Cochlear Implant Awareness Foundation - CIAF

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The decision to receive a cochlear implant impacts the entire family, not just the individual recipient. Other implant recipient stories coming soon!

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This is the experience of the Tjelmeland family, told first in the words of Michelle. Her husband, Joel, follows with his own perspective.

Michelle’s Story

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Earlier this year, I received a phone call from a friend. It had been a long day and I was exhausted, completely unprepared for the words that would come next.

Me? An inspirational deaf person? My friend’s voice was shrill with excitement. She had nominated me for a national award – Oticon’s 2005 Focus on People Competition – and I had won. Inspirational Deaf Person of the Year.

I began to cry. I suppose they were tears of both joy and sorrow. Only 4 ½ short years ago, I would not have been able to hear the wonderful news.

I was born hearing, but began experiencing progressive hearing loss during childhood. It went completely undetected until I was almost 20 years old. Because it happened so slowly, I must have naturally compensated. I didn’t realize how bad my hearing had become.

In college, I began to struggle. In a lecture hall with 450 other students, it became impossible for me to hear my professor. Papers shuffling, people talking around me… it was a challenge. I soon realized that if I wanted to continue my education, I would have to seek help. Doctors at Shea Clinic in Tennessee prescribed my first set of hearing aids. Everything was fine for a while.

It was during adulthood and amidst a difficult pregnancy that deafness set in rapidly. Within just a few months, I could no longer hear or communicate with anyone in my life. I could no longer hear music, talk to my parents or friends on the phone, or hear my husband tell me he loved me.

Ultimately, my pregnancy required 24 weeks of bed rest and 9 hospital stays. I imagine much of the pregnancy-related distress was due to the emotional impact of going deaf. Our daughter, Ellie, was born two months premature and spent the first two weeks of her life in the special care nursery.

It was a hard time in our lives. We were first-time parents and were quickly learning that Baby Ellie didn’t come with a manual. Upon our arrival home, I remember holding Ellie and crying because I couldn’t hear her coo’s of contentment or her cries of hunger. I didn’t know at the time that she couldn’t hear me either.

Ellie had been born profoundly deaf, but we didn’t officially find out until she was 9 months old. That was after nearly 50 visits to doctors all over the United States. My maternal instincts had told me that something was wrong from the very beginning, but no one has ever been able to tell us why I lost my hearing or why our daughter was born deaf. We have no hearing loss in our family.

Like any new mother, I worried, but my concerns were magnified by all the questions I had running through my head about my baby’s deafness. Would Ellie ever make friends? Would she be able to talk? Would she hear us tell her that we loved her? Would she ever learn to say the ABC’s or sing The Hokey Pokey? Because I had grown up hearing, I worried that Ellie would miss out on many of life’s opportunities.

When Ellie turned a year old, we found out she was a candidate for the Cochlear implant. She was implanted at 17 months old – one of the youngest children to be implanted at the time. The implant was a complete success but it has been a long, tiring road that has required years of speech and hearing therapy.

A month after Ellie was implanted, our second daughter Lucy was born. She is our little spitfire, with perfect hearing.

The next year, I received the cochlear implant, too. My hearing is not restored 100%, but the difference is amazing and I feel blessed.

The impact that the cochlear implant has had for my family cannot be conveyed in words. Doors have been opened for Ellie and me, as well as for millions of other hearing impaired individuals in this world.

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.