Big Heart, Small Package.

Photography by Kimarie Martin Photography

If you were to see Cassingham 4th grader Madison Lobedan crushing it at club soccer, Futsal, tennis, lacrosse, swimming, skiing, basketball (a travel boys’ team) or flipping around doing self-taught gymnastics, you might not notice what she’s up against.

“Life is nothing what we expected it to be, in fact it is so much more than we could have ever imagined or dreamed.”

Lauren Hanna

“My mom always said it was going to be hard for me and I have to try twice as hard as everyone else,” Madison said. “So I do.”

That’s because Madison has sensorial neural hearing loss and requires bilateral cochlear implants (CIs) that allow her access to sound through processors that convert sound into an electrode array that directly stimulates the auditory nerve.

“Finding out our baby girl had hearing loss was difficult and we both cried for a minute outside the doorway at Nationwide Children’s Hospital when Madison was just 30 days old as her audiologist delivered the news. It did not change the fact that we had a beautiful and healthy baby girl and she was going to have an amazing life whether she could hear or not,” Madison’s mom Lauren Hanna said.

As soon as they processed the news, they launched into action. Lauren, dad Derek and big brother Alexander met with other families of kids with hearing loss and started learning American Sign Language (ASL) so they could be a total communication family, meaning that they use spoken English and ASL together. Her younger twin sisters Avery and Hunter have also learned to sign.

“By six months old, Madison had lost all hearing after a series of ear infections. Over the next year, Derek and Lauren were denied pre-authorization for cochlear implants, a $500,000 surgery, while Madison endured a series of tests that showed she was a qualified candidate. “After fighting like hell, we won!” and Madison received her CIs in an eight and a half hour surgery.

“Being deaf doesn’t keep me from doing things like other people, I just do things differently.”

Madison Hanna

It was terrifying to have your infant daughter wheeled away on a hospital bed to have her head cut open, constantly wondering if you were making the right choice,” Lauren said. After the surgery, she had to wait three to six weeks for the surgical swelling to reduce and for incisions to heal before the cochlear implants could be activated, so the period of waiting and wondering is extended. Then, Madison had to start a process called mapping that adjusts and fine-tunes the sounds.

Though they give her access to sound, Lauren explains, “Madison cannot hear without her CI equipment. Madison does not shower or sleep with her CIs on. The CI equipment can also malfunction. At the end of the day, the cochlear implants allow her to hear, and the thousands of hours of speech therapy allow her to understand what is being said and help her have near perfect articulation; but she is still deaf.”

These countless hours of speech therapy and phenomenal teachers at the Ohio School for the Deaf and AG Bell, where Madison attended daycare and preschool, set her up for success as the first elementary school student in the Bexley City School District with bilateral cochlear implants. Formerly, most deaf Bexley students attended other schools with better accommodations and resources.

“The culture around Special Education in Bexley has not always been great. With the help of Sam McMasters (former student services director), Bexley Special Education PTO, several faculty members, and tons of communication on inclusiveness, the school culture has been changing in recent years,” Lauren says.

So far, accommodations like closed captioning, teachers using an FM microphone system that transmits sound to recievers in Madison's CIs, and reduced classroom noise (no fish tank, fan or music) have helped Madison focus and hear what’s going on in the classroom and become a stellar student.

Lauren explains, “There have been several families that have helped us get to where we are now with hearing loss, deafness, etc.” Locally, Meredith and Jay Crane and Sondra and Tom King have been an amazing source of support, though their kids were born decades apart. Lauren serves with them and others in the Deaf community on the Dorothy E. Ann Fund Board of Directors to approve educational grants to Central Ohio students and programs.

The family also finds support in the Deaf community through the annual Nationwide Children’s Hearing Loss Picnic, social media and Facebook groups for users of the Advanced Bionics CIs.

Madison has also made the effort to share her story with nearly 75 families who have children of hearing loss to talk about their journey, what worked and what hasn't. Madison says, “It feels good to share my story with other people. It is nice to have people who understand what it is like and I like to help people.”

Madison, who has unfortunately experienced bullying from classmates and endured a terrifying shocking event, a danger with CIs, wishes people knew a few things about what it’s like to be deaf: “It is hard to understand things and that I need things repeated. Please be kind.”

She adds, “I have had to get use to people staring at my cochlear implants.”

Finally, Madison says, “Not all deaf and hearing loss is the same. I wish kids were more aware of what cochlear implants are and it is not cool to touch or pull them off of my head. Also, deaf jokes are NOT cool. In fact, all jokes about disabilities are mean.”

“Globally, it would be wonderful if humans were kinder to each other. Especially, when someone is different from themselves,” Lauren says. “We celebrate uniqueness in our household, family, and community. Even if Madison cannot hear what someone is saying she can still read their lips. Assuming individuals with disabilities are less than, just makes the assuming person look ignorant.”

Lauren says, “We know how hard she has worked to get her here just to hear, understand, learn, and excel. None of this is lost on us and we are so proud of her and all her achievements.

Over Madison’s 10 years, Lauren says, “We have learned that we are capable of doing hard things and nearly the impossible as a family. We have fought insurance, stigmas, cochlear implant manufacturer, advocated for change and inclusion in companies, the community, schools, sports, and participated in research studies. But at the end of the day no one works harder than Madison. She is resilient, disciplined, smart, and extremely hard working.”