A few days after my first grandchild was born in 2016, her mother—my daughter Krystyna—told me that sweet baby Kena didn’t pass her hospital hearing tests. A week or so later, I accompanied Kena (pronounced “Kenna”) and Krystyna to the doctor for auditory brain stem response testing. We were told that Kena wasn’t hearing some sounds and would need a hearing aid.
After additional tests, Kena was diagnosed with having Mondini Dysplasia, a result of a developmental disruption during the seventh week of gestation. With this condition, the cochlea is not fully developed, and in Kena’s case it caused bilateral, mild to moderate sensorineural hearing loss.
At age 3 1/2 months Kena received her first hearing aid in her left ear and, surprisingly to us adults, she took to it pretty easily. By the time she was 18 months old she received another hearing aid for the other ear. She kept them in quite well except when she was tired, and then she’d pull them out herself, a sign she needed to unplug from all the noises.
Shortly after Kena turned 2, Krystyna took her to their local library for story time. As they were leaving, she noticed two children talking about Kena’s hearing aids. They weren’t being mean, they were just curious and most likely wondering why her ears were blinking. Although Kena hadn’t noticed anything, Krystyna was upset. She told me, “I can’t let other kids define who Kena is. She needs to be fierce no matter what she has to deal with!”
I had previously been looking online for children’s books featuring kids who wear hearing aids so Kena could relate to them, and was disappointed with what I had found. Oddly, few books featured children with hearing aids, but there were many with animals and hearing aids. I wanted Kena to see herself in a book, not a make-believe story of a bunny wearing devices.
That’s why I was inspired to write “Super Kena.” When I showed Kena the book cover she pointed to her hearing aids and said, “Just like me!” Getting the book written and published has been an enlightening journey, with many challenges and a big learning curve, but I am passionate about advocating for Kena and other children who have obstacles to face daily. For me, this has been a true labor of love.
At age 3, Kena is doing great, very feisty and yet sensitive to others. She’s a very visual learner and doesn’t forget the things she sees or where she sees them. She uses about 30 words in sign language and talks a lot. Her speech development is coming more slowly because we aren’t sure what sounds she can clearly hear. Kena receives speech therapy weekly, and we, her family, will continue to empower her to be the “fierce girl” she is determined to be!
“Super Kena” is a hardcover book for children ages 4 to 8. In the book, although Kena and her friends get teased at school for being different, a conversation with her mother sparks an idea about how she can help the rest of her class understand them better. It empowers this little girl to realize she’s a super hero by wearing hearing aids and helping other children find their own super powers to meet their own challenges, whether it’s diabetes, a food allergy, asthma, or a stutter. Together Kena and her super hero team make the world a better place as everyone realizes they are all more alike than different.
Becky Cymbaluk and her husband Dan live in northern Minnesota, where they farm small grains and sugar beets. Their adult children are Krystyna, a teacher; Anna, a pediatric endocrinologist; and Zach, who farms with them.