January 2014
On January 21, 2014, at 12:17 p.m., I gave birth to a magical creature from the Universe of All of My Hopes and Dreams. A daughter: Iris Phoebe. I felt a tugging and a pulling and then the relief of that piercing cry as the doctor raised her high above the blue C-section curtain like Simba from The Lion King. “The Circle of Life” could have underscored the entire scene. It was the closest I’d ever come to some sort of spiritual nirvana. A catharsis. Mike gasped loudly and exploded into tears of joy. I gasped loudly and exploded into tears of joy. The baby shrieked with all the force her little lungs could muster. The nurses wrapped her up in her sweet little blanket, and Mike carried her over to me, laying her warm, tiny body in my arms. She immediately started sucking on my finger for comfort. The sweetest thing. She was finally here—so real, so small, so beautiful.
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 got back to LA. His plan was to come home, meet the baby, get in some family time, fly back to LA, and check himself into rehab. It was a monumental step, and we were gushing with support. We figured if he could just get there, the problem would be solved. A happy ending was on the horizon.
Harris walked into my house at 8:00 p.m. wearing his signature baggy jeans, white T-shirt, blue hoodie, and black North Face backpack. I assaulted him with a bear hug. He was home. He was safe. He was going to get sober. Seeing him in the flesh gave me a momentary break from my despair, although the scent of stale smoke that accompanied him into every room was especially potent to my postpartum nose. I was acutely aware that he would be holding my new baby in a moment, smelling like he was recently set on fire.
He took the baby, awkwardly at first, not knowing where to put his hands for proper support but became more comfortable after a few moments. I could see his spirit lift as he took her in. I could see that he loved her already. She was already validating his decision to get help. He stared with wonder into the eyes of his niece, into all that innocence and hope and promise, and said, “Hi, I’m Uncle Harris.” My heart bounced around in my chest like a pinball.
• • •
Over the next few days, Harris set up camp on the couch with Iris. She slept on his chest for hours at a time, and he was at peace with her there. It was good to have him home, even though I cried through most of his visit. It wasn’t even crying, really. It was just this sort of constant leaking out of my eyes.
“This is the most depressed I’ve ever seen you,” Harris said one day, holding Iris on the couch during one of her napping jags. “Steph, this will always be normal for her,” he said matter-of-factly. “She’ll never know any different. And then she’ll get her hearing aids, and those will be normal, too. She’s not carrying a heavy burden. She’s just a chill baby who wants to be a baby. This is hard on you—not her.” Such a simple notion, but those are often the ones that ring most true and something my brother was always good for. And I needed to hear it. I still felt like shit, but I filed his sentiments away and pulled them out often in the future for review.
Harris researched a variety of upscale rehab facilities while he was home. They all looked like spas and employed professional chefs. The one he finally chose in Malibu had a long history of celebrity clientele. He had terrific insurance that would cover his stay, but as a frame of reference thirty days at this place without insurance would literally cost more than I made in three years as a public-school teacher. But this is how Harris did things: excessively and to the extreme.
I trace this behavior back to childhood. When we were kids, my mom would turn Harris loose inside the grocery store with his own cart, allowing him to fill it to the brim with whatever sugary garbage he could find. Once, when he was six, we went to a Ruth’s Chris Steak House for someone’s birthday. Grandma (Dad’s mom) and Ganny (Mom’s mom) were both there. Harris wanted lobster, and Grandma told him to go pick the one he wanted from the tank, while Ganny shook her head in exasperation. Naturally, Harris picked the biggest one. This poor lobster was over five pounds. The waiter came over to the table clutching the squirming crustacean between his metal tongs. “This is a $150 lobster,” he said, certain an adult would intervene and say, “Please put that beast back in the tank. Our apologies. His eyes are bigger than his stomach.” But that didn’t happen. “Of course, he can have it!” Grandma exclaimed. So, Harris got the $150 lobster and learned that the finer things in life could easily be had. I think he ate two bites.
As an adult, this tendency toward overindulgence continued. I was eight months pregnant when he came home for Christmas a few months earlier, and we drove an hour outside of town to a highly-rated-on-Yelp steak house for my mom’s birthday. Harris insisted we order the authentic Japanese Wagyu four-ounce filet mignon from Kagoshima Prefecture for $100 even though nobody wanted it but him because it cost $100 for four ounces of meat. He wanted this dish in addition to our entrees, as an appetizer of which we could all take a single bite: a $25 bite. I, of course, said this was an absurd waste of money, but he argued that if you have the opportunity to experience something for the first time, why not do it regardless of the cost? Money wasn’t money to my brother like money is money for normal people; it was merely a thing you needed to experience life to the fullest.
This isn’t to say that everything he owned was gilded and covered in diamonds. Quite the opposite. While he enjoyed expensive multicourse meals, his true love was fast food. He appreciated cinematic masterpieces but DVR’d every season of The Bachelor. He had a professionally decorated home, yet a pink bottle of Mr. Bubble was always perched on the side of his bathtub. This was Harris. He did life in his own unique way and was as complicated and contradictory as they come.
Since he had the money, Harris decided to splurge and spend it on the finest of rehabs, and we were confident that his thirty-day luxury hiatus would fix whatever bug had lodged itself inside of him. It had to. Because despite outward appearances, his pilot light was off. Even though Harris was always surrounded by friends and made fun and funny a guiding priority in his life, he struggled with sadness. In public, he was still everything that made him, him: gregarious, funny, charming, outgoing. But over the last year with the back pain and the pills and the on and off with the girlfriend, he’d become more detached and distant from us. His energy for conversation was either ephemeral or absent. When we were together as a family, we’d find ourselves firing off a zillion questions about the goings-on of his life but would get very little in return. Lots of “yes” or “no,” and virtually no reciprocal questions. It often felt like talking to a teenager, frustrating and even hurtful at times. I justified his behavior by reasoning that maybe he just needed to shut down and reboot when he came home. He felt comfortable enough to not have to be “Harris” around us. He had so much success in such a short time at such a young age—maybe it was just too much.
Rehab was the solution, the cure-all that would resurrect him from the living dead. Even my dad, the medical professional who wrote actual textbooks, was certain this would do the trick. The thirty days would conflict with Iris’s baby naming, which sucked, but we had to act fast on his willingness to go to treatment. Getting sober would make all sorts of future family events possible. It would keep him alive. We would just lie to everyone and say he had a work commitment. Easy.
I hugged him tightly before he headed back to LA. Although I was stranded in my own canyon of sadness, it had been comforting to look up and see my brother sitting there with me over the last few days. I was relieved he was finally willing to take action and confident it would work. Harris was a golden boy. He could do anything.