I couldn’t sleep, and I didn’t want Jason to see me cry. Again. I seemed to be crying all the time. I went downstairs and collapsed onto the couch. I remember picturing our basement tenant hearing me, but I couldn’t shut it off. I pretty much lost it. I was feeling so sorry for us all.
Grace would never hear Tori Amos. Stevie Wonder. My voice. She didn’t know her own name. She hadn’t heard He’s My Guy or Can’t Find My Way Home or Golden Slumbers or any of the songs I’d sung to her as I rocked her up and down and up and down the hallway, trying to help her fall asleep. We would spend the rest of our lives translating for her. I would have to learn a whole new language just to communicate the simplest things with her. How on earth could we ever have intricate, elegant, meaningful conversations about anything? How would our extended family ever really know her? How would I really know her? Would I be slashing constantly at a thick, eternal fog between us, trying to erase the differences we’d slam into?
I grieved. I had lost her. I was impossibly sad.
I’ve asked for forgiveness from the universe many times for thinking so – it felt like someone had taken Grace away from me. I’m sorry, Grace. I didn’t know. I had no idea.
And yet, nothing was different, really, except that now we knew she couldn’t hear. Grace was still Grace. She was still intensely focused and tuned in to everything around her. She still elicited astonished responses from anyone who took the time to look even fleetingly in her direction, because even then, already, she looked into you as if her life depended on making a connection. She was still smiling constantly. She still slept great, once we got her down. She still wasn’t a very big fan of milk. She still had hair that hadn’t decided what color it wanted to be yet… Blond? Brown? Red? Her eyes were still amazingly blue-green. She was still healthy. Strong.
Everything was different. Everything.
I was a mess at work. I shut the office door and tried to be professional but failed miserably as I told the two young women I supervised, as well as my bosses, that Grace was deaf. My supervisors were kind but not overly outward in their sympathy – possibly made uncomfortable by the news and unsure of how to respond.
Something in my conversations with my mother during those early weeks gave me the sense that she didn’t really, fully believe that Grace was deaf, because she didn’t want to. It made me frustrated because, I realize now, until she believed it, really believed that Grace was deaf, she wouldn’t be able to understand how I was feeling. We have a picture of Grace and me, my mom, and my maternal grandmother on our wall. She is wearing little blue jeans, and if you look closely, you can see that she’s also wearing hearing aids. We’re all smiling, although I think all three of us adults — me, my mom, and my grandmother — are smiling sadly. Only Grace looks truly happy.
My parents had come down just after Grace’s diagnosis to take care of her so that we could go to our friends’ wedding. It must have been no more than a week after we’d found out. When we arrived at our hotel in Dallas, we met up with two of our closest friends from college, J and M, at the hotel pool. We had called them and told them about Grace’s diagnosis over the phone, so they already knew.
Jason remembers it being hard to know how to tell our friends and family about Grace’s deafness. He wasn’t sure how to present the information. She was healthy, and she was thriving. He recalls thinking that there was no easy way for our friends to process it. I recall only feeling a deep sense of reassurance and sympathy the moment I hugged them both; I felt safe, understood, and supported by those friendships, and by their intimately open response to our situation. It was the same with our friends J and A. There were a few times, some of them several hours long, where I nearly forgot about the cloud of deafness hanging over my head, and was able to actually enjoy myself at the wedding.
And it was good for my mom, too, because while we were gone, she had time to reconcile herself to Grace’s deafness, by herself and at her own pace. When we came home, she told me, “I was changing her diaper on the changing table, and I kept saying her name, louder and louder. And she didn’t hear. She really can’t hear anything.” She said it matter-of-factly, like she just had had to test things out for herself.
The chaos of the silent world
When you learn that you’re going to have a child, there is a part of you that has to acknowledge the possibility that something might go wrong. You think about these possibilities as that kid grows in your belly, but it is all so abstract. You can work yourself up into a frenzy worrying, until finally you take a deep breath and tell yourself that worrying like this isn’t going to help anything. You’ve taken the screening tests that are available, and things look okay. Nothing seems out of place or raises red flags in any of the ultrasounds. There has been nothing odd or out of step about the pregnancy. For the rest, you’ll just have to wait and see. You force yourself into this more practical approach to your pending parenthood, knowing that, more-so than anything else, the road with this child on it’s way is going to be full of unexpected things. Unforeseen challenges.
When the baby arrives, and she seems just perfect, you remind yourself that maybe sometime when she is school-aged you might have to address something – learning disabilities, perhaps, or behavioral problems. That come adolescence, you might hit some serious snags as the social world and physical metamorphoses possess the kid you’ve known all this time and suddenly you’ve got your hands full.
That’s just the way new parenthood is. You don’t dwell on thoughts like these, because you’ve got sleep schedules and outings, and daunting feeding challenges, and never-ending diaper changes to deal with. But then, just as I hit my stride, just as I was starting to truly enjoy myself, I was thrown into a swirling realm of bewilderment and fear, when Grace was identified as deaf. I was suddenly dealing with this bizarre grief that I felt guilty for feeling, but that I was feeling nonetheless. It swept like a fog over every waking moment, every action, every breath, every bite of food. It was so personal and isolating.
This made having to dive into a new world and learn so many things – important things – things that need to be learned fast and fully – just so much harder. There was so much to learn, so much I felt I really needed to truly understand. And none of it had ever been remotely on my radar before. We had to understand the differences between severe hearing loss and profound hearing loss, or figure out whether there was any meaningful difference between the two at all. Ultimately, what I realized mattered was that however you classified it, Grace had enough loss of hearing to be considered truly deaf, and that we could not expect much of a benefit at all from hearing aids. But we had to try them anyway.
 My understanding is that the term “diagnosis” is not looked on favorably by many in the Deaf community, as it inherently suggests an illness or problem. While this is difficult for most hearing people to grasp, the short of it is that for many Deaf individuals, Deafness is not a defect, it is simply a difference. The Deaf equate this difference to an ethnic identity, for example, rather than a handicap or deficiency. For this reason, many Deaf people prefer to say that a child is identified with hearing loss, rather than saying that he or she is diagnosed. But when Grace was four months old, the word diagnosis was the one we used.