The two year anniversary of Gianna’s cochlear implant surgery is approaching, and I thought I’d write a series of posts describing our journey as parents of a Deaf child. We begin at the end, where we are now, and future posts will look back at where we've been, so that you might see the stories from the past the way I see them, through the lens of this present moment.
We were the last people to leave the dentist office on a snowy evening in December when the receptionist leaned over the counter and whispered in the same way you might whisper a dirty word, “I’m so sorry….there must be a mistake on your daughter’s chart. It says….it says…well, it says that….she’s….deaf….but she’s not!”
“Oh no,” I replied with a smile. “She is.”
The lady pointed out with astonishment that Gianna was talking, that she sounded “normal” (how I have come to despise that word!) and that, incredibly, it seemed as though Gianna could hear.
It is all pretty crazy. My daughter has a profound hearing loss, but with her cochlear implants and lots and lots of therapy, she is learning to talk and listen. It’s been a wild journey that I never expected to take, and one that I would not change for a minute. When we first learned of Gianna’s hearing loss it came at the end of a year of specialists and searching and agonizing. It was a relief to know that we were not imagining things. There was something different about the G, and it was just that she couldn’t hear.
We fought with insurance companies for coverage for cochlear implants as we wrestled with the implications of such a surgery. Would she hate us later? Think we were trying to “fix” her? These are the questions that can still keep me up at night. I worry if we mainstream her later that she will be made fun of. I worry if we don’t, we’ll be keeping her options limited. I want her to know that she is Deaf, but it need not totally define her. I want people to see her as Gianna, not a science experiment.
When her speech processors were first activated, she cried and cried and signed ME DON’T LIKE. It felt like when we put them on her head we were torturing her, but when I would ask her each morning, “MY VOICE? HEAR-YOU WANT??”* she would sign, “YES.” And put them on. Almost two years later, I still ask her from time to time, “Do you like to hear my voice?” And she says, “Yes, mama. And I like to use MY voice!”
Like the secretary at the dentist’s office, for most people the sound of my Deaf daughter talking is a revelation; a miracle even. A question I am frequently asked is “what was her first word?” and “when did she first tell you she loves you?” But I have to say…I don’t know. As amazing and incredible the fact of her speech is, it was the American Sign Language that captivated me.
I remember clearly the first time she signed MILK and the first time she awkwardly used the ILY** sign. I remember how she could sign DAD and GRANDMA and GRANDPA perfectly for ages, but would not sign MOM….she preferred to call me MILK. I remember very clearly the day we learned that she could not hear, and I learned I didn’t love her any less.
*for those not familiar with American Sign Language, it is a visual language with its own grammar and syntax. From my (admittedly limited) understanding, when translating an ASL sign into written English it is called a “gloss” and is denoted by using all capital letters, as I have done here.
** The I LOVE YOU sign….The one sign pretty much every person knows.
|signing ICE CREAM. clearly, the kid's a genius. if you look closely, you can see her purple sparkly hearing aids|