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Sharing Stories

Joel’s Story

“Where’s your implant, Lucy?”  I toss out teasingly to our youngest daughter. 

Lucy launches into an explanation, “Daddy, we don’t have implants.  Our ears aren’t broken.”

I have to smile.  Lucy and I both have perfect hearing.  My wife Michelle and daughter Ellie are deaf, but now have cochlear implants. 

Even though she knows I’m just teasing her, Lucy still has that natural tendency to make sure everything is clearly understood.  In our family, that’s been part of her life experience.  So many times, it is Lucy who has to notice the doorbell ringing or the stove beeping.  It is Lucy who relays a message to her mom or the meaning of a specific word to her sister. 

She’s been born into the role, but she plays it with compassion.

After our first baby, Ellie, was born with profound deafness, we knew there was a chance that Lucy would be also – something like a fifty percent chance if she was a girl and a ten percent chance if she had been a boy. 

It didn’t take long for us to know that Lucy was going to be very different.  Ellie had been a quiet baby.  Lucy cried all the time, or so it seemed.  Screaming to hear herself scream is what we would say.

Of course, after everything we had been through, we welcomed her cries.  We had come a long way.

When I met my wife, Michelle, she was in college and wearing hearing aids.  She wore them mostly for class, maybe ten percent of the time. 

Over the years, she kept saying that that her hearing was getting worse, but it wasn’t that noticeable to others until her pregnancy with Ellie.  That’s when Michelle’s hearing deteriorated significantly, but once Ellie was born, all of Michelle’s attention turned to the baby.

Michelle suspected from the beginning that something was wrong with Ellie’s hearing.  Everyone else thought the baby was fine.  Ellie would wake up when we walked in the room.  She looked at us when we talked to her.  In retrospect, we think that her other senses were compensating for the hearing loss.

But Michelle she knew. She had that motherly instinct that you often hear about. She knew that Ellie was deaf even after 9 doctors told us Ellie could hear fine and that Michelle was just over reacting.

When Ellie was about seven months old, we caught her in a sound sleep and we banged pots and pans together as loud as we could next to her.  She didn’t even flinch.  That was when I was finally convinced that something was going on. And that is when Michelle was determined that we could no longer hide from the realities. That is when Michelle decided we had to get some reliable answers and find a doctor who believed us and who could help us.

The next year was interesting.  There were tests and more tests. And there were tears and more tears.  Plus, Ellie had to wear hearing aids for at least twelve months, something which is just disastrous for a one-year old.  She hated them.  She cried.  Her ears hurt.  Getting them inserted into her tiny ears was simply awful.  After we’d finally win the battle, she’d squirm those little fingers in under the hearing aids and fling them back out. 

Many parents have the experience of being at the grocery store with their toddler dropping things out the cart repeatedly just to see the parent pick them up.  For Ellie, it was flinging the hearing aids.  There we were, searching the shelves of canned goods, listening for the “whistling” sound emitted by the hearings aids, while Ellie giggled in the cart at the fun game she was playing.

During that year, we explored all the options that existed for Ellie.  We sought several medical opinions.  We visited the Illinois School for the Deaf.  They accept kids starting at age 3, but we couldn’t bear the thought of sending Ellie away to school. 

The bottom line for us in the decision process was opportunity.  Yes, Ellie could learn to sign and she did and still does to this day.   Yes, there are many accommodations that help people live with deafness.   That simply wasn’t enough for us.  We wanted Ellie to have every opportunity to communicate with the world around her. 

Michelle is very resourceful and spent hours on the Internet researching our options while weighing the pros and the cons of the procedure and the options available to Ellie. This was not a decision we made overnight.  Rather, it was one made over the course of about a year and half and countless doctor appointments - not to mention tens of thousands of dollars.

There’s a lot that leads up to an implant procedure, so I think we were a little surprised at how smoothly everything went once we got to that point.  Carle Clinic in Urbana did a great job giving us lots of information and preparing us for what to expect. 

Ellie got her implant first.  Michelle went through the procedure about eighteen months later.  The post-operative healing process for both went as expected, just a little rougher on Michelle.  Ellie was playing only hours after her procedure, while it took Michelle three days just to be able to get out of bed. 

Beyond that, people had told us that it would take at least six months to get used to the computer-generated signals coming from the implant.  Michelle absolutely loved hers from Day One and with Ellie, the implant was a huge relief after dealing with those hearing aids for a year.

Michelle adjusted so quickly to her implant that is was really amazing. I took her to Lone Star restaurant a few hours after she had been hooked up to sound the first time. I can vividly remember her looking at me with a dazed and confused look saying, “What was that?”  Michelle was hearing someone at the table behind us tearing open a sugar packet. That was certainly a defining moment – a moment that I won’t ever forget.  It was the moment I knew that both Ellie and Michelle were somehow going to be okay. It was the first time in many months a sense of peace came over me.

Ellie’s road to hearing has had many peaks and curves. We’ve climbed many mountains and continue to do so on a daily basis. Ellie has received daily speech, language, hearing and sign therapy since she was nine months old. She is doing great but it has been a long road. She is a pretty amazing child with a spirit of determination. Her compassion and zest for life will always be a wonderful asset as she learns to live with her hearing impairment. Of course, watching Michelle not let her disability get in her way or define her will be a lesson both our girls will hopefully learn from.

Today, most people outside our family can’t even tell that Michelle and Ellie are deaf.  Their implants work that well.

While every family is unique, I think it’s worth it to find out as early as you can if you or your child is eligible for the implant.  The longer you go with hearing loss, the harder it is to catch up.

In short, I would tell others to get tested, get second opinions, but also trust your instincts.  You know yourself or your child better than anyone; better than any doctor or any result from a test.

As for Lucy and me, I think we’re taking life’s little challenges in stride.  Lucy and I have a great sense humor. We have to. It can get frustrating living with two hearing impaired people and when it does we have learned to giggle with each other. When you live with a person with a hearing loss it profoundly affects the entire family…not just the person who can’t hear.

Watching Ellie and Michelle has definitely given Lucy and me some distinct perspectives on life. Lessons that can’t be taught in a classroom or learned from a book. Like Ellie, Lucy is an amazing person all in her own right and as long as we keep a whole lot of implant batteries on hand, everyone manages just fine.

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Resources What is a cochlear implant?  What does insurance typically cover?  What are the ongoing costs?  Connect to our Resources page to view the only online clearinghouse of up-to-date cochlear implant information. CLICK HERE FOR RESOURCES
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