Last summer Lei and I were talking one night before she went to bed. She had been reading a book that I thought put too much emphasis on the romantic interests of a girl barely older than Lei. I said I want her to stay focused on developing her inner self, not her appearance.
She replied, “I’m worried I’m going to lose all my confidence and only care how I look to boys. That’s why I want a cochlear implant.”
She said she could barely hear anymore, even with her high-powered hearing aids, and had to ask people to repeat things for her over and over, and she still couldn’t make out what they were saying. She said she felt like she was losing her self-confidence and retreating into herself.
All-righty then.The next day, after a long talk with my husband, plus a few tears and deep breaths, I called our insurance about where we could go to get her evaluated for a CI.
A few months later she had her first implant. That was October, 2014.
When the implant was first stimulated two weeks later, Lei heard my voice and burst out laughing, choking out a description while doubled over: You sound … like you inhaled … a blast of … helium!
Now four months later she has just had her right ear implanted. Today we go to the surgeon so she can be cleared for activation in two weeks.
When Lei was first diagnosed with moderate-to-severe hearing loss, cochlear implants were a controversial topic among deaf and hard-of-hearing adults, though many ENTs and hearing parents saw them essentially as a cure for deafness.
People in the Deaf community, seeing deafness as an identity and vibrant culture with its own language, arts and history, didn’t (and don’t) see it as something that needs to be cured. Hearing parents, however, frequently haven’t ever met or gotten to know a Deaf adult. For them, deafness presents a very big problem: how am I going to communicate with my child?
Fortunately, before having Lei, I had taken an ASL class while in grad school, taught by a Deaf adult who, in addition to being a terrific teacher is also a gifted actor. I could imagine Lei as a confident and capable deaf adult. I also knew about the cochlear implant controversy and was hesitant to plunge right in with an invasive surgical “solution.”
As I was absorbing the news of Lei’s hearing status, Hurricane Katrina was raging through New Orleans. Television news showed babies separated from their families and people dying for lack of clean water or electricity. Even though I was far from the devastation in New Orleans, I got Lei an identity bracelet with my phone number on it. I also decided I didn’t want to be too dependent on technology.
But I got used to carrying hearing aid batteries everywhere. I got used to having Lei check to see if her aids were working. We signed and spoke at the same time (this is known as Simultaneous Communication, Contact Signing or Total Communication). Lei could hear decently with her hearing aids. I figured that I would follow Lei’s lead when it came to cochlear implants.
One challenge of our choice to use Total Communication was that Lei wasn’t always interested in looking at me and her dad when we signed. We both worked hard to learn to sign and made sure we signed as much as possible, but to sign and speak to a hard-of-hearing, signing, lipreading child who didn’t maintain eye contact made communication extremely difficult.
And over the following years I learned something about myself. I am soft spoken. Even when Lei wore her hearing aids, which worked quite well for her, I had to speak up because frequently she wouldn’t look at my face or hands to lipread or see my signing.
“Lei,” I would boom, “Are you hungry?!” I was exhausted, sleep deprived, obsessively learning sign language, and busy being a full-time language instructor, cook, housekeeper and laundry technician. Raising my voice felt like so much extra work, but I wanted to make myself heard.
It happens that, like many children, Lei can be a bit of a non-responder even when she hears me. But how did I know for sure she could hear me? So I would repeat myself, but louder this time.
“LEI! ARE YOU HUNGRY?!”
The effort of projecting and the need to repeat myself rapidly whittled away my patience.
It seems that when I yell, even if I’m not angry, it feeds back to my brain and suddenly I am angry.
I struggled with this for many years. I lost my temper, apologized, struggled to calm myself with “Mommy time-outs,” looked for parenting methods that would create incentives for answering instead of ignoring (but then sometimes I was punishing Lei because her hearing aid battery had died or her hearing aid wasn’t turned on).
And then, after what seemed like an eternity, Lei got her first implant. For the first few weeks after activation, she heard relatively little. They don’t turn the implant on full-blast right away. But over the next few months an amazing thing happened: I didn’t have to yell.
Well, I still yelled sometimes, because I’m a normal human mother. But I didn’t have to yell all the time for everything. Gradually Lei heard more and more. And she answered more and more.
How many of our family dinners, outings or movie nights ended early in a storm of anger and tears because of misunderstandings, failures to communicate and the frustration of trying to use visual communication with someone who always looked away? Countless … until the last few months.
Sometimes now we go whole weekends without a big blowup from anyone. It’s like living in a completely different family.
My husband said the other day that if he would have known what a big difference the CI would have made to our family, he would have wanted Lei to get one much earlier.
I don’t like playing the “coulda-woulda-shoulda” game, but I definitely know what he means. Even just one CI has made a huge difference for our family, and I can’t wait to see what a difference two will make.
I don’t regret waiting nine years, almost to the day, after getting her first hearing aids. I trust my daughter, and I’m grateful for everything.