Chapter 1: No Response, Part III
I don’t remember much of that month between tests. I don’t think I told many people about what had happened, probably because I didn’t want it to be true and saying it would make it real, would put it out into the world and not just inside my own frightened consciousness. I didn’t do any research into hearing loss or deafness, for the same reason.
I told myself that one of the tests had to have been wrong. Who was to say this last one was the accurate one? I’m sure I spent more time than I had before trying to startle Grace in her crib. But not every kid has that built-in startle response, the pediatrician had told me, especially if they’re feeling safe when you try to startle them. I started calling her name for no other reason than that I hoped she’d hear me and show me some response.
Did I initiate conversation after conversation with Jason about it? Did he get sick of the subject? He approached the news by appearing unfazed by the seriousness of what-we-didn’t-know-yet. He said, “If it’s nothing, great. If she’s deaf, we’ll deal. She’s healthy. She’s not dying.”
Why then did I feel like I might be losing her?
About a month before, we had visited Jason’s family in Western Massachusetts. I remember sitting on Auntie Pat’s back porch, shaded from the hot sun by the awning. Grace lounged, happy, in her carseat, which we carried around with us and which became increasingly hard to lug as she as grew. Grace was wearing a pink one-piece jumper with pale purple flowers that Auntie Pat had sent when she was born. My face close to Grace’s, I had said “Bah bah bah” and she had responded, immediately, with the same: “Bah bah bah.” I had turned to see if anyone else had heard. Jason and Reggie were right near by, and they noticed it, too. I thought, she must be hearing something.
It had been like this the whole time – one minute, I would feel with absolute certainty that Grace could hear me. The next, the doubt crept back, as I thought: there’s no way anyone should sleep through that, or she didn’t even hear that clap, just inches from her ear, she didn’t even twitch. But then she’d turn her head as Jason came upstairs, from a place that was behind us, a place I couldn’t imagine she’d seen him come from… It was like flipping a coin, or picking flower petals from a daisy:
She hears me.
She hears me not.
The day of the ABR, I waited for the mid-day appointment at home, checking email, doing paperwork, trying to get my mind off of things, while Grace napped, oblivious to it all. The phone rang. It was our friend Juan, his excited voice telling me that Jen had had the baby: their first, a daughter. He invited us to come out to the hospital for a visit that night. I hesitated a moment, wondering what kind of state I’d be in by then, then suppressed the thought and said yes, we’d be there.
When I hung up the phone, I just sat there, staring ahead at nothing at all, and then went downstairs to pack up the diaper bag. When Jason came home, we were strangely quiet and awkward around each other, and we didn’t talk much as we drove the short distance together to the Georgetown campus.
It was the end of summer, when faculty and staff were returning to school, so the parking lots were completely full. It took far too long to find a space, and as we drove around in circles, and the time of our appointment got nearer, I struggled to maintain my calm.
We went in and met Heidi, who was friendly but seemed very young and not particularly self-assured. We knew that the ABR had to be performed while the patient was asleep. But Grace, who had fallen asleep on the drive over, had woken, wide-eyed and smiling, the moment we’d turned off the engine. Heidi told us we could try to walk Grace around for a while to see if she’d fall back to sleep. When that didn’t work, we went back to the office and apologized to Heidi. She reassured us that they booked extra long ABR appointments for this very reason. Said to take our time.
We spoke in hushed voices, and I fed Grace in a chair in the corner of the small office. She finally fell asleep, at least an hour after the appointment was supposed to have started.
Heidi set up her equipment. She was surprisingly deft at doing so without making more than a tiny sound. She stuck several electrodes to Grace’s head. The wires ran to an enormous, intimidating machine; a huge gray-black metallic box that sat on the floor with monitors, dials, and lights, and went almost all the way up to the ceiling. She slipped an ear nub into each of Grace’s ears. Then she began running the diagnostic program. When we needed to speak, we whispered very, very softly.
How optimistic of us.
This ABR takes a long time. Maybe an hour. Grace slept without stirring the whole way through.
I’m pretty sure I believed Heidi would tell us that Grace was hard-of-hearing. That the reason we’d gotten inconsistent results up until then was because she heard some things, but not others. It made sense, this reasoning, at least to me.
When it was over, Heidi took a breath and said, “I haven’t gotten any response.”
“What does that mean?”
“It means she has not responded to any of the sounds I’ve played.”
Yes. But what does that really mean?
We had to practically force anything more out of her. Finally, she said, “It means she has a severe-to-profound hearing loss.”
What does that mean?
“Well, I’ve tested her up to100 decibels, and there is no response at any of the frequencies or decibels I’ve played. The ABR doesn’t go any louder, so I can’t tell you more than that. She might be able to hear something… but we can’t increase the intensity any further, without potentially damaging her ears.”
Heidi was struggling with this. Afterward, Jason said he thought that this was her first Deaf Diagnosis. That she’d likely never had to break this news to parents before, she was so visibly shaken. She didn’t want to use the D word. You could tell. It didn’t make us feel any better. We needed definitive. We needed Big Words. We needed to know the whole truth.
We understood enough, though, I guess. “The machine doesn’t go any louder” and “profound” were big enough words to make the point.
We went home. I was dizzy, and felt sick to my stomach. What did we do when we got there? Did I sit down at the kitchen table and collapse? Did I try to take a nap? Did we walk the dog? Did we call anybody? I don’t know. At some point in that endless afternoon, I remembered our plan to go visit Jen, Juan and the baby. “What was I thinking?” I groaned. Jason said, “It’s okay, we don’t have to go. I’m sure they’ll understand.” But something in me felt like I should, even though I was a complete mess.
So we went. Grace and I sat in a waiting area while Jason went in first to say hello (visiting children were not allowed into the post-delivery wing of the hospital). The moment Jason left, Grace started crying. I had a big 8-ounce bottle with me, but she didn’t seem to want it. I walked her around, pushed her in the stroller, tried to focus on her beautiful face and forget about everything else. I tried to relax, but frankly it felt like my entire universe was up-ending. And now she was crying and I couldn’t stop it. The waiting room was packed, there was nowhere to sit, and the television was on. Not wanting to disturb everyone, not knowing where to put myself, I took Grace out into the corridor and paced and waited for Jason to come back. He seemed to be gone for a very long time.
After finally gaining my confidence with her, I remember feeling, right then, like I suddenly had no idea what I was doing; like I had no idea how to be her mom.
Finally, Jason returned. I asked him if he had told Juan or Jen about Grace. “No,” he said, his brows making a ‘v’ as if to say “why would I have done that? Now?”
“Right” I said, sheepish, “of course not.” I told him I hadn’t been able to get her to stop crying, and that she wouldn’t take the bottle.
When I got to Jen’s room, I muscled my face into a smile before going in, then sat down next to her and asked how she was feeling. She felt great. She glowed. I think she narrated the details of her labor, the delivery, the past day. I remember realizing as she was speaking, though, that I had no idea what she had just been saying. Like a big Erase stamp had imprinted itself on my brain throughout the entire conversation.
On our way out of the hospital, Jason realized he had to go back for something – I think we’d brought a gift and had forgotten to give it to them. I sat in the car, in the hospital parking lot, watching the door, wishing we could just be home. I noticed a mother and her young daughter standing inside the hospital lobby, talking. I could see them, deep in animated conversation, as they spoke to one another. In a moment of future-sight, I imagined it was Grace and I, standing there under the deepening shadows. In my mind’s eye I could see us, only we were signing to each other – sharing a secret language that no one else could read – telling secrets, like floating in a lovely isolated bubble. This vision filled me with such conflicting feelings of sadness and wonder. I knew right then that the path forward was not going to be simple – not clear-cut or one-dimensional or easy.
It was late, and it was pouring. The roads were oddly crowded. And the whole way home, Grace wailed. It was a wrenching sound. My body hunched over and I started sobbing and I could not stop. Poor Jason. He must have had a hard time concentrating on the road that night. I tried to pull myself together so I could help Grace by reaching around and trying to give her the bottle from the front seat.
The rational side of me knew she was crying because she was tired. Or hungry. Or because she didn’t like the way the headlights cut through the dark and reflected off the rain-slick road into her eyes. But in my lost and sorry state I felt as if Grace was crying because she could not hear.