It was a perfect moment in time.
A couple of weeks later, sleep-starved and running on empty, 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 shocking 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…no cure” and some other stuff about the dozens of tests we’d need to do to figure out the cause.
I had no idea what any of this meant but was devastated all the same. Something was “wrong” with our baby, and I couldn’t interpret it into news that made any sense. No one on either side of our families had hearing loss. Both my grandmothers lived into their nineties with totally functional ears. I had a healthy pregnancy with numerous ultrasounds. I followed all the rules and honored the restrictions. I didn’t eat sushi or take the Sudafed. I did everything right, and this happened anyway.
While I sat there sobbing, I heard another family through the thin wall next door who had obviously brought in their two-week-old for her follow-up hearing screening, too. 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 imagined them walking out of the hospital, getting into their car, and driving back to their normal lives as normal new parents of a newborn baby with normal hearing.
Before sending us on our way, the audiologist handed us a fat packet with all sorts of data on how children with hearing loss inevitably fail at life in countless ways. Only two weeks old and already at risk of falling behind socially, emotionally, and academically, of being depressed, alienated, and possibly even suicidal someday.
This wasn’t the movie I’d directed in my mind. That movie starred a radiant postpartum mother and her perfect newborn baby: Mom taking a brisk walk every morning with her baby tucked tightly in her gender-neutral stroller under layers of soft blankets or nuzzled close to Mom in her organic baby sling as passers-by ooh and aah over her beauty, sharing frequent play dates with friends who also have little ones, commiserating over poopy diapers and sleep deprivation, writing funny anecdotes in a handmade baby book from Etsy, lying in bed with the perfect little family, daydreaming about who she’ll be when she grows up.
While I adored my precious baby and had been fiercely attached to her from the start, I didn’t want to get out of bed or go on a brisk walk. I didn’t have any funny anecdotes in me. I didn’t want to see anyone. I resented the fact that my friends with “normal” children had luxury worries like baby acne, diaper rash, and cradle cap. I felt angry and bitter that this only happens to three in one thousand babies, and it was happening to her, and I was consumed with anxiety about the impending genetics test, kidney ultrasound, eye exam, CMV, EEG, MRI, ABR. Never before had letters been so scary. I was mourning the loss of the perfect life I’d dreamed up. I suddenly had a child with a permanent disability and was terrified about what it meant for her future.
Mike, on the other hand, had been taking it in stride from the beginning. When she didn’t pass her newborn hearing screening at the hospital, he simply said, “She’ll just get a cochlear implant or something.” I was on the other end of the spectrum, spending most of my days and never-ending nights with a baby attached to my bleeding nipples, crying uncontrollably, compulsively Googling articles about hearing loss and related genetic diseases and typing a laundry list of questions for doctors and specialists in my iPhone Notes:
Will she need speech therapy?
Will her voice be affected?
How do hearing aids work? Is it like normal hearing or does it sound weird?
Will she be able to hear birds chirping? Whispering?
Can we raise our voices or will it be too loud?
Concerts, music classes, dance classes, movie theaters, airplanes?
Crowds/group conversations—hard to hear?
Can she hear us if we call for her from the other room?
Do we have to be looking at her when we talk?
Background noise distracting?
Mainstream school or special ed?
Does she wear them all the time? Bedtime? Shower? Swimming?
What can she hear now?
Everything was unknown. I felt so powerless.
• • •
Fifteen hundred miles away, my brother was waging a similar war with himself. It had been almost a year since he told me he was a drug addict, and it was becoming harder and harder for him to manage his life behind the scenes. His on-and-off-Suboxone, in-and-out-of-therapy approach to sobriety wasn’t working anymore, and his therapist finally said he had to go to actual rehab in order to get actual sober. Harris, however, still had a collection of excuses about why he couldn’t go, chief among them work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work work. (Lies.)
A week after we received the hearing loss diagnosis, my brother booked a flight home to meet his three-week-old niece. He also agreed to start actual rehab once he
