The Assembler of Parts: A Novel (4 page)

Both my parents had known this before we had left the hospital—Garraway had said as much to Mother after he examined me. But the news coming from this surgeon’s mouth—that there was little hope of bringing sound into my brain to prompt the development of intelligible speech—seemed somehow harsher, more final, than the geneticist’s earlier remarks. Father looked to Mother and put his hand on her shoulder. Mother’s heart raced against my head, and I could no longer feel the separation of her staccato beats. Her heart moved like a fast-running river, waveless and solid, pouring itself out into some unmoved delta. She bobbed my head, though, with her sighs.

There was quiet in the room after O’Neil finished. It went on for a minute. Finally, Vincent Garraway turned his head to ask his ENT colleague, “What about the rest of the upper airway? Any problems with that?” It was a question to which he already knew the answer. He asked it out of kindness, in the way of many of his questions. Though the question was important because one of the dangerous conditions associated with Hilgar syndrome is a malformation of the upper airway—the larynx and the trachea. Narrowing can be life-threatening and in need of aggressive reconstructive surgery.

“Oh, thank you for reminding me, Vinny. It’s fully clear, the upper airway. The trachea is in the normal range but on the small side. But it shouldn’t pose a problem and probably will grow relatively larger over time. So that’s good news—her defect is limited to the auditory apparatus only. Her CAT scans are good, perfect really.”

As if the word “perfect” were a gong or the report of the starter’s pistol, Vincent Garraway began to roll his eyes again, but now with a cyclonic fury. Round and round they went in his narrow sockets, quickly round and round. I was so excited my legs stiffened like bands of taut rubber before releasing themselves in a dyskinetic barrage of kicks that practically dislodged me from Mother’s lap. “AAAAGHNNNN!” I proclaimed through the self-jostling. “AAAAGHNNNN!” Garraway gave me his crooked, coy smile.

Father asked about the process of learning sign language. Mother wanted to know if she could use Q-tips to clean my ear canals until the surgery. Even now* as I watch the tape’s images flash by, I can’t follow O’Neil’s answers very well since Garraway wouldn’t stop making faces at me. Even now* my legs twitch and tighten and twitch again. When finally his turn came to discuss my case, my legs were aching and limp from a baby marathon.

I would be smart, very, very smart, he said. “Already, Jess is doing things—motor and cognitive skills, the use of muscle and brain—at least four to eight weeks ahead of schedule. It’s like she was born with the developmental level of a two-month-old.”

“AAAAGHNNNN,” I replied, trying to make his eyes roll again. But I think he was tired, too. Mother felt not fatigue, but relief, just then. The pressured clasp of her hands relented. But when Eileen Marshall began in on my holey heart, once more I could feel on my skull the discrete tap-tap-tap from within her breast.

They were to watch for signs of heart failure, my parents were. Hard breathing, fatigue with feeds, soaking sweats. Other than that, there was no problem with my cardiovascular system. The Assembler had hooked up everything quite properly.

Properly, perfect, smart, the residues of my day.

On the way home I sat in my infant car seat under a borrowed hospital blanket, quiet except for an occasional couplet of hiccups, and watched the sun compete with long winter shadow. Mother laughed as we drove, amused by the startled look that took my face with each surprise attack. My scratchy sack had been stuffed into the baby carryall, never to be seen again. The hiccups passed in a while, and the light and shadow flecked my eyes hypnotically. I sat most of the trip in a trance, content to breathe the splashing light. In a near whisper, Mother said, “I think we will be real glad to have the doctors we have for Jess. They all seem to know what they’re doing. Especially Dr. Garraway. He has such a nice way with Jess. It’s like he already knows her as a person.” Father nodded and drove. “Dr. Burke is nice, too. I think they’ll make quite a pair of doctors for her.” She swiveled to face me. “You like that nice Dr. Burke, Jessy baby? He your favorite, little girl? Hmm?”

Father drove on, letting his eyes occasionally glance into the mirror to see us. He started to say something twice, but each time his lips moved a little and stopped. Mother began to hum. The song reached him in the front seat, and “Mary Had a Little Lamb” began to saw into his brain. He wanted to tell her to stop, that I couldn’t hear any of her notes now, or her words when she pushed her face into mine and spoke. He wanted to tell her to stop because he couldn’t stand to see her treat me as if I could. He wanted to tell her to stop because she was wasting her breath. He wanted to tell her to stop and to listen to him, how
uncertain
he felt about it all—the missing parts, the future surgery, the need to learn sign language, a family burdened with a defective baby. And not just uncertain. Scared. Scared and angry both. And often more angry than scared. And that his anger spun around from place to place like the finger of Final Judgment, sometimes pointing to God and fate for making his baby so goddamned imperfect, and sometimes to himself for being so goddamned imperfect that he couldn’t accept her life, and sometimes to Mother, simply for bearing the thumbless, deaf mutant child. And when this last thought blackly coalesced in his brain, he returned to being angry at himself for his own failings, the greatest of which was to blame the woman he loved for the baby they made. He wanted to tell her all this, but the tranquility in her song stung his reeling heart into silence. Let her be, he said to himself. Let her be.

Finally, he remembered what the geneticist had told them, twice now. He asked, “Do you think Garraway really knows how to predict if a baby with a genetic syndrome is smart? I mean, was he just saying that to cheer us up or did he sense something in Jess that’s special?” He turned his head partway to look at us directly. His gaze lasted only a second, but I could see by the arch of his eyebrows the earnestness with which he wanted an answer. It was the one good thing about me that he could hold on to. He was wearing his ski cap in the car, the red one with white reindeer on the sides, and the movement of his forehead seemed to rattle their antlers a little. I felt Mother’s hand caress my head through my cap.

“I think doctors have an ethical duty to tell the truth. I believe he meant what he said,” she replied, nodding. Then she strained against her shoulder harness so her face was right in front of mine. “You a smart little girl, my angel Jess? Are you, baby?” and she ruffled my cheek with the back of a finger. “You have a little head full of thoughts, child of mine?” My hands and feet were wrapped so tight, I couldn’t move them at all. So instead, I fixed her eyes with mine and watched the pulsing of the light coming onto her face. She was so beautiful, in light and in shadow, so beautiful. Father drove on, silent and sad, in sun and shade, trying to hold on to Garraway’s augury. I see his thumbed hands gripping the wheel knuckle-white tight as Mother hummed.

As a week-old newborn I had few waking hours, but those that managed to bob on the calm dark surface of sleep were fully pleasurable. Awake all at once, as if from a dry rebirth, I came out of the depths of sleep to engage the world with my senses. Much of the world was my own humming machinery and much of that was my mouth. At first, it explored itself like a captive animal in its pen. My tongue liked to count the papery ridges of the hard palate’s plateau, and to glide over the floor of the mouth to feel its tether, the sharply lined frenulum, and to milk a little saliva from the glands that hid on its either side, and to search for the miracle of erupting teeth in the newly emptied pits along my gumline. It found the frenulum attaching my upper lip to the dental arch one day and worried it sore between two feeds. It licked my lips like a friendly dog, and I am sure would have slathered my cheeks, chin, and nose in happy slobber if only it could have reached. What it could reach now was the frequent offering of my mother’s breasts, and it grew to know the shallow corrugations of each nipple and every soft subcutaneous tubercle in both dark areolae, bumps to slow my sucking progress. Speed bumps.

And the day came when it made the acquaintance of my fingers. It was not a planned visit of digit and mouth. No, it was all chance that brought my right hand to my face where it groped my nose and found a lip to pull and from the lip a cavity to enter and within the cavity a happy, hungry dog of a tongue to play with. Other fingers followed until all four were red and boggy from the licking and sucking. It was my general sense that day that a thumb could never have been accommodated in that small and busy place. So there, all the better.

If my mouth had the character of an animal, my skin was pure heavenly soul, intent on softness, lightness, tickles, and caresses, and indeed as I lay on the changing table to receive dry diapers and a dusting of talc, my skin was my organ of conveyance to the future respite of heaven where all is skin lighted from within, a soft warm lamp of skin aglow with quiet peace. My skin was just like that back then*, and never more prickled with joy than when in the yellow plastic tub, lapped by water warm as the liquor I knew before birth, but water I could set now in motion to catch the light. I splashed to make lenses of the waves, to focus the light on my submerged integument, on the ceiling of the bathroom, against the vanity mirror whose height from ground level would never, in all my life, permit me a view of myself unless I stood tiptoed on the toilet seat or bathtub rim. I threw wet light at that mirror even as bright streaks shot down my body and returned in the water’s recoil from the bath basin’s walls. Light, then*, was my plaything. Now*, it is me.

*

I wonder about thumbs. They are, after all, what most makes us human. Had the Assembler screwed mine in place, would I have been ennobled in some way? Made more human? Everyone agrees, to err is human. So perhaps those stumpy digits would have offended, would have perfected hands that might have strangled the spirit. So I wonder, as I see myself playing with light, did He make me a little imperfect to preserve me from some greater imperfection? Did He number my bones to improve my soul? Yes, as I watch my life, I think I begin to see. More tapes arrive. I watch, the past*, the present*, the here*, the there*, all blending like the parts of light to a single bright whiteness. I feel so clean.

The few wakeful hours of those first weeks rarely involved Father. In the evenings, yes, home from work he held me against his shirt and let me breathe his breath as he looked down on me with whiskered face and eyes as soft as water. He cooed and smiled and called me “Jessy Baby” and held me stiffly in his basket arms. There was a spot on his chin near the center cleft where his beard refused to grow. When I was four months old, I finally got my hands to it. Even though his beard was not too bushy, when my index finger slipped down that hole, it was like exploring the nest of some exotic bird. He circled his head a little so my finger was brushed by his beard. I shrieked and he laughed. “Jessy Baby’s big adventure,” he said loudly so Mother could hear.

He shaved the beard after Jeanine was born. My nest was gone, but not the bald patch of skin on his chin, which looked just like a thumbprint, ridged and wavy, lined and unique. I could touch it with the side of my hand and pretend, whenever I wanted.

But I knew he was pretending, was in fact the first to pretend. In those new evenings home from work, he took me up and held me while Mother prepared their supper. He had the words and the gestures, the smiles and arched eyebrows of the committed loving father. But in the gloaming’s weak, lingering light, February’s timid affront to winter, there was a hollowness to the words that formed from his lips. They came into my eyes, they melted in my mouth, like the false fluff of cotton candy—so much that was all so little, sweetness that was no more than stale air. What gave them away—gave him away—was the force of the words. They were overblown, shouted, not spoken. I could feel the word-rumble in his chest as he called out. The vibrations were thick and gluey through his sweater. Even before the word was born—“Jess!”—I could feel the empty center of it against my cheek. “Jess!” again he’d yell so Mother could hear. “My baby Jess!” Words like bubbles from the inner machinery of a man, a father, not yet sure of his love of a child with missing parts. My father, the first to pretend, the third to be tugged back with time, third after Dr. O’Brien and Cassidy, the man with the guitar. I pulled extra hard on Father’s sleeve, his sweater, nose, beard, and lip. Time and again I pulled and would not give up. For the man had wanted, first with his bitten silence and later with his loud and shouted words, nothing more than to protect my mother’s heart. “Baby Jess’s Big Adventure!” he boomed with my finger in his beard as he held me in the doorway to the kitchen where my mother stood frying onions, smiling.

I grew used to the pretenders and their trussed words. I tried to tug them all back, and most I did.

My father worked in the post office, a mile from our house. He weighed parcels and envelopes, sold stamps, sealed boxes, doled out packages. He held the records for daily stamp sales and heaviest single item shipped, a barbell set going from Rockville, Maryland, to Nome, Alaska, for Christmas. Three men carried it in to the post office, a single box weighing three hundred twenty-five pounds. Father stayed late that night to help load it onto a truck. He routinely apologized to people who had to wait in line even briefly, and he watched the street for the parking police through the large window opposite his counter, announcing their presence with a low, loud, “Whoa! Who needs dimes? Dimes for sale. Cheaper than a stamp!” He never charged for dimes. His third record—most free dimes, nineteen, unbroken to this day*.

His friend Joe Cassidy worked a slot at the counter with Father. He accepted two cigars and returned as many back-claps when Father returned to work after my birth. “Show me a picture of this Jessy Jackson,” he teased. “This, I gotta see!” Father showed him the one he took the morning we went home. The unlighted White Owl had just been clamped by Cassidy’s yellow teeth when he saw the thumbless baby surrounded by the thorned roses. He bit through the thick end and the cigar dropped to the counter. “Beautiful,” he said with a thumb-sized chunk of tobacco unspooling on his tongue. “Really pretty.”