Family Matters - Page 2

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. Contact: eliz888@comcast.net. Tell us what you think about this article by e-mail at letters@psychnetworker.org, or at www.psychotherapynetworker.org. Log in and you'll find the comment section on every page of the online Magazine section.

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