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.
As I walked, I wondered whether the other shoppers and their nondisabled children could tell that Jesse had Down syndrome. It was taking a while for the knowledge to sink in that I’d always have a child who wore his disability on his sleeve, so to speak. Anxious with these ruminations, I stopped and mindlessly looked at a large directory of the stores in the mall. As Jesse and I stood there, a tall, thin man sidled up next to us and said simply, “Everything you need is here.”
I replied with something inane like, “It sure is,” a little self-conscious and not really looking for small talk. Then I fell silent. A second later, his words came back to me like a mountain echo—their meaning burst into my consciousness like a game-show contestant’s realization that she knows the winning answer. I turned quickly to get a better look at him, but he was nowhere to be found. I began to feel that I’d just had a profound encounter with someone whose message I needed to know. Everything you need is here. As if reading my mind, his words seemed to be telling me that no matter how Jesse’s disability would change our life, we—my family—would have what was needed. Nothing less, nothing more.
In the wake of this mysterious encounter, I felt more confident that Jesse’s life wouldn’t be a tragic burden I’d have to try to bear valiantly. Strangers could think whatever they thought when they noticed he had Down syndrome. What mattered was that my family was sufficient the way it was.
These words have stayed with me through the years, like a mantra. This conviction has become a kind of lifeboat I swim back to whenever I feel worn down by the many ways the world reflects back to me that Jesse is inadequate. This reflection of him as “less than” almost always catches me off guard, because, despite the things he can’t do, despite how hard it is sometimes, despite the loneliness of having a child who looks so “other,” I experience his being as completely sufficient. The things he can’t do pale in the context of who he is. Falling in love with a child so different from the one I’d hoped for has enlarged my heart in ways that prenatal tests aren’t designed to predict, or even acknowledge.
It’s a cliche to describe a child with special needs as a gift, but that’s the word that many of our friends, seasoned parents of such children, often use. If I hear this kind of thing on a particularly hard day, perhaps when Jesse has been wildly stubborn or on a day when I’m feeling guilty about not doing more on his behalf, I might think rather cynically to myself, “some gift.”
But even then, I know what they mean. Jesse, and everything he is, is a gift, albeit a complex one, because my love for him confounds all my narcissistic longings. I may not be proclaiming his honor-roll status on the back of my car, but Jesse has captured my heart in ways I couldn’t have imagined at the time of his diagnosis. He’s a gift in the sense that I never would have thought to pick him out for myself. I had to receive him in fear and trembling, until something in him brought out something in me that was utterly dependent on his existence and that could revel in his individuality.
Not long ago, Jesse motioned that he wanted to whisper something in my ear. I leaned over to him and he whispered, incongruously, “Listen to your heart.” I replied, astonished, “Jess, did you just tell me to listen to my heart?” He nodded yes, with a big smile on his face. Was he some kind of oracle, telling me the secret of my life? My husband, less prone to mystical interpretations than I, suggested that he probably heard this on one of his beloved Disney movies and was simply repeating it. So what? Listen to your heart. The truth is that I’m more aware of my heart because of him. It started with his diagnosis, which broke it. But now, these many years later, it’s larger than it would have been without him. That’s the part that everybody calls a gift.
I couldn’t have articulated this at the time Jesse was diagnosed, but I think now that our ordeals are often like wisdom knocking on our door, and when we turn away from them, we do so at the risk of our own impoverishment. I’ve learned through Jesse that the kind of love that really matters has nothing to do with being perfect. I doubt I’d ever have comprehended this liberating truth fully if I’d declined to get to know him.
Elizabeth Flynn Campbell, a licensed psychoanalyst in private practice in Shelburne, Vermont, is writing a book about the enlightening journey of raising an imperfect child.