“I’m honored to share my family’s experience with hearing loss. I am the mother of twins, David and Elyssa, who were born extremely early. One of the consequences of their prematurity is that both my children have permanent hearing loss.
“Emotionally, it was like being knocked back to right after their birth at 24 weeks. It was just so unfair! They had already been through so much! And this was entirely different than anything they had been through up to this point—this was permanent, not something that they would eventually outgrow.
“And while hearing loss is actually a disability I am familiar with, since my Dad is hard of hearing, I still could literally feel the track of my life shift beneath me after hearing that news. I knew in that moment that wherever I thought my life was going before, I was now headed someplace entirely different.
“We learned about the all-important ‘speech-language acquisition window’ and began to research cochlear implants. At the same time, I also began to learn sign language. Our goal was to give our children access to language in as many forms as possible. As much as possible, we wanted to put off forcing them into any path that would narrow their options. Don’t misunderstand, I do want my children to be able to hear and speak so that they are not isolated from the larger culture we live in. I also felt though, that it was not entirely up to me… our children should have input into the decision of how they would communicate, too.
“As our preemies continued to grow and develop, we started to notice that they were hearing more than their tests would have predicted. The hearing tests showed that David’s hearing had improved—in some ranges to a moderate hearing loss level—A miracle! Elyssa however, still tested as profoundly deaf.
“The time had finally come to get Elyssa a cochlear implant. It wasn’t easy to go through for any of us but we are so glad that we did! Elyssa has done fabulous with her “cochlear elephant” as she called it at first, quickly catching up to where she was with her hearing aids and then surpassing that point. She had a hearing test at one year post-activation. I cannot describe the feeling of joy and pride I felt, sitting behind my “deaf” daughter, watching her respond to sounds I could barely hear. For David, hearing loss is not his major issue anymore, although it is still there. We certainly are in a different place than I expected six years ago, but it is also most definitely a good place.”
If you would like to share your personal story, please contact us at Contact CDC-INFO