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By Elizabeth Flynn Campbell
Listening to Your Heart
Sometimes when my younger son, Jesse, does something that exceeds my expectations—like the other day, when he was the first to notice that our dog, Cody, wasn't feeling well—I'll say to my husband, "Wow. Maybe he doesn't have Down syndrome after all." This is our inside joke, of course, since Jesse's Down syndrome, which he—and we—have lived with for 12 years, isn't going anywhere. He has an extra 21st chromosome in every cell of his body, and always will.
I suppose you could say that we "chose" Jesse, despite the amnio results confirming his Down syndrome, because we decided to gamble—on our belief that having a good life isn't necessarily the same as having an easy, typical life. And yet, for at least the first year after he was born, my belief that we could have a good life with a disabled child was a frail and wavering thing.
A few weeks after Jesse's birth, I ran into my neighbor Susan at the town library. We'd first met about a year earlier at the local playground, where my then-1-year-old son, Ian, toddled alongside her 1-year-old son. The last time I'd seen her was at the obstetrician's office. She, like me, was pregnant with her second child, and we'd joked nervously about what it would be like to have two children under 2 years old. So now, in the children's section of the library, I held my newborn in my arms and asked about her new baby, who would have been born within weeks of Jesse. At first, she said she'd had a miscarriage. Then, in a halting, awkward way, she clarified what really had happened—she'd had an abortion when she received the news that her baby would have Down syndrome. Before I had a chance to take in what she'd just told me, I blurted, "Oh, Jesse has Down syndrome too!" In the wake of the silent nuclear collision our words created, we both stumbled out of the conversation and went our separate ways.
In the flight to my car in the parking lot, I was running from the specter of the life that could have been mine if I'd declined Jesse and all that comes with a prenatal disability diagnosis. My reaction was deeper and more visceral than judgment. It wasn't about abortion per se. It was about being face-to-face with someone who'd come to the same life-shaping fork in the road as I had, and had chosen the path that diverged from mine.
At the time, Susan was a potent threat to my fragile self as the nascent mother of a disabled child, and my flight from her was fueled both by anxiety about my future with Jesse and jealousy of her disability-free life. I have no doubt that she and I felt similarly anguished in that moment when we both learned that the child we envisioned wasn't to be; but, somehow, I couldn't dismiss my hope that a Down syndrome diagnosis didn't tell the entire story of who my child might turn out to be.
I've often wondered about the implications of our different choices. Most love affairs that begin in pregnancy are kindled by fantasies about the baby's potential: the Rhodes Scholar, the successful entrepreneur, the Olympic athlete. Little is known, so the sky can be the limit. But the love affair that begins with a child like Jesse, whose only known characteristic at the start is imperfection, has the quality of a relationship that surprises and delights over time because the expectations going in are so low and so vague.
My first knowledge of Jesse was of his genetic disorder—some version of every parent's worst nightmare. We'd been dealt what first looked like a lousy hand of cards. The hope we clung to was that, sometimes, great gifts come cloaked in disappointment. Susan and her husband, like the vast majority of parents who receive a prenatal Down syndrome diagnosis, had held out for a better hand. I wondered whether she got one.
I was relieved when I heard she'd moved to a nearby town soon after our library encounter, and I even wondered if it was because of us. Had we stayed neighbors, it would have been intensely uncomfortable—her watching me raise the kind of child she declined, and me watching her have the kind of nondisabled family I'd longed for.
A few months after running into Susan in the library, when Jesse was still an intimidating prospect for me, I had another strange encounter—this one an epiphany. It was delivered to me under the most mundane of circumstances, in a noisy, crowded shopping mall. My husband had walked off with Ian, who was busily playing with trains in the toy store. It happened to be the first time I'd placed Jesse face-forward in the navy blue Baby Bjorn I wore strapped over my shoulders, and I strolled idly, waiting for the trains to lose their allure for my son and husband.