The Emotional Side of Progressive Hearing Loss for Parents
“Mommy, I can’t hear.”
No parent ever wants to hear their child cry out in distress. These are words that my mom and dad had to hear more than a few times as I grew up. The very first time, my mom says she sprung out of bed in a panic — she didn’t know what to do. She wasn’t a physician nor was she an audiologist, so she was left to wonder - Was it just a cold? Was it an ear infection? Something worse?
As a pediatric audiologist I have seen several parents of children with hearing loss, including children who experienced progressive losses or sudden drops in their hearing. I am in a unique position to provide support, resources, and offer personal stories through what I have seen in the clinic, research and through my own hearing loss journey.
I have experienced sudden drops in hearing more than a few times. When I was younger, it happened to occur every two years, seemingly without any rhyme or reason. My ENT and audiologists were thinking I had a fistula, then cochlear hydrops, then finally enlarged vestibular aqueduct syndrome and Pendred syndrome. My parents took me to Kent, Cleveland, Akron, New York and Chicago. I received acupuncture, took diuretics, oral and intratympanic steroids and changed my diet. I had a graveyard drawer full of hearing aids, earmolds, FM/remote microphones...endless parts and pieces.
I cannot, however, say that I’ve been there as a parent. This evening I decided to sit down with my parents and reopen the discussion.
I have never really heard my dad talk about it until this conversation. My heart broke as he confessed that there were times that he was sad, and honestly depressed, because it was completely out of his control. He questioned why was this happening to his daughter?
“It kept happening - it was something I couldn’t get used to.”
In some ways it got easier. As time went on and these episodes continued, they learned what to do, where to go, new ideas to try and that although I was feeling lost and upset, I'd eventually adapt to my new norm. In other ways it was actually more devastating each time: How much worse could it get? Why was life continuously knocking her/us down?
My father clearly recalls a memory of my school calling him at work, asking him to bring in fresh batteries. My teacher reported that I said my hearing aids weren’t working. He watched as I hurriedly swapped the batteries out and put my hearing aids back on. “It doesn’t work,” I restated. While he hoped it was merely just the hearing aid that was broken, he felt there was a strong possibility that it was actually me and my hearing.
My heart felt heavy when my mom volunteered, "When your child is suffering and looks miserable, your heart just aches. You know this now, as a mother, right? Your whole body just aches."
"But you know," my dad looked up. "You cannot give up. You cannot give up on yourself, on your child, on hope. If you give up, then your child loses any and all chances to succeed. So you can NOT stop or give up."
"There came a time that I just had to stop thinking about what you couldn't do and start thinking about all the things you COULD do," stated my mom. “A parent must advocate for their child. You’ve got to clear the path for them until and so that they can do it for themselves.”
She continued, “You need to talk about it though - I talked to Mr. Shimmel (my elementary school principal), Father Pat, Dr. Flexer (my pediatric audiologist) and Betty (fellow parent of child with hearing loss). You need to.”
Our priest, Father Pat, told my mother, “You know when you buy something and someone gives you short change, we are quick to protest and want to fix things - but when someone gives us back too much, we don’t always draw attention to it?” This really helped my mom shift her perspective to focusing on the things I could do.
Parenting is a unique job like no other. Having a child with specific or special needs is another kind of journey. And when disability is of the recurring or progressive type... it takes an even bigger toll. It’s an ongoing challenge that you have to watch and may not be able to control or prepare for.
Mom & Dad - Thank you for seeing me for my possibilities, helping me achieve and create the life I get to live and for NEVER giving up.
Dr. Michelle Hu, Au.D. is a pediatric audiologist and has been practicing in Southern California for over 11 years. She was fit with hearing aids as a toddler and now utilizes bilateral cochlear implants. She is also a mama of two little girls and a military spouse. She is creator of @mama.hu.hears an Instagram account where she shares from both her personal and professional hearing loss journeys.
