From the Author of Every Least Sparrow Carolyn Walker, What Happens when a Younger Sibling Tries to Understand his Disabled Sister?
By Carolyn Walker| Published on carolynhwalker.com | 2017 | Carolyn Walker is the author of Every Least Sparrow (Garn Press) ON SALE on Amazon ($14.35) | A version of this blog post first appeared on Monday Coffee and Other Stories of Mothering Children with Special Needs | Syndication made possible through Patreon.
What Happens when a Younger Sibling Tries to Understand his Disabled Sister?
My son creeps into his sister Jennifer’s bedroom and leaves the door ajar. I can see, through the slit, that he sits on her blue carpeting, torso curved forward, eyes concentrating. The curiosity that is Jennifer’s leg brace stretches on the floor before him. He’s working to fit his knobby little leg into it. In his shy way, in the absence of questions and answers, he seeks knowledge about this contraption, and about his older sister — mentally retarded, physically deformed, a girl with a Rubinstein-Taybi face: down-sloped eyes, beak nose, lip pits.
At three, Christian is not afraid of the brace’s implications: its echoes of torture, its prison bars and leather straps. Nor is he afraid of Jennifer, like the chubby little boy who lives behind us — the chubby little boy who stops in a dead stare whenever he sees Jennifer, then runs for cover.
Previously, during a four-hour operation, a surgeon sliced a lazy S into Jennifer’s left leg, beginning at her hip and ending below her knee. He spread the flesh and probed inside, looking for missing parts. He rearranged muscle, tendon, and bone, and reconnected blood vessels, all in an effort to correct the deformities that claimed her ability to walk when she was five: a subluxed knee, dislocated quadriceps and patella, her tibia and fibula rotated out by ninety degrees, a flexion contracture.
I held Jennifer’s hand, tried to calm her, when the orthotist made the plaster model upon which he’d later build the brace: cloudy, lukewarm water in a bucket, plaster strips dipped then slathered in layers from hip to toe; the long minutes they spent hardening; the rap of the orthotist’s knuckle to ensure hardening had occurred; the electric saw she produced to cut the leg mold off. The orthotist began near Jennifer’s big toe, placed the saw onto the mold, pressed down and down and began a pushing motion intended to move the saw the length of her leg.
She had watched this menace approach, heard its high-pitched scream fill the room. What did she imagine with her 49 IQ? Flying skin and bone? Pain? A vacancy where her leg should be?
The orthotist was filled with compassion. She put the saw away, high on a shelf, and produced the cast shears, which made no threatening noise. They had short scissoring blades and long arms with thumb and finger loops. The orthotist had to angle and re-angle her approach. The plaster fibers were tough and resistant, but she mustered through. She cut and cut and cut, exposing the rubber tubing she’d placed inside to create a little space; then, farther in, on Jennifer’s tender white skin, the blue markings she’d made by way of measurement. She had drawn on Jennifer, as if she were human paper.
The brace is Jennifer’s exoskeleton; it’s scaffolding. Its bottom bars support the upper bars; its ascending flaps of leather help them secure a top edge that, in turn, supports Jennifer. In cooperation with the drop locks that thunk into place when she stands, the brace keeps that unfortunate leg straight, and Jennifer mobile. The steel plate inside the top edge was once covered with snowy leather, but it’s exposed now, rubbed bare from the friction Jennifer creates.
Jennifer, subconsciously, uses this very plate as a seat, resting her weight on it when she’s tired. Breaking down the muscle beneath her skin, it has created a groove in the low slope of her buttock. Sometimes she props her hand on the plate, like she would the back of a chair.
Christian looks anticipatory as he attempts to put the brace on, the way a boy might be the first time he considers climbing a tree, or plunging off a boulder into a pool of water. His fingers, eyes, and mind work in concert as he focuses on the brace, smudged dirty with Jennifer’s fingerprints and the occasional black scuff. The wheels turn as he thinks, How? How am I going to get my foot into that shoe, and at the same time close this strap across my thigh the way my sister does? The brace is nearly twice the length of his leg, and the shoe, a boring brown, is an artifact in the distance. The leather along its sides is as scraped and raw as flesh that has suffered a cement burn.
Christian pauses in contemplation, like a mathematician solving equations in his head. He works his leg inside the brace the way another child might work the tune from a birthday whistle. He holds it with his small hands, slides his foot up and down its length, searching for position. The closer his foot comes to the shoe, the harder the metal edging cuts into him, there, where his upper, inner thigh adjoins his body. He relaxes his leg down, in between the bars, flattens it all to the floor at the joint.
He has such beautiful, expressive fingers. An artist’s fingers. The very tips of them, with the thumbs, grasp the strap and its opposing buckle tenuously, as they might a butterfly’s wings, and they bring them together over his left knee. He sees the gradation of dot holes, where the single prong goes. But his fingers are too inexperienced. He can’t grapple the prong into a hole.
Finally, relenting to what he can’t achieve, it is with a remarkable ease that he brings his leg out of the brace. Tightening the muscles in his thigh, pointing his toes every bit as gracefully as a diver, he forms his body into a pike position and lifts. I step aside when Christian bursts through the door, and leaves that brace behind.
Every Least Sparrow (ON SALE on Amazon, 20% off, $14.35)
Author: Carolyn Walker
Book: Every Least Sparrow
Garn Press (226 pp.)
$27.95 hardcover, $14.35 paperback, $9.99 e-book. Ebook $2.99 through Kindle Matchbook Program
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