Metal never sounded so sweet: cochlear implants go bilateral at our house

So while I’m biding my time waiting for a pie recipe from a south side optimist and sweet potato expert (you know, you can never hurry these food stories), I thought I might talk about something completely different.  There isn’t a speck of food in this story.  But it’s a pretty good story anyway, so I’ll tell it.

My daughter Angeliki, she’s nine.  She’s been mostly deaf since sometime after she passed her newborn hearing screening.  We kind of figured everything out and got her set up with hearing aids by the time she was three.  I wrote a story about it that appeared in the Tribune and you can see it here.

When she was 6 she got a cochlear implant.  It took us awhile to get there, first because the therapist who did the initial assessment thought she was fine with her hearing aids.  But then, the therapist didn’t live with our daughter.  Also, our daughter wanted one.  She had a friend at school who wore a CI, and she was curious about it.  So I took her to the audiologist who showed us the equipment.  So many options, so many colors!  It was all very exciting for a little girl.  Me too.  She was sitting in my lap when I said, “here, honey, this is the part that goes in your head.”  Our daughter was a very sciencey little child so I thought she’d be interested in that.  (How fantastically off the mark we can be about our children sometimes, we parents.)

Goes in your head.  Slowly she turned to look at me with wide eyes.  I could tell there was a horror movie score suddenly playing in her mind. ree ree ree REE REE!!

“What?”  she asked, startled.  “Goes where?”

“I, um, it, it’s an implant.  This part is…um…goes…in your head right back….here.  Yeah.  You know?”

She straightened herself up in my lap, turned around, and addressed the audiologist.  “No.  No thank you.  We’re finished here.  I don’t want one.  Come on mom.”

We waited.  I talked to lots of parents.  None of them were helpful.  I would ask: how did you get your child on board with this?  They answered, every one of them: Why would we do that?  One father took umbrage at the question.  “Look, we don’t let our children make our family’s major decisions.”

I took a little umbrage at that.  No, and we don’t let our children pick stocks, either.  But.  It IS a device that will be in her head for the rest of her life, and it is HER head, and she DOES know about it, so the cat IS out of the bag, and we will NOT proceed without her buy in.

We tabled the conversation completely.  After a few more months she herself was getting tired of straining to hear.  Hearing, when you’re hard of hearing, is an exhausting business.  Her hearing aids were at just about the limits of what they could do for her.  She revisited the topic, wanted to learn a little more about the device, visit the hospital to learn about surgery.  For some reason she was ready.

So we did it.  Late summer, before first grade.  I’ll skip the whole transition, the process of learning to hear with that device.  It was a long road, weekly auditory-verbal therapy, wildly erratic violent mood swings, household sporadically overtaken by a short terrorist.  Accompanied by a refusal to ever wear her hearing aid on the other ear, ever again.  (Yes, the hearing aid we finally bought, without aid of insurance, because hearing aids are not covered by insurance after using loaners from Children’s for a year.)

Difficult process, no doubt.  But wow, wow, wow, how can I explain the improvement in her hearing comprehension?  How can I relate the changes in her social interaction?  Now, she could actually sit close to another little girl and share whispered secrets.  Now she could follow her teachers–and classmates–in school.  Now she could hear us call her down to dinner, she could recite a poem she wrote at a school assembly, she could take flute lessons, she could sing the Orthodox liturgy with the choir.  She’s just a part of things, of everything, more, much more.  And eventually the terrorist has faded away altogether.

Last year she started agitating for the second implant.  This is not how it usually goes.  Children don’t usually agitate for surgery and a gruelling rehab process.

But this time I wanted to wait.  I knew she depended on her natural hearing, what little she had left.  She used it for music in particular.  CIs don’t process music as well as they do speech because music is far more complex than speech.  CIs also tend to knock out any remaining residual hearing.  If someone is entirely deaf, you’re not losing anything.  But if you’re hard of hearing, there will be a trade off, and I wasn’t sure I was ready for it.  Add to this the fact that my husband was out of work for six months and we had no medical insurance for a $100,000+ procedure.  So I explained to our impatient girl, again and again: we will think about this more when daddy has a new job.

Daddy got the new job, implant inquiries were undertaken.  Surgery was scheduled for mid-December, grandparents booked plane tickets, Christmas preparations were more or less put on hold, and Angeliki was delighted with a delight that superseded the normal Christmastime whimsy.

Her school friends were incredulous that she wanted to go under the knife.  They made her good-luck cards with pictures of crazy-eyed surgeons wielding bloody knife high over head and Angeliki laughed and laughed.  The outpatient surgery went off without a hitch, took about three hours.  Our priest came to see Angeliki after surgery, and Yiayia and Pappou were there too, and it turned out our nurse was Greek and had the same name as our daughter, which practically no one, anywhere, has.  It was a merry crowd that greeted our daughter after her groggy wake-up.  Literally half an hour after she woke up they gave her apple juice and goldfish and said she’d be fine to go home soon, and we were out in another half hour.

You have to wait about three weeks to a month to get the CI activated as the surgery site heals.  This was a slow, difficult month, but far slower for our daughter than it was for me, I grant.  It turned out she was now completely deaf without her implants on.  I didn’t feel right about that but Angeliki confided to her father:  “I knew that might happen, Dad.  It was a trade-off.  I wanted this.”

Turn-on was four days ago.  I can’t believe it’s only been four days since her two-hour “mapping”–that’s what they call the procedure to activate the implant and begin finding the right level of nerve stimulation for each of 22 digital cells.  On our way there she was elated, uncontainable, saying, you know mom, it wasn’t the surgery I was waiting for.  This is really the thing I’ve been waiting for for more than a year.

It was hard work for two hours and she was left with a lot of strange noise.  Another thing she knew to expect, but disruptive and unpleasant whether you know it’s coming or not.  We left the audiologist’s office subdued, quiet, happy but in a full-happiness-deferred-to-the-future kind of way.

On the way home she assessed all her fancy new accessories, things to better utilize the implant.  Like a headphone jack.  Oh, we had one of these for the first implant, but it hadn’t ever worked especially well.   I figured headphones were sort of a pie-in-the-sky thing implant companies made to give the impression you could listen to music on an iPod.  She couldn’t wait to show this one to her brother, an 8th grader who loves his music, specifically, all varieties of metal.  When we got home she ran upstairs to sit her brother down and unload all her implant tchotchkes and show them off.  Out came the headphone jack, out came her brother’s iPod.  I’d say it was five minutes, maybe ten, when they both came hurtling down the stairs, shouting at the same time.

She: “mom! mom! mom!”

He: “You should’ve seen her smile when I played a song!”

She ran to me and hugged me.  “Mom!  It sounds so beautiful!  So pure!”  “What does,” I asked.  “The headphones!  The music!  I can’t believe it!  I’m listening to Happy Man!”  (Our favorite–non-metal!–song, by The Prodigals.  Here it is so it can become your favorite too.)

Her brother made her a new playlist. She tells me it is long, very long, and includes diverse things like The Who (“you know that song about that deaf guy, mom”), Holy Blood (“they sing in Ukrainian!”), Alice Cooper (“schoooooool’s out! for! summer!  schooooool’s out! for! ever!”), and lots of metal.

I had been bracing myself for some weeks for the coming category-5 hurricane which might find its way over our house and stay there for, oh, eight months, a year.

But there seems to be a big difference between six years old and nine.  Between not knowing and desperately wanting.  And our girl seems to be ready for the fight ahead.  Because now she has to be patient with the long effort to learn to use her new device.  Now her old implant has to teach her new implant how to hear.  Now her brain has to translate the sounds she’s getting from the new device (“like Yiayia’s crystal being dinged with a spoon”) into useful information like words, laughter, the notes of a flute, and the ear-splitting screech of a metal guitar.

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