity, people who were different from me by virtue of education, or ability, or wealth, or culture. I had been unable to see them, and so I had been unable to know them, to recognize myself in them. I had been unable to give anything of myself to them, and I had been unable to receive from them the gifts they have to offer.
Penny didn’t walk until she was 22 months old. She used sign language instead of spoken words for a long time, too. She still gets speech, occupational, and physical therapy every week. And yet, what I have come to understand is that mine was the limited life. Hers — and now ours — is a life of increasing fullness and wholeness, a life built upon relationships of giving and receiving rather then accomplishments and status symbols.On that spring day four years ago, I realized that my life was a gift, not a reward. And I realized then that I had been given yet another gift, the gift of a daughter with Down syndrome.