Monday, November 11, 2013


One of the gifts that come with raising a child with Down syndrome is the element of surprise that arrives with it, like opening a box in which the contents drift out like helium-filled balloons. He surprised us on the day he came into the world—I had felt in my bones he was a boy, and though I had had an intuition of his unique genetic makeup somewhere in my seventh month, it had not yet risen to the surface of my awareness. Much later, once the shock had worn off and we had all settled into life in our small apartment on Leicester Street, I would occasionally recall month seven, in which I had had a dream about a baby boy lying on the rug, crying. In the dream I knelt on one side of the baby, a young woman knelt on the other, smiling. The woman was causing the baby distress somehow and I did nothing to stop her.  I had decided there wasn’t anything to the dream, dismissing it as typical of an anxious mother-to-be.  But I could not forget it.

One afternoon in Cliff’s infancy, as he began a physical therapy session with a visiting therapist, the dream came over me as déjà vu. It was all there, the details I hadn’t forgotten—the smiling therapist teaching me how to get Cliff to claim the muscles in his upper body, his crying in red-faced fury at the utter unfairness of it all. "Oh my God," I told her, "I dreamed this day months ago!" When I think back on it I can’t help but be amazed at the ways our minds work in tandem with the universe.  A second surprise.

This was all long ago, but through the years the surprises have continued. Some were welcome, like the day he finally took his first steps at the age of twenty-two and a half months, the December morning he spoke his lines on cue ("Ho,Ho,Ho!") in a third-grade production of  “Santa Claus is Coming to Town”; the way he sings at the top of his lungs when he's in the mood, with a vibrato flair on the final notes. Other surprises have been not as welcome. Despite a promising start, he was not able to learn to read or write, and he regressed in verbal expression, a heartbreaking development we still can't understand. 

Cliff had never been what one might call the “outdoorsy type,” often eschewing any suggestion of heading outside to play, so when my husband suggested a few years ago that we try taking him on a hike through the woods, I was dubious. I figured we’d get there, take a few steps on to the paths at Blue Hills, and turn around once Cliff tested out the unsteady surface of rocks and heaving tree roots.  What my husband and I experienced on that first hike was the obvious connection our son had to the wooded surround of tall trees, as if hearing the calming voice it held.  He had proved me wrong. Instead of protest, silence. Instead of retreat, a purposeful movement forward. Instead of fearful timidity, fearlessness.

The surprise comes each time we enter into the shadow of the trees, sunlight streaming in through the breaks. His self-talk, some of it loud and full of anxiety on the drive over, lessens as the natural surroundings enter his conscious mind. The hush is a blanket of silent snow, and our son’s resurgent energy appears. He switches the walking stick from left hand to right, the sound of birds above. The absence of his chatter makes it feel like a holy space, like church. Ken and I watch the transformation and sigh.

Nature's examples of regeneration and resilience are most alive in me when I feel the warmth of the sun, particularly in the colder months--Sun's ability to penetrate the car window as I drive around and Sun's gift of the warm spot on the floor where I step. I love that so much! I have to mention the sight of birds flying in formation in a boundless blue sky, the surprise of a bluebird or robin seeming to jump the brief distance in a close-knit copse of trees, one to the next. I am mesmerized, standing in awe when I see birds in flocks, uncountable and flying low in unison and up again, over and over in a great game of hide and seek among the high bushes. We are not so different, my son and I.
When we are not in the woods, busy going from car to store to home, sometimes I stop to point out what he doesn’t notice and we stand there watching clouds move, the wild turkeys walking in a fretful line across Elm Street, or breathing the scent of lilacs.
The balloons come with welcome regularity, drifting out of the open surprise box that is our life with Cliff.

This is an alpha-poem I came up with, in which a word is spelled vertically on the page and each successive line begins with the next letter down. (It is NOT an acrostic!) I chose the word RESURGENT.  It reminds me of our hikes in the woods.

Responding to the

Essence of what

Surrounds me

Until the bells

Ring and the

Ground swells beneath my feet

Ever lifting me up into

Namaste, I bow

To thee.