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Hope for a Happy Life
Dr. Gallin knew the best person to help Dylan: Michael Kazim, MD, a cutting-edge ophthalmologist specializing in complications of the eyelids, who would prepare his sockets for artificial eyes and make sure Dylan’s head grew to the right size and shape. Dr. Gallin ordered a battery of tests to rule out further issues with his heart and kidneys (all eventually came back negative for other defects). More important, she told Karen what she most needed to hear: “You have a beautiful child who will go to college and get married and live a productive, happy life.”Three weeks later, with Dylan under general anesthesia at Morgan Stanley Children’s Hospital of New York-Presbyterian, Dr. Kazim inserted small M&M-size pillows called hydrogels into each of Dylan’s eye sockets and stitched the lids shut. These fillers mimic the presence of eye tissue so the face forms the way it should. Dr. Kazim replaced them with larger hydrogels a month and a half later.
When the doctor unstitched the eyes and removed the second pair of fillers, after another six weeks, he and Dr. Gallin felt that Dylan’s facial measurements had reached normal proportions. But the now-five-month-old Dylan seldom opened his lids, except for an occasional flutter when Danielle handed him his favorite toy, an orange Koosh ball, or when he got a lick from Niblet, the family’s cairn terrier. Most people thought he looked like he was sleeping even when he was awake. So the next step was to visit an ocularist and start the process of making the blond boy beautiful blue artificial eyes that could increase in size as he grew.
As Dylan neared his six-month birthday, Karen sat at her kitchen table with a box of doughnuts, several cups of coffee and two state therapists. She was concerned. Dylan’s twin, Jenna, seemed to be way ahead of her brother developmentally. She was already crawling, while Dylan just sat up and rocked back and forth, a typical self-stimulation technique. Krista Petersson, a social worker and physical therapist at St. Joseph’s School for the Blind, reassured Karen that it’s normal for many blind children to be behind sighted kids on such milestones, since much of what a child learns at this age comes from visual cues. The therapists were more concerned about Karen. Managing four kids under four, one of them disabled, plus a part-time job at an insurance agency, was a lot for even a supermom to handle. But Karen says she’s not ready for a support group yet. Like Dylan, she needs to take one small step at a time.
On a mild day in February, 20-month-old Dylan takes the hand of his therapist, Mi Koo, and walks to a small table in a narrow office at the Jewish Guild for the Blind in Manhattan. Mi Koo hands him a brown coffee tin with colored wooden blocks and plastic shapes. Dylan, his head bent slightly and eyelids still closed, takes out two shapes and bangs them together. He isn’t wearing his artificial eyes today. As soon as Karen puts them in, he takes his finger and pops them out in one quick motion.
He’s also annoyed by the new green-and-blue wool sweater he’s wearing, a gift from his grandmother, and he keeps reaching to scratch his neck. Losing interest in the blocks, he finds the can, drops the blocks in and pushes it away.
“That’s good, Dylan, but don’t push away. When you want to say finish, do this,” says Mi Koo, taking the palm of his right hand and rubbing it over the top of his left, then the left palm over the right, to remind him of the proper sign. Dylan’s newest challenge is learning to talk, another milestone that can take longer for blind children. In the meantime, he’s learning sign language to communicate. He’s become so frustrated at not being able to express himself that he’s started banging his head on the floor.
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