To the Mothers of Kids Who Can’t Hear

To the Mothers of Children Who Can’t Hear,

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Iris. 2013. Picture courtesy of her parents, Stephanie and Mike Wachs. Read her story: https://medium.com/@stephaniewittelswachs/and-now-we-are-parents-38994257baaa

Your newborn baby failed her hearing test.

I want to find a way to hold your hand as your baby grows up, and whisper to you that she’s OK, that you’re OK, that your baby will be who she’ll be as an adult, that hearing or not hearing has very little to do with whether she is kind, loving, gentle or compassionate.

You have so many worries.

Don’t worry. Hearing is not everything. When I was 24 months old, my mother heard me standing outside of our pet bird’s cage, saying “Baba’s Birs.” I remember those birds. They were brightly colored parrots, and when they flew, little pieces of their feathers would fly around and fall like snow, fluttering to the ground. My parents wondered if I had a cold, or if I wasn’t hearing the unvoiced consonants at the end of words or the M in Mama, so they took me to the doctor, then to an ENT.

I failed hearing tests. But my parents never told me those words. To me, I never “failed” anything… it was just my normal. I had cholesteatomas in both ears – something my ENT told my parents many years later that I was the only child he had ever seen with them in both ears in his entire career. In the early 1980s, that was early intervention. I had seven surgeries between 3 and 5 years old to remove the bones in my ears. I had speech therapy. I had my head shaved in strange patterns. Then, I wore hearing aids forever. I strongly dislike hospitals and get a little panicky around people in white coats, even though my dad was a surgeon.

At the point when my doctors and parents were talking about trying to reconstruct my inner ears, I told them, at 7 years old, I didn’t want any more surgeries. I would just keep my hearing aids because they were part of me. I never knew any different, and neither will Iris. Hearing loss can be a pain or a gain for her. The early childhood surgeries were traumatic, but my parents made it a gain by giving me as much power and autonomy over my ears as they could. They never told me that I couldn’t do something because I couldn’t hear, even when I was standing in the outfield at 2nd grade softball in my own world because I couldn’t hear what was going on in the game. Having to work a little harder at life made me learn to read people’s faces and body language well, it made me an ambitious little Scrapper, and now, I’m the boss at my job.

Can't find the hospital bracelet I wore when I was born, but I have three of these... This one is from one of my last ear surgeries when I was 4 and a half.
Can’t find the hospital bracelet I wore when I was born, but I have three of these… This one is from one of my last ear surgeries when I was 4 and a half.

In middle school, a boy called me “Metal Ear.” That hurt. I cried a lot. I was awkward and bullied, but who isn’t awkward in middle school?

You have so many questions.

What will she do at swimming parties? Or during bath time? Or during the summer when kids run through sprinklers or decide to play in the rain. She’ll take them off, and the world will be muted. But she’ll still see the rainbows from the glint off the water in the sun and her friends laughing faces. She’ll still be able to play Marco Polo, except maybe she won’t ever be Marco (but being chased is way more thrilling anyway). Or she’ll forget to take them off before jumping in the water, and that will be very expensive for you.

I used to want to sleep with them on because I was afraid at night. Somehow, having the microphone in my ear was comforting, knowing I could hear everything, knowing what to expect in the dark. My parents let me sleep in them. I was grateful for that.

Would she be able to go to sleep away camp every summer like I did? You’ll send her with a plastic baggie with extra hearing aid batteries for the camp nurse to hold onto, and she’ll be homesick. And you’ll cry because your baby is old enough to sleep away.

Could she ever play the game “Telephone”? Not very well. But we all need to be knocked down a peg sometimes, right? It builds character. Instead of worrying about this, worry about how she’ll afford to update her old hearing aids when they stop working, insurance doesn’t cover aids at all, and she has three kids to provide for. Fight that battle for her now.  Hearing aids can now connect as a Bluetooth device to iPhone, and she can talk on the phone through them and listen to Spotify through her hearing aids. So don’t feel too sorry for her.

What about concerts, piano lessons, and loud movie theaters? I hate concerts, but not because I can’t hear the music – it’s because of the smells and the crowds. There were no newborn hearing screens when I was an infant, and it took my parents about 24 months to realize there was a problem. Because I spent the first two years of my life with a muted sensory environment, I think my baseline for tolerance of lots of sensory input is pretty low. I have eagle eye and a keen sense of smell, but my inner ear balance (vestibular) is off… I get carsick in the back seat, I loose my balance easily. But that doesn’t stop me from wearing stilettos. Loud movie theaters are fun. And I took piano lessons and majored in music (before I changed my mind) in college, wearing hearing aids the entire time. Maybe she’ll want to be a drummer. Or an actress. Or a writer. Or a Mommy. The biggest effect my lack of hearing had on me may have been my social preferences: perhaps living in a world of my own when I can’t hear has made me a quiet, seemingly withdrawn, person to others. But that’s OK because the people who know me are good with that.

Would she hear me call from the other room when dinner is ready? She probably will. She’ll pretend she doesn’t and blame it on her hearing. I remember once, as a teenager, telling my mother that I was “turning her off,” and turning down the volume on my aids.IMG_6372

Could she climb into bed with us on a Sunday morning and hear our giggles? She’ll smell you; she’ll see you laugh; she’ll make eye contact and have a giggle of her own when the Tickle Monster comes and your skin to skin contact gives her comforting closeness.

When she gets older and falls in love, would she be able to have whispery pillow talk with her husband like her dad and I always had? Oooo, this one’s intimate. I usually take off my aids when I’m with my husband. Not super sexy to have the whistling feedback from the aids when our heads are close together. When she gets married, her spouse will love her enough to repeat things 3-4 times when she says, “Huh?” or “What?” after getting out of the shower, waking up in the morning, talking from separate rooms. She’ll drink wine and watch The Bachelorette with the closed captions. He’ll think it’s cute, and it will be one of the things about her that sets her apart from other women and makes her story different. My husband has lateral nystagmus, so we’re a pair.

Will she someday be able to hear her own baby cry in the middle of the night? If she’s like me, she may sleep with her baby right next to her, so she knows whether the baby is OK at all times, so she can cuddle and breastfeed in the night, and she won’t have to worry about hearing the baby from another room. Or she’ll be lucky that her husband wakes up out of necessity when she doesn’t, unlike many husbands who seem to sleep through the midnight wakings!

Will that baby have hearing loss, too? I wept when my first-born passed her newborn hearing screening in the hospital. My throat was tight while they tested her, and I waited to hear that she too was flagged for a different kind of life. All three of my children hear perfectly. On this note: Don’t let hearing loss prevent you from having more children. My little sister is my best friend. If my parents hadn’t had her out of fear, I’d be lonely.

Most of all, dear mother of a child who can’t hear, forgive yourself. It’s not your fault. Grieve. She’s not what you expected. She’s got a story. She’s unique and different, and that makes her more lovely.

This post is inspired by this post by my high school friend, whose little Iris didn’t pass her newborn hearing screens.

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Vanessa Knight has been a part of the Kansas City community for 11 years (a native Texan), living in the Overland Park area with husband Josh, two children (Sophie is 6, Jude is 5), and three Labradors. A clinical marriage and family counselor serving the area, Vanessa works with those who hurt from life experiences, relationships or trauma, helping both individuals and families to love (www.securecounselingclinic.com). When she's not working, Vanessa's favorite stay-at-home things are Sequence, puzzles, picnics on the Nelson-Atkins Museum lawn, messy art projects, and trampoline jumping!