Nearly five months ago, we sat in an audiologist’s office, our two-week-old daughter hooked up to a host of wires and electrodes, and heard (fragments of) the permanent diagnosis that would permanently change our lives. “Iris was born with a mild, sensorineural hearing loss in both ears…one in a thousand babies…needs hearing aids as soon as possible…will wear them for the rest of her life…” and some other stuff about all the tests we’d need to do to figure out why this happened.
At the time, I had no idea what any of this meant. I literally had never heard the word “sensorineural”, and while I guess I knew that old people sometimes lost their hearing and had to wear hearing aids, I somehow had compartmentalized hearing impairment into two categories: deaf and not deaf; and, it felt like I was just told my perfect newborn baby was deaf. This, of course, was not the case, but at the time, I was completely naive to the deaf and hard of hearing world—it just wasn’t on my radar. But, in an instant, it became the most pressing issue in my life.
When I walked into that office, I was simply a brand-new, sleep-starved, hormone-crazed mom, recovering from a c-section, mostly focused on trying to find a breastfeeding latch that didn’t make me literally cry out in pain or rip my husband’s hand off his wrist. Now I was a brand-new, sleep-starved, hormone-crazed mom of a child who was hard of hearing. I couldn’t wrap my head around how this could’ve happened. No one on either side of our families had hearing loss. Both my grandmothers lived into her 90's with totally functioning ears. I had a healthy pregnancy with numerous ultrasounds. I followed all the rules. I didn’t eat sushi or take Sudafed. I did everything right, and this was happening anyway. Why? Why her? Why us?
Like all newborns, Iris was given a newborn hearing screening at the hospital. Most states now require by law hospitals to administer them within a day or two of the baby being born. If you had a baby, you had one and probably didn’t even realize it because they poke and prod them so much in those first 24 hours. If you are going to have a baby, it’s likely explained in a single sentence in your “what to expect” parenting book. Before these newborn screens, which are relatively new, babies who were deaf or hard of hearing wouldn’t be identified before 2 years old or later when speech was already delayed. This is extremely late in the game. From the day a baby is born, her brain is absorbing and storing language. Listening is the foundation of language, so the first 3 years of life are a critical time for babies to be able to hear. If they can’t hear, developmental delays are likely.
When she failed the first time, 24 hours post delivery, we were told it was very common especially with C-section babies to have fluid in her ears and that they would come back tomorrow to try again. In my new-mom haze, I thought nothing of it. I had so much else to worry about — how to fatten up my tiny baby, how to achieve the perfect swaddle, how to keep the hospital monitor from beeping every time I rolled over onto my IV cord, how to walk without splitting in half at my incision site, the realization that I might never sleep again, and, despite the fact that my husband and I had taken all the classes, that we had no idea how to raise a human.
When she failed the second time, 48 hours post delivery, I felt a tinge of anxiety start to creep up in my chest, but again, they said it was normal. My best friend sent me an article from TIME magazine or The New York Times, or some such publication, about the efficacy of even testing C-section babies within the first 24 — 48 hours post-delivery because the fluid build up in their ears so often causes a false positive which leads to unnecessary worry for new parents. Clearly, I told myself, this was the deal.
When she failed a third time, 72 hours post delivery, I tried to fight it but started to cry. It hit me that this might actually be a thing. Ironically, after emailing my husband numerous lists about what to pack for our hospital stay, all he had really done in preparation for the birth was to lovingly create a detailed playlist of all his favorite songs to play for her once she was born. It saddened me to think she might not be able to hear any of them.
The sweet lady who administered the test assured me that she does this all the time and that 95 — 98% of all babies who fail their newborn hearing tests pass when they go in for their follow up test in 2 weeks. She was certain this would be the case for us but strongly encouraged us to attend our follow up appointment in any event. She explained that only 40% of babies who fail in the hospital go back for their follow up which is tragic since early intervention is key for kids with hearing loss — not that we had a kid with hearing loss — but that we needed to make sure regardless. My husband told me it was all going to be fine. If for some freak reason, she did have a hearing impairment, she was born into the right era, he said. There are cochlear implants and all sorts of technological advances these days, and the baby would be totally fine. It’s no big deal. I felt uneasy, but two hours later, we were released into the wild and soon had to deal with the anxiety of strapping a newborn into a car seat for the first time, so the failed hearing tests took up residence in the back of my mind.
When we got her home, we experienced all of the normal insanity that accompanies the first couple of weeks with a newborn. People joke about there being no sleep, but let me tell you, it’s worse than I ever imagined and it is certainly no laughing matter. In addition to newly initiated zombiedom, I quickly became a mad scientist, too—maniacally charting everything. Feedings, naps, dirty diapers, all the medication I was on post C-section. There was also the pain and discomfort of my post-delivery body. I don’t know what hurt more, the incision across my stomach or the cracked, bleeding nipples that were now another human’s food source. And, then there were the hours of crying and screaming, and the circus dance of shushing, swaddling, and sobbing (mine and hers).
Over the course of those first couple of weeks, there were times that my husband and I clearly observed our child hearing. The dog barked, and she startled. She would cry and scream, and I would speak to her, and she would clearly soothe to the sound of my voice. My husband would shush her to sleep, and off she would drift. She could hear. She could definitely hear. I honestly didn’t even see the point in going back for the follow-up when I could take a much-needed nap instead. But, we went. And, she failed. Again.
They explained that Iris had a mild hearing loss, which meant she could hear most things. This is why she was able to hear all of those things at home and why it was all so confusing. She just can’t hear soft sounds, like leaves rustling or faucets dripping or flies buzzing. (I mean, frankly, that part sounds kinda great.) She can’t hear whispers or unvoiced consonants—s’s, f’s, p’s, h’s. It’s the difference between cat and cats, which is why hearing aids are so critical for speech development. Noisy classrooms can pose a challenge for kids who are hard of hearing. Think about being in a noisy restaurant and having to strain to hear the speaker over all the background noise. Classrooms can feel like that for kids who are hard of hearing. She also handed us a packet that contained all sorts of statistics linking kids with hearing loss to poor academic performance, low self-esteem, and high rates of depression.
While I sat there sobbing, I heard another family through the thin wall next door who had obviously brought in their 2 week-old for her follow-up screening. I heard the mother cheer “Yay! Good job! You did it!” I heard them all laugh and celebrate and thank the nurse who administered the test. I heard them leave the office, and I imagined them walking out of the hospital, getting into their car and driving back to their normal lives as normal new parents of a normal newborn baby with normal hearing. I so badly wanted us to be them.
That first week post-diagnosis was the single worst week of my life. I started crying in the audiologist’s office and didn’t stop for seven days. The only time I wasn’t crying was in my sleep (and there wasn’t much of that). I fell asleep crying, woke up crying, nursed her crying, attempted to eat crying, did all of it crying — which made me cry even more because all I wanted to do was to celebrate the fact that she was finally here. I felt guilty that I was feeling anything other than joy and devastated that I was being robbed of this precious time that we would never be able to get back. Since the day my hormones turned on, I have wanted to be a mother and had been dreaming about this time and what it would look like. I envisioned spending my maternity leave going on morning walks with the baby in the stroller, taking her out and about in the sling and hearing people ooh and aah over how beautiful she was, sharing frequent play dates with friends who also had little ones and commiserating over poopy diapers and sleep deprivation, writing funny anecdotes in her baby book and recording her birth story in vivid detail, laying in bed with my new little family and day dreaming about what she’d be when she grew up.
This didn’t feel anything like that. While I adored our precious baby more than I have the capacity to explain and was fiercely attached to her from the start, this wasn’t the movie I had directed in my head. I didn’t want to get out of bed, much less go on a walk. I didn’t have any funny anecdotes or birth stories in me. Even though I felt deeply alone, I didn’t want to see anyone. I resented the fact that my friends had healthy, “normal” children and that they got to worry about things like baby acne, diaper rash and cradle cap. I felt angry and bitter that this only happens to 1 in a 1000 babies, and it was happening to her. It felt like grief; I was mourning the loss of this perfect life I had dreamed up. I suddenly had a kid with a hearing loss and had no idea what impact it would ultimately have on her life. I had so many questions:
What would 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.
Would she be able to go to sleep away camp every summer like I did?
Could she ever play the game “Telephone”?
What about concerts, piano lessons, and loud movie theatres?
Would she hear me call from the other room when dinner is ready?
Could she climb into bed with us on a Sunday morning and hear our giggles?
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?
Will she someday be able to hear her own baby cry in the middle of the night?
Will that baby have hearing loss, too?
The list goes on and on, and I wanted answers. Even though I was a total mess, I felt an insane amount of pressure to act fast. Every specialist we spoke to and everything I read online suggested that she needed to be fit for hearing aids as soon as possible. After three months was even too late. I knew I couldn’t ever fix her hearing loss, but I was determined to charge full steam ahead with whatever I could do. So, the next couple of months were spent in the hospital, in doctor’s offices, in waiting rooms outside of doctor’s offices, in hell on the phone with the insurance company or appointment schedulers, in my own head worrying about all the things I had decided Iris would miss out on in her life and paralyzed with fear that her hearing loss might be accompanied by more serious health issues.
There was the day we went to one of three pediatric ear specialists at the “best” children’s hospital in the city (the state, for that matter), who seemed to know nothing about mild hearing loss, deferred to whatever the audiologist said, and basically had his nurse give us a Xeroxed checklist of all the doctors and specialists with whom we’d need to meet to determine if her hearing loss was isolated or part of a larger syndrome that affected multiple organs.
There was the day that said ear specialist from the “best” children’s hospital in the city called to tell me in a chilly monotone that her urine sample was extremely abnormal and that we would need to schedule a kidney ultrasound since there are some syndromes that affect both the ears and the kidneys. That was the moment my husband broke down and finally lost it. Luckily, our pediatrician insisted that we come in to retest her using a more baby-friendly method of urine collection (the first time, they basically just taped a bag onto her whole genital area and then ripped it off when they were done. It. Was. Awful.). He said if her labs were that abnormal, she would be running a high fever and very ill which wasn’t the case. When the second test came back normal, we learned that the “best” children’s hospital in the city had contaminated the original sample due to improper handling. Consequently, that’s the day we decided to leave the “best” children’s hospital in the city.
There was the day she got her MRI, and I couldn’t feed her past 3 am. She shrieked all the way to the hospital, up the elevator, into the waiting room, and into the prep room where I had to pass her off to her daddy so she would calm down and sign some papers acknowledging that, in rare cases, the anesthesia might leave her brain dead. We watched her drift off to sleep, passed her off to strangers, and left her in the exam room.
There was the day she had to get her blood drawn for this new hearing loss genetics panel. Then, the 15 weeks we waited for results. Then the day the doctor called to tell us she has one copy of a rare mutation that’s never been reported anywhere in the world, so it’s likely pathogenic, but they’re just not sure and nobody can really predict what that means for her future. I scratched the name of the gene down on a shopping bag in the Whole Foods parking lot and (of course) rushed home to (stupidly) Google it. My heart stopped when pages and pages of results came up for Usher’s Syndrome, which is responsible for a majority of deaf/blind cases in the world. The Usher’s Syndrome Googling spree spanned several weeks. I could teach a med school level course in it now. The genetic stuff is a whole other giant mind fuck that brings up all sorts of big questions. Do we even want to know her genetic make-up if it can’t be altered? Do any of us really want to know what’s in store for us or what we’re predisposed to? Any diagnosis at this point is going to be clinical and not change our course of treatment for Iris, so what’s the point? But, then again, if we don’t do it, will we miss something important that could help her down the line? It’s a lot to consider.
In addition to all the medical trauma, there was a fair amount of social unrest as well. Like the day we toured a popular daycare in our neighborhood, full of normal hearing children, and I broke down sobbing in the car on the way home. That’s something that happens often. I’ll be at the grocery store or the park, a baby yoga class or a birthday party and suddenly feel a sense of utter isolation when I look around and see that Iris is the only kid wearing hearing aids. It’s the same feeling I get when I consider that in eight years of teaching, I’ve never had a student with a hearing impairment. My heart breaks for her that she has to deal with this for her entire life and none of these other kids do. I wonder if this will ever go away.
Seeing the way people look at her is also really hard. In the beginning, I had to fight the urge to take out her aids when we went out in public because I just didn’t want to deal with it. There was the day we went to get tacos, and one of the waiters smiled at her every time he passed by our table and eventually stopped and exclaimed, “Those things in her ears break my heart.” Or, the day we went out to eat and a lady approached us, about to do the normal baby-gushing-routine, but caught a glimpse of Iris’ hearing aids and, instead, became tongue tied and said nothing. I wanted to murder her, but instead, just went home and cried.
As time goes on, the days get easier. The crying dissipates. You realize there’s no time to bury your head in the sand when this adventurous, curious baby is demanding that you show her the world—that you read to her, talk to her, dance with her, play with her; blow bubbles over her head, play her our favorite jams, attack her with zerberts; peek-a-boo and shake shake and bye bye; swing at the park and float in the pool and stroll down the street and watch the rain fall and feel the breeze blow. Luckily, with her hearing aids, she can hear all of those things. We are fortunate to live in a time where technology allows her to fully experience the world. So, ultimately, I am grateful that we caught it early and that we have the choice to do something about it. The day she got fit for her hearing aids was probably the first day I didn’t cry. Once they were in her ears, it hit me that this is a good thing! She can hear! This is a triumph, not a tragedy. Plus, she looked really cute in them. See?
I read an article a few months back called “Welcome to Holland”. It was about how it feels to raise a kid with a disability. To paraphrase: your entire life, you want to go to Italy. Everyone goes to Italy, and they post all the perfect pictures to prove it. So, you save up, buy the guidebooks, plan the trip, book the tickets, pack the bags, and get on the plane. You’ve waited your whole life for this trip, and as the plane touches down after the long flight oversees, you’re exhausted but elated because your dream is finally about to come true. But, instead, the flight attendant gets on the loud speaker and says, “Welcome to Holland”, and you realize you got on the wrong plane. This wasn’t what you expected. So, you get off the plane and initially feel disappointed but soon realize that Holland ain’t chopped liver. It’s beautiful. And, while it may be a different trip than you expected and a different trip than your friends took, it’s breathtaking in its own right.
We landed in Holland, and like the article said, it is beautiful.
There was the day she smiled at me for the first time which was the coolest thing that has ever happened in the history of the world, until the next totally cool thing happened. Like the day she discovered her own tongue or the day she became truly captivated by the ceiling fan. There was the day she tried to French kiss the dog and me and her grandma; the day she held a rattle and the day she ate her grandfather’s nose.
There was the day she rolled from her belly to her back and the day she rolled from her back to her belly; the day she discovered she could splash water, eat her own fist, and communicate via raspberries and dinosaur squeals. There was the day she grabbed her feet and clasped her hands together like Mr. Burns; the day she touched my face; the day she laughed; the day she licked a popsicle and ate mushy bananas for the first time.
There are so many glorious days to celebrate.
Like the day we sat nervously in the audiologist’s office for our three-month follow-up ABR, our three and a half month old daughter hooked up to a host of wires and electrodes, being told — again — that she (still) has a permanent hearing loss. And, it felt completely, 100% okay. Two different audiologists and our ENT had explained that if the hearing loss is stable after three months, it’s a good indication that it will stay stable. So, when the audiologist announced that there was no change in her levels, I felt the most tremendous sense of relief but also gratitude. I literally found myself thanking God for her hearing loss. The funny thing is, nothing had changed. Iris still had a mild hearing loss that would make it difficult for her to hear soft sounds and whispers. Hearing aids would be critical for speech development. Noisy classrooms would likely be a bigger challenge for her. We are likely going to have to advocate for her in the school system and, more importantly, teach her how to advocate for herself. None of the news had changed; but I had. Because I had the great honor of spending the last three months bonding with this perfect creature—this vivacious, busy, strong, alert, receptive, smart, curious, outspoken little baby who is healthy, alive, and thriving; this incredible little being, who is in no way, shape, or form defined by her hearing loss and demands every day that I in no, way, shape, or form define her by her hearing loss.
She may be small, but she is mighty.
Aside from my husband, she’s my favorite person in the world to hang out with. She is the only person who could so effortlessly make me smile, laugh, sing songs, read books, and play silly games at five in the morning. She already has so much personality, energy, and expressivity. She is sharply alert. She already glows. There’s no way she can be anything but great. There’s no way she won’t forge full steam ahead with strength and confidence. Her genes, her labs, her hearing levels—none of that will determine how this kid turns out. We will. If we raise her to be strong and confident, she will be. If we raise her to be open-minded and compassionate, she will be. If we don’t focus on her hearing loss, she won’t focus on her hearing loss. It’s ultimately up to us to create a safe space for her to grow and thrive into whoever she wants to be. And then it’s up to her to write her own story.
Granted, none of this changes the fact that I worry incessantly about everything. I worry about her getting ear infections once she starts school and having to get tubes in her ears. I worry that she will be picked on for being different. I worry that she will feel like she doesn’t fit in. I worry that she will struggle in school. I worry that her hearing loss will progress over time. I worry that she will someday go blind. That’s the scariest part about all of this and what has fed my Google-compulsion at all hours of the day and night. If someone would have just told me from the start that she has a mild hearing loss, period, end of story, and now you have all the information, you’re welcome — I would have praised the universe for all of its glory and goodness. But, that’s not the case with any of this. It’s not a nice, neat, gift-wrapped diagnosis. It’s a condition that has a ton of variables, and the unknowns are what kill me: not knowing if the hearing loss will be accompanied by more significant health issues; if her rare, genetic mutation will ultimately have an impact on her eyesight; if her hearing loss will stay stable or be progressive; if hearing aids will always be necessary or, on the flip side, if cochlear implants will eventually be necessary. I fully anticipate that the night before every audiogram from here on out will be a sleepless one. But, the thing is, every parent is in that boat to some degree in that none of us has a crystal ball. Every day we leave the house, any number of potential catastrophes await our children. I also have a collection of non-hearing loss worries. I worry that she’ll be the victim of a school shooting. I worry that we’ll get in a car accident. I worry that she’ll fall asleep and not wake up in the morning. All parents worry. My own mother takes the cake on the worry game and neither of her children had hearing loss.
The truth is, on the day to day, Iris is just a totally rad, normal baby, and I get to be her mom. We just have this extra thing we have to deal with which is mostly just a nuisance. There’s a lot of time spent dealing with “gear”. Every night, we unlock the doors, remove the batteries, and dry the aids in this special solution. Every morning, we do a battery check and a listening check and a mild-moderate struggle with Iris to get them in her ears. We take lots of trips to the audiologist for broken doors, outgrown ear molds and fittings, faulty tubing.
We go to speech therapy a couple times a month. We did our follow up hearing test in May and have another one in July. It’s time consuming. It’s also expensive. Hearing aids typically run $3500 — $6500 a pair and none of it is covered by insurance because, apparently, the ability to communicate isn’t medically necessary. Hearing aids are like really, really, really expensive retainers. I anticipate some good ole fashioned dumpster dives and trash digs in our future. Now, she has entered the stage where she puts everything in her mouth, so I anticipate that the hearing aids will go there soon enough and that will be a new struggle. Our audiologist tells us that when she’s a teenager, she will rebel against wearing her hearing aids like teenagers rebel against everything their parents say to do.
The hearing loss journey, like the parenting journey, has only just begun. And, like any great journey, there will be ups and downs, twists and turns, triumphs and tragedies. But frankly, I’ve hit my limit on despair. I know I had to go through all of that darkness to ultimately come to a place of acceptance, but it’s exhausting to feel so hopeless and tortured all the time. (Maybe this is why teenagers sleep so much!) It’s also virtually impossible to feel like shit when I spend 16 hours a day of my summer break with the smiliest lil butterball baby in da world.
We have also managed to cobble together the most phenomenal support system of medical professionals, specialists, friends, and family, and it has made all the difference. They have all reassured us that we are doing everything in our power to provide her with the best possible quality of life. We have an incredibly caring and knowledgeable pediatrician who always encourages us to view Iris as our most valuable piece of data—to focus on the fact that she’s happy, thriving, and developing completely on track (if not ahead). We have a wonderful audiologist and speech therapist at The Center for Hearing and Speech who have had everything to do with making all of this manageable. A few weeks ago, Iris had a speech evaluation and she is already 5 points ahead of normal hearing children in her speech development. The Center really pushes kids to stay ahead of the curve so they don’t fall behind. They also offer a weekly summer music class that we attend with other babies who have hearing loss. It’s been helpful to talk to other moms who have gone through this, so I don’t feel so alone. I’ve talked to some wonderful, strong women over the past several months who have given me a ton of hope. In particular, our audiologist introduced us to a local family whose three year-old-daughter has hearing loss, and I have formed a uniquely close bond with her mother. It’s been therapeutic for both of us to be able to talk to someone else who has experienced all of this first hand. I also find comfort in reading about people who have succeeded despite their challenges with hearing loss. I am now mildly infatuated with Derrick Coleman of the Seattle Seahawks, for instance, who is the only player in the NFL with a hearing impairment. Prior to Iris’ hearing loss, it would have been difficult for me to discern the difference between a football and a basketball, but his story is truly inspiring. Plus, he posts all these adorable pictures on his Facebook page of kids sporting their hearing aids, and every post is marked #noexcuses. I mean, is that not the greatest thing?
Above all, Iris is lucky to have her dad, who has never had an iota of doubt that she will be anything but awesome. He has been to every single doctor’s appointment, including those where she was in my belly, and rarely misses a speech therapy appointment. She means the world to him, and it makes my heart melt daily. She has also been blessed with angels for grandparents who have been there to hold us up every step of the way. They literally let us live with them on and off over the last several months—once for 6 weeks—when our 100-year-old house had a surprise mold infestation, a broken air conditioner, and, finally, a family of mice living in the kitchen. Yes, all of that also happened over the last several months. But, if all of this has taught me anything, it’s that — much to my dismay — I can’t control anything. So, I have no other choice but to live in the present moment and focus on what I concretely know to be true today: I have a gorgeous, healthy, strong, happy baby who happens to have a mild hearing loss. And, every day she teaches me yet another lesson I need to learn. Like the one about how we are capable of so much more than we think we are. All the cliches are suddenly true. Life is hard, but you love your people, and you hold each other up. The amazing man who vowed to hold me up for eternity keeps reminding me that we are just like every other parent in that we have no idea what the future holds for our child. We can only (learn to, try to, struggle to) live in the present, love and support our child unconditionally, and try not to screw her up too much. As evidenced by the photo below, that will likely be the greatest challenge of all.