When it was our turn to speak, Li said, ‘My name is Li, this is Mary and Sophie. Mary and I are dancers at Houston Ballet. We’re just hoping you can tell us what’s the best thing for our daughter.’
‘Are you both planning on continuing to dance?’ the older speech therapist asked.
‘We would like to . . .’ I replied.
‘Do you want your child to speak?’ she asked calmly, looking at me.
‘Of course!’ I replied. And she looked at me quite doubtfully.
‘If you both want to continue your careers, then she probably won’t learn to speak,’ she said bluntly.
The full realisation hit me. Li’s eyes met mine and he understood, too. Diagnosis was one thing, but its implications were profound and everlasting. Sophie had not heard anything in her entire life. Her life had been completely visual. Suddenly I could feel the world moving forward but we were at a standstill. As devastating as the therapist’s words were, I knew she had spoken the truth and I admired her for this. Here, just when I needed her, was someone with knowledge and experience of this unfamiliar world.
The discussion moved on to language options for Sophie – sign, cued speech or oral method. For me signing was the last option. How could we keep working and both learn to sign? Even if I learned to sign, she would only be able to communicate with me and not with the rest of our family and friends. And she would never understand Chinese. I couldn’t see how signing would translate to the written words. How could she live without reading?
Cued speech was another option but was not very common. Like signing, it was a visual, phonic-based system, with small hand shapes near the lips representing consonants and vowels, and mouth movements supplementing these. But it was not verbal language.
‘I want to hear her voice,’ I said simply. This was my greatest desire.
After the meeting, we walked past a classroom and looked through the window to see a teacher with a microphone clipped to her shirt. There were eight children aged three to four, each with what resembled a thick plastic necklace connected to a box strapped around their waist. This was their FM wireless system, we were told. It assisted their hearing aids by transmitting only the teacher’s voice through her microphone, even in the noisy classroom environment. I could hear the children making loud noises, and the class looked like mayhem. It was quite distressing. Is this Sophie’s future? I feared.
A couple of days later I took Sophie to an audiologist to be tested for her hearing aids. Carol Cascio was a lovely woman who couldn’t have been more different to the specialist who had delivered the diagnosis like a guillotine! She was warm and friendly, and very good at dealing with parents’ grief.
A test would provide a clearer picture of Sophie’s hearing loss. I sat with her on my lap in a soundproof booth. She played with toys while the audiologist relayed sounds through speakers on each side of the room. If Sophie turned towards the sound, the audiologist would mark it as a response and a clown puppet would appear as a reward. As the test went on, I could hear every sound. I resisted the urge to turn her head towards the sound. If only Sophie would look up! The sounds got louder and louder but still she did not respond. My agony grew as I observed her, seeing her utterly oblivious! The testing dragged on for what seemed like hours of torture as I watched my unresponsive girl. Finally, she turned. She must have heard something! My heart leapt in hope.
Eventually, the gruelling process finished and Carol came into the booth. Sophie gave Carol her usual big smile. Carol didn’t say anything, so I had a sinking feeling, yet I clung to a small thread of hope. Maybe her hearing wasn’t as bad as first thought.
Carol began to explain that Sophie had detected some low-frequency sounds, but that she was profoundly deaf.
‘What do you mean by that?’ I asked desperately. ‘What exactly did she hear?’
‘In one ear we had a small response at 60 to 100 decibels – that’s about the same as a jumbo jet flying overhead, but barely registers for her. In the other ear, it was 60 to 107 decibels, like a very loud rock concert. You and I would go home with our ears ringing, but to Sophie, it’s just a slight reverberation.’
Carol handed me a graph. It indicated, in what was called a ‘speech banana’, the points within the 30 to 50 decibel range at which Sophie had detected sounds and where speech was detected. Sophie had no high-frequency hearing, which is where most of the useful speech sounds are located. My heart sank even more as I realised that even with hearing aids, Sophie would only ever hear the ‘O’ in her name. This final diagnosis hardened my resolve. ‘Right.’ I swallowed. ‘Okay, what happens next?’
‘We will make moulds to fit Sophie’s ears while we wait for the hearing aids to arrive,’ Carol said. ‘The hearing aids won’t enable her to hear, of course, but they will act as amplifiers to enable her to detect sound. That’s the first step.’
As Carol was preparing the moulds, I realised I had to somehow explain to my daughter what was happening. I pointed to my own ear and smiled while Carol pushed a jelly-like substance into Sophie’s ear. Sophie was so good about it all, which saddened me even more.
As we drove home, I started to prepare myself to tell Mum. I knew she would be devastated for both Sophie and me. That night I dialled the familiar Australian number and after the initial greeting, I just came out with it. ‘Mum. We just found out Sophie’s deaf,’ I blurted.
‘Mary, what?’ I could hear the disbelief in her voice.
‘I took her for a test, Mum. An ABR test. An auditory brainstem response test. It shows her response to sounds by looking at her brain activity.’ I took a deep breath. ‘Sophie is profoundly deaf, Mum.’
‘I’m so sorry, darling!’ she said, then asked, ‘What can I do?’
‘Nothing,’ I said, through tears. I told her about getting the hearing aids and trying to learn how we could communicate with Sophie. Immediately, Mum got it. I could tell she understood everything.
‘Oh, sweetheart. So much for you to take in. But I know you and Li will make the best decisions for Sophie,’ she said.
It would take a couple of weeks for the hearing aids to be ready. For Sophie’s sake, we tried to live life as normally as possible until then. I was also soon to go on a ten-day tour to Canada with Li and Houston Ballet. Cancelling at the last minute wasn’t possible. It was excruciating to leave Sophie now, but she would be fine with Nana and Yeye. There was nothing else I could do.
I realised that the hearing world was changing for me. I began listening more closely to nearby conversations, realising, ‘Sophie can’t hear this!’ Even the Mad Mothers group became hard for me to enjoy. Though they were supportive, and sensitive to my feelings, their delight in sharing their child’s latest development was something I could no longer bear. I went less and less frequently.
Too soon, Li and I headed off to Canada with heavy hearts.
‘I really want to see if we can fix this,’ Li said as we departed for the airport. ‘I think we need to leave no stone unturned. I want us to try everything, Mary.’
‘Of course, Li,’ I agreed, but deep down, I believed there was no fixing it. The fact of Sophie’s deafness was now very real to me. I knew that Li was thinking of Chinese medicine. I understood that in this extreme circumstance he needed to turn to his roots. He had a lot of faith in Chinese treatments, and acupuncture in particular. This was his way of dealing with the grief. He was Sophie’s father and felt he should take some sort of action to fix things.