GenesisFinding the Courage

When Elva was pregnant with Genesis, her water broke early, at just five months. She spent the next two months on bed rest in the hospital until she began having labor pains, at which point, her daughter was born prematurely. The hospital kept Genesis for observation in the NICU, administering all the typical tests and monitoring her progress. Every test result came back normal, including the results of her hearing test.

But when Genesis was a few months old, Elva noticed something unusual about her daughter. Elva left the living room where they were playing and Genesis began to cry. When Elva came back into the room, Genesis was facing the other direction and couldn’t see her mother. “Genesis, I’m over here! Genesis!” said Elva. But Genesis didn’t turn to face her mother. Elva clapped, made noises, and tried to get Genesis’s attention. Nothing worked. Genesis didn’t seem able to hear her mother.

“I went immediately to a doctor, and then another doctor for a second opinion,” said Elva. The doctors gave her the same diagnosis—severe to profound hearing loss—and recommended cochlear implants. “I cried. No, it couldn’t be true,” she said. Elva’s shock led to indecision about the right course of action for her child. On one hand, she wanted to wait for a miracle, to see if Genesis would suddenly be able to listen and speak on her own. On the other hand, she wondered if the miracle she was waiting for was actually getting her daughter a cochlear implant. It wasn’t an easy decision for Elva. In fact, she scheduled and canceled Genesis’s cochlear implant surgery three times.

By the time Genesis was nearly three years old, which is older than recommended for cochlear implantation, Elva was ready to go through with the surgery. At 4 a.m. on the day of the surgery, she roused Genesis from sleep and they made their way to the hospital as dawn broke. Elva said “goodbye” to Genesis as they wheeled her into the operating room, a sense of peace and calm, reassuring her. “When I did decide to do the surgery, and really go through with it, the sense of peace that came with that, and then hope, just made all the difference for us,” said Elva. Soon after, a nurse came into the waiting room to tell her that they had finished with Genesis’s first ear. Later, the surgery was complete. Elva brought her little girl a popsicle in the recovery room and at that moment, the family began their Listening and Spoken Language (LSL) journey.

For so many families on the LSL journey, the day a child’s cochlear implant is activated for the first time marks a turning point. For Elva, watching Genesis experience sound was profoundly moving. “She looked at me, opened her big, brown eyes, and when I saw the expression on her face, and knew that she heard sound,” said Elva, “I cried like a baby.”

After the initial joy of activation, Elva soon realized that teaching her daughter to listen and speak would take patience, perseverance, and a lot of teamwork. Because Genesis started her implant journey at three, it meant that Elva and Genesis would both need to work even harder to achieve the listening and speaking outcomes they wanted.

With Listening and Spoken Language, the parent is the child’s most important teacher. Typically, the parent and child attend weekly sessions with a Listening and Spoken Language Specialist and through special games and activities, the child learns to associate meaning to the sounds she hears. The specialists on Genesis’s support team encouraged Elva to narrate everything that they did together and to continue playing the games they learned in session throughout the week. “I needed to include her. She needed to know that I wanted to communicate with her,” said Elva. “I couldn't just let the teacher do it or the speech therapist or whoever else. I needed to let Genesis know that I'm interested in what she thinks.”

Today, Genesis is a thriving 11-year-old who loves spending time with her older sister, Indali, practicing gymnastics, and checking out books at the library. The tight-knit family of three enjoys piling into Indali’s king-sized bed and watching movies together, an activity Elva didn’t think would be possible when Genesis was first diagnosed. But with persistence and hope, Genesis is achieving more than Elva imagined she could. “There is hope. You have to focus on your family - your child. That's it. And celebrate. Celebrate your life and celebrate their life. And enjoy it. Enjoy the bad, because it comes with the good, it's both,” said Elva. “Speak about your story. There’s probably somebody out there who can benefit from it.”