Our patients are the real heroes of Hearts for Hearing’s 20-year history. Our newest Patient Hero feature is double the fun and double the inspiration. Best friends Ava and Lilly, both long-time Hearts for Hearing patients, share a sound connection through their respective uses of hearing technology that enable their everyday teenager listening and talking friendship.
We joined Ava and Lilly at Roxy’s Ice Cream Social in Oklahoma City’s Plaza District a few months ago, and we were immediately captivated by their ability to laugh, have fun, share stories, and just be two typical teenage girls. Other customers in the ice cream shop had no way of knowing these two young ladies rely on hearing technology to help them communicate. Our Hearts for Hearing team members there watched proudly as they witnessed Ava and Lilly’s very typical teenage communication and interaction because that is our goal; teach babies and children born deaf or hard of hearing to listen and talk and be able to enter school listening and talking just like their typical hearing peers.
Ava was two when she was diagnosed with bilateral hearing loss, and Lilly was diagnosed with deafness following her newborn hearing screen. Both sets of parents were independently referred to Hearts for Hearing and their little girls received their technology, audiology, and listening and spoken language therapy services through Hearts for Hearing. It was a teacher at their preschool who first introduced them and pointed out that they had something special in common, they each wear hearing technology.
“We just instantly clicked,” says Ava, “because we immediately understood each other on a level our other friends just couldn’t understand.” Both girls attend different schools now, they are both driving, and they make time to still get together on occasion even though they have busy schedules. Both do well in classes, are leaders, and participate in lots of extracurricular activities.“I’ve never had that moment of ‘Why am I deaf?’”, says Lilly, “It’s always just been a normal thing.”
When the girls have time to get together now, they always pick up right where they left off; they finish each other’s sentences as they laugh and recall their times growing up together. They tell us it’s mostly laughing about the videos they used to make together or the art projects they worked on with each other when they were younger. They catch up on each other’s families, school friends, and what they’ve been doing.
In the summer they enjoy swimming with friends. Both told us they don’t wear their devices in the water, so it’s nice to have each other there because their other friends sometimes forget Ava and Lilly cannot hear without their technology. They can’t play games like Marco Polo. The two of them know they must tap each other to get the other’s attention in the water.
Both girls say when they are introduced to new friends, they often tell them something like, “Hey, I have hearing loss, just so you know. You may have to speak up,” and Ava adds, “but most people are pretty good about understanding.” Both girls say their longer-term friends sometimes forget about their hearing loss too … because, unless we’re not wearing our devices, we listen and talk just like all our friends.”
Ava and Lilly both believe in giving back too. They have been counselors at Hearts for Hearing’s annual summer camp for patients who are deaf or hard of hearing. “It’s really cool to see the younger kids … helping them … it’s so cool,” says Lilly. Ava quickly adds. “Yes, I agree, it’s cool to me that I can understand what the kids are going through.” Both agreed the kids at summer camp related well with them, maybe even looked up to them since Ava and Lilly are older now, but everyone recognized they all had something special in common. “It was” began Lilly, “pretty special”, said Ava. And they both looked at each other and laughed because they’re finishing each other’s sentences.
“We want parents of children with hearing loss to know it is going to be okay. Cochlear implants have changed my daughter’s life. She sings, dances, and talks nonstop.” -Heather Hunt, Lilly’s Mom
“It is through Hearts for Hearing that we found such hope in a time of such uncertainty.” – Sarah Devane – Ava’s Mom