Off the Beaten Path: The Piano

Avery loves the piano. He sits tucked in the cup of my lap, where he becomes very quiet and takes quick, panting breaths in happy anticipation. I open the music book to the only two songs I know: "As Time Goes By" and "Someone To Watch Over Me." When I was pregnant with Avery and his twin brother, I'd play the songs over and over, end to end, so that it seemed as if I had a full repertoire.

The piano is a simple upright made of old, dark wood. Some of the keys stick and it's missing one of the knobs that pulls the cover shut. It's a gift from my friend Phyllis, who plays beautifully. She knew of my secret wish to learn and when she saw the piano at a garage sale, nearly abandoned, its keys stripped of their ivories, she thought of me. She brought it home and cleaned the wood, repaired the broken strings, glued on new ivory. She worked until, for the first time in years, the piano could be played. It was a surprise birthday gift. She gave me a song. A song, and a piano to play it upon. "It has a lovely tone," she said. "You never would have guessed, looking at it."

As I play now, Avery balanced on my lap, I think about his left ear. When he was first born, we were told many things. We were told he needed to be checked for a heart defect (which he did not have) and for gastrointestinal problems (again, nothing). We were told he would grow slowly, and would most likely have respiratory issues (also, no). And we were told he was deaf in his left ear.

At the time, the news struck me as inconsequential, compared to what seemed to be the larger fact of his life—Down syndrome. Phyllis said, "He's got two ears, right? And the other one works just fine." But I had darker thoughts. I remembered thinking, at least it's not Bennett, Avery's twin. I didn't know if I could handle two babies with special needs (I wasn't sure if I could handle even one baby with special needs). Let Avery take it all, I thought. Let him have all the trouble. I think part of me was angry at him for being born different than I had expected.

I wasn't sure I could be Avery's mother, and I wasn't sure how to talk about that fear. So I read, and tried to learn as much as I could about Down syndrome. What I found didn't put my mind at ease—in fact, it made me more certain than ever that I wasn't qualified to raise such a child.

In particular, there was a brochure from the National Down Syndrome Society titled, "Myths and Truths." I took it as a sort of pretest, which I failed. I believed all the myths. Down syndrome is not a rare genetic disorder, but a common one. People with Down syndrome are not always happy (they have a full range of feelings, like everyone else). People with Down syndrome are not severely retarded, but fall into the mild to moderate range. Down syndrome is not fatal, and 80% of adults with Down syndrome live to age 55 or beyond.

I kept reading. I learned that during normal cell development, a single cell begins to grow by dividing and duplicating itself over and over. Sometimes, for reasons that are not yet known, the original cell does not divide equally. It continues to grow and duplicate itself, and its error. When the extra genetic material is located at the twenty-first chromosome, it is called Trisomy-21, which is also known as Down syndrome.

Although babies with Down syndrome have extra genetic material at the number 21 chromosome, all of their other chromosomes are normal. In fact, the material in the number 21 chromosome is normal, too—there is just more of it. And I learned that there is great diversity regarding intelligence, learning styles, physical ability, creativity and personality, because of the influence of the other forty-six chromosomes in each baby's genetic blueprint, a chain of DNA that when linked end to end, would reach to the moon.

We scheduled an appointment to have Avery's hearing retested when he was three months old. The test was inconclusive. We went again when he was nine months old. This time, he passed. The audiologist said, "This is the most beautiful tympanogram I've ever seen. I wish all children had such clear ear canals."

Sometimes when I play the piano—Avery sitting on my lap, the solid, undeniable weight of him—I look down at his left ear, and wonder about the failed hearing test. I have all sorts of theories: there was fluid in it from the C-section. Or, the machine malfunctioned. It was simply a bad test. Or, his ear canals were too small. He just needed time to grow.

I needed time to grow, too. I needed time to forget the son I imagined I was having, and allow this new son to show me who he is. At three years old, Avery is a boy who loves music. He loves animals. He loves to read. He will eat oatmeal until his little round Buddha belly looks likely to pop; or yogurt; or apples; or peas. He will pick the meat out of a sandwich and eat it, but discard the bread; he dislikes potatoes. He has a weak spot for spoonfuls of raspberry jam straight from the jar.

I have learned, too, that Down syndrome is a part of Avery, but not the most interesting part. There is more to him than meets the eye; a whole person you might never have guessed at, just looking at him. If I can learn that, maybe others can, too. These are my hopes. I think about them as I play, Avery bouncing his legs and clapping his hands to the sound from the piano, the only child of mine who can keep a beat. Soon Avery is plinking the keys too, and I am forced to abandon my usual repertoire and go off the page. We play together, he and me, a boy and his mama, making music from the heart.

column added on 2006-12-10 :: ::

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Jennifer Graf Groneberg

Jennifer Graf Groneberg lives and writes at the end of a twisty gravel road with her husband of fifteen years and their three sons. She maintains jennifergrafgroneberg.com, writes the blog Pinwheels, and a blog on ParentDish.

Jennifer's book Road Map to Holland about mothering her middle son Avery, a fraternal twin born with Down syndrome is due out April 2008, and is available for pre-order now.

Read more of Jennifer's Off the Beaten Path column.

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