Monday, August 22, 2011

In the Beginning, There was Silence

Yesterday marked two years exactly since Gianna's cochlear implant surgery, so today seemed as good as any to continue posting about our journey with Gianna's hearing loss. As promised, we shall now go back to the beginning. Way back. To this:
On Gianna's due date. I'd wait almost a full two more weeks to meet her.

To prepare to give birth, Brad and I took classes in the Bradley Method of Natural Childbirth from a very nice couple. At the time it seemed insignificant, more of a curiostiy really, that the husband was a child of Deaf adults. He also happened to teach American Sign Language at Eastern Kentucky University.

Since we were planning to birth at home with a midwife, our family doctor offered to refer us to the hospital for a newborn hearing screen after Gianna was born. I remember saying, "Ah..that's ok. I'll let you know if I think we need it. I's gotta be pretty obvious if your kid can't hear you. And besides...what are the odds that would happen anyway?" I didn't know that hearing loss is one of the most common congenital anomalies.

The first night after she was born, she cried and I sung to her, shushed her, spoke to her. Everyone said it's a marvelous thing, the way your baby knows your voice right away, but I felt like she didn't know me. It being my first go-round with the mothering deal, I figured that maybe not *every* baby responds so dramatically to their mother's voice. At two months, I made an appointment with our doctor and said, "There is something wrong. I don't know what, but I feel somehow like I can't communicate with my own baby." We went to a lot of specialists; developmental pediatricians and neurologists and physical therapists but we got no answers.

My list of worries grew, and with it, my list of explanations.....Gianna wasn't babbling (maybe she's taking her time?) She didn't seem to know her name (maybe we use too many nicknames?) She didn't seem to follow conversations or socially laugh as I'd seen other older babies do (maybe we were boring? not very funny? incompatible senses of humor?) I don't know when exactly, or why, but sometime around 10 or 11 months I began to wonder if my baby could hear me, but I was scared to mention it to the doctor...I'd just spend almost an entire year being dismissed or ridiculed.
 Then I experienced the moment that every parent of a deaf child has had:
(begin at about 9:25)

At Gianna's one year well baby visit, I finally asked for a hearing test. A month later, after failing a behavioral hearing test, we were referred for an Auditory Brainstem Response test, during which she would be sedated.

I was a ball of nerves on the way to the ABR, until we met a family in the elevator. Our kids were the same age and we started chatting. They asked us why we were going to the hospital. I explained that we thought maybe our daughter was deaf, and we were hoping to get some conclusive answers. They said they were bringing their son in for his first round of chemotherapy.

When the audiologist told us gently that she wasn't getting any responses to the hearing test, all I could think was, "This is ok. She's not sick. She's not dying. She's just deaf." It's crazy to say, I suppose, but I was relieved. We had answers and now we had a direction.

We were sent home with a lot of pamphlets about cochlear implants, but we wanted to communicate, and we wanted to communicate NOW. We'd lost so much time already, so the first thing I did when we got home was get Signing Times videos from the library, and we started to sign. Within a week, Gianna learned to look expectantly at my hands and face when she saw or experienced something new. Watching her sweet little hands talking to me was bliss. We were finally communicating, and it was difficult to imagine interrupting it all for an invasive surgery on the off-chance she might learn to talk.

I emailed our childbirth teachers, and through that connection I took two semesters of American Sign Language at Eastern Kentucky University as a guest of the university; I didn't have to pay a dime and I was able to bring Gianna with me to the language lab. We started going to the "Deaf socials" at the mall twice a month. As we tried to immerse ourselves into Deaf culture as best we could, we agonized over cochlear implants.

Ultimately, we decided to do the surgery because we wanted her to have every opportunity. We wanted her to learn ASL and be a part of Deaf culture but we wanted her to be able to communicate with our family and with anyone else she wanted. We wanted her to be able to learn to read and write well, and getting her access to enough sound to hear phonics was a huge selling point. We had a long and sometimes emotional battle with our insurance company that pushed the surgery date back almost a year from when we initially thought it would happen. During that time I realized that we had a fantastically happy kid who was picking up ASL like a sponge. We were choosing the implants as a tool, not as something to fix or cure her. This realization brought me a lot of peace.

signing DAD
The day of her surgery we were allowed to hold her as the anesthesia took effect and then ushered to a private waiting area; the surgery could take up to six hours. I went immediately to the bathroom and cried. It could have been the hormones (I was 20 weeks pregnant with Dominic at the time) but I hated the idea of putting something in my baby's head, and to be honest, if I think too long and too hard about the electrodes stimulating her auditory nerve and the coil snaked into her cochleas and the magnet next to her skull...I feel ill.

But when I hear the joy in her voice, when I can empty the dishwasher and talk to her at the same time (still a novelty to me) or listen to her tell me a story in the car without worrying I'm going to cause an accident because I've got one eye on the road and one on the rear-view mirror...I think it's worth it. I know that whenever she wants to, she can take the speech processors off, hand them to me, and go back to her silence, to her beginning.