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April 27, 2018Mom finds hearing loss support for her son on Instagram
Having a child with a hearing loss sometimes can feel isolating but mom Macey Kibbey has found kindred community through Instagram.
The hearing loss journey for Macey’s son Oliver began when his left ear failed the newborn hearing screen. A repeat test when he was one day old showed opposite results. Oliver was then referred to a specialist and diagnosed with a mild bilateral sensorineural hearing loss at three months old.
“When you’re pregnant, you don’t anticipate something so small yet so life-changing,” Macey says.
The beginning of Oliver’s hearing journey
In the early months of her son’s hearing journey, Macey was angry and frustrated, with more questions than answers.
“It felt like a bad dream I wanted to wake up from,” she says.
Her family mirrored her reactions. They supported, however, Macey felt on any given day.
“They leaned in support of whatever I was feeling. If I thought the tests were wrong, so did they,” she says.
Macey doesn’t know the exact cause of Oliver’s hearing loss but suspects it is genetic.
“We learned after answering a series of questions post-diagnosis that both his dad and I have hearing loss in our families,” Macey says. “It’s something we would never have considered would be inherited but with it being on both sides we assume Oliver carries a gene that resulted in his hearing loss.”
Read more: Community Spotlight: Grandson and grandpa sport matching hearing aids
Experiencing a major attitude change
When her son received Phonak Sky Q hearing aids at five months old, she shifted her attitude.
“I realized if I didn’t want others to feel sorry for Oliver, I needed to stop feeling sorry for him myself,” Macey says.
“I realized if I didn’t want others to feel sorry for Oliver, I needed to stop feeling sorry for him myself.”
She searched Instagram for hashtags like #babieswithhearingloss, #deafkidsrock, and #phonak. She saw parents embracing their child’s hearing loss with pride.
“It was an instant sense of relief that I’m not alone,” she says.
As Macey began embracing her son’s hearing loss, Oliver showed progress with adjusting to his hearing aids.
“At first it was a struggle to get him to sit still while putting the hearing aids in and to get him to actually keep them in,” Macey says. “Now first thing in the morning, he points to his ears and asks, ‘Ears?’ He knows they help him.”
Macey’s advice for moms beginning this journey is to connect with others who have gone through similar challenges.
“If you’re not sure what’s best, ask around. Ultimately whatever decision you make for your child is the right decision, because you are making it out of love,” Macey says.
Finally, she suggests keeping a positive attitude and avoiding the trap of self-pity.
“Don’t feel sorry for your child, or yourself. It’s something I did for a while. We have to tell ourselves, and believe it, that our children were chosen to be this way – unique and strong. We must be strong too.”
Keep up with Oliver’s hearing journey on Macey’s Instagram account!
