Franky was born into a world of silence. Stark, empty silence. He couldn’t hear our clamoring voices as we held him for the first time. He couldn’t hear the piano notes that drummed endlessly under the fingers of six older siblings. He couldn’t even hear his own cry.
Franky’s only access to the world of sound for the first three years came as he pressed his head up against walls and furniture and people. His only connection to our noisy world was through the pulses he felt a as he pressed his forehead against the piano or the floor in an attempt to feel sounds and voices.
At first, Franky’s deafness went unnoticed. Adopted as an infant, Franky was diagnosed with a number of issues that never manifested themselves. But at the age of one, Franky didn’t make normal noises. He didn’t try to mimic his older brothers’ words. He didn’t try to call for his mom. The only sound he could make was a piercing scream.
His inability to hear took a toll on other areas as well. At one year of age, Franky could barely crawl. He didn’t learn to walk until he was two. He was extremely shy around strangers and terrified in crowded situations. As the first suspicions began to dawn upon Mom, an ENT told her that Franky probably simply had fluid in his ears.
Surgically inserting tubes into the ears of young children is a fairly common procedure that is frequently used to solve hearing-deficiencies. But Franky had tubes put in his ears twice and even wore hearing aids for a time.
Nothing worked. At three years old, Franky still could only make the simplest gurgling noises. Words like “Mama!’ and “Dad!” were huge milestones. And there was no solution in sight.
So Franky went to a specialist. At three years old, Franky was diagnosed with profound deafness. For three years, he had been unable to hear the sounds around him. Hearing is measured in decibels. Franky could only hear sounds above 135 decibels. Sounds like jet engines and gunshots were the only sounds accessible to him.
A choice had to be made. We could help Franky succeed in the deaf community, using American Sign Language to communicate with those around him. Or we could give him access to the world of sound through a cochlear implant and slowly teach him to speak English. Both paths require tremendous work. Both have passionate advocates.
We felt that, as a deaf user of ASL, Franky would only ever be able to communicate with others who used ASL. Studies show that ASL users, on average, only learn to read at a 4th-grade level, since ASL and English are entirely different languages.
ASL users also find it difficult to mainstream themselves. If Franky was given access to the world of sound, though, he could learn to speak and understand English. He would have the ability to communicate with everyone around him, unhindered by language barriers.
Ultimately, we chose for Franky to be a part of our world, a world of hearing and sound and speech. And so, after months of testing, at four years of age, Franky underwent surgery at the University of Michigan. A tiny wire was implanted into the cochlea of his right ear.
The wire communicated with a device that Franky wore on his head. Theoretically, Franky now had total access to the world of sound. He could hear a pencil scratching across paper, the sound of a bus down the street, and the sound of Mom’s voice.
But the journey was far from over.
Franky’s Story, Part I is the first part in a series of blog posts detailing our family’s journey through deafness. Part II will be published on Wednesday, May 6.
Tags: cochlear implant