Wrenshall family shares experience raising a child with cochlear implants

CLOQUET — Katie and Jon Beck started a unique journey when their second daughter, Lilly, was born deaf in 2019.

The Wrenshall family found out after Lilly, who is now 2 years old, had failed a newborn screening test, but at first thought it could just be fluid in her ears.

"We went back to Essentia and retested, and found out she was deaf in both ears," Katie said.

Katie and Jon had the opportunity to present their story, which they titled "Journey with Lilly," at the Cloquet Public Library on Wednesday, May 11.

They shared what their family went through, provided some American Sign Language activities and even read "Brown Bear, Brown Bear, What Do You See?" with sign language accompaniments.

Katie said the family's experience was nerve wracking in the beginning and resulted in over 200 appointments—a good chunk of them took place during the COVID-19 pandemic, which made hospital visits even more difficult.

Cochlear implants were a option for Lilly, but they had to go through steps before completing the surgery, including seeing if hearing aids would work.

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"If you don't try hearing aids, insurance companies won't cover expensive operations because there might be a more cost-effective solution," Jon said.

After the initial tests, doctors recommended that Lilly get the implants, which have been extremely helpful. Jon said the implants have been a success.

"She is able to hear everything in the room that she should hear now," he said.

A misconception the Beck's brought up was that after the surgery, it wasn't as if Lilly could immediately hear, but she had to have the area heal and then slowly move forward so the new sound didn't shock her.

After having the implants in since she was 11 months old, Lilly has caught up to the level of her peers in speaking and talking, which her parents are extremely happy about.

"She has just excelled and picked everything up with language and listening," Jon said.

Learning American Sign Language to communicate with Lilly was very important as she didn't have access to sound for 11 months and they didn't know if the implants would work or not.

"We had to build our foundation on ASL," Katie said.

While they don't use it as much now, they still use it when Lilly is getting ready for bed or in the bath.

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One of the interesting aspects of the implants is that they have Bluetooth connectability.

Katie said this allows them to connect audio to Lilly's implants and stream things "directly into her head."

When Lilly requests to watch "Encanto" again, she is able to watch it without any audio coming out, something that can be beneficial to her parents.

"I don't have to listen to it—I can beam it right to her head," Katie joked.

One of the other beneficial aspects to having Bluetooth connectivity is that when she starts going to school, teacher's with microphones will be able to speak directly to her—regardless of where she is in the room—and she'll be able to hear them clearly.

Stella, Lilly's 5-year-old sister, has been enthusiastic and helpful with every aspect of the journey, according to Katie.

"Stella had to go through a lot as a big sister," she said. "She is always willing to help."

Katie said she had some "mom guilt" when taking Lilly to her appointments as she couldn't bring Stella with her. But Stella has continued to help with things like putting batteries into the implants in the morning, and Katie said it has been neat to see her on her own journey of growth too.

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Katie offered other parents going through similar experiences advice on how they could approach it with their kids.

"It is never a race—it's always a journey, no matter if it is a slow one or a fast one," she said. "Try to find the joy in there, even if it is a little joy each day."

Keiko Satomi, Cloquet Public Library's children's librarian, organized the event.

"That is the great part of my job, to serve and connect the communities together," she said.

Satomi said the Becks are regular patrons of the library, which is how she met Lilly at the library's story time.

Lilly has even given Satomi a gift: A name card of how to spell out her name in ASL.

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Satomi is hopeful to not only have the Becks back again, but also to have other parents share their own unique stories.

"There are so many things I would like to learn more about," she said.

1/3:  Jon, from left, Stella, Lilly and Katie Beck, all of Wrenshall, give a presentation about children with cochlear implants on Wednesday, May 11, 2022, at the Cloquet Public Library. Lilly, who is two and a half years old, uses cochlear implants.

2/3: Eleanor Ojanen, from left, Stella Beck and Katie Beck demonstrate the use of American Sign Language to spell out Eleanor’s first name during a presentation about children with cochlear implants on Wednesday, May 11, 2022, at the Cloquet Public Library.

3/3: Lilly, left, 2, and her sister Stella Beck, 5, seen during a presentation about children with cochlear implants on Wednesday, May 11, 2022, at the Cloquet Public Library.