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Mom 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. 

 

Today when I picked up Oliver from daycare, the woman who watches him told me she’s noticed he’s been saying a lot more words, and how he gets so excited when his communication is understood by her. It always amazes me when someone else points out his progress, because it’s a little reminder that everyone wants to advocate and help him to be his best. Tonight before bed, I had him pick out a book and he chose ‘Leo gets hearing aids’ which we were graciously given by @phonak. Next week officially marks two years since the start of Oliver’s hearing journey; he was only 4 months old when he was measured for his first pair of ear molds. I was so fearful for his future back then, but now I’m confident that nothing will ever hold him back. #hearinglosswontstopme

A post shared by macey (@oliverplusme) on Apr 19, 2018 at 7:21pm PDT

 

“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

morgansnook
Morgan Snook is a writer from the Pennsylvania Wilds region. She enjoys being outdoors with her husband and two beautiful daughters.
Her youngest daughter has mild-to-moderate bilateral sensorineural hearing loss, probably genetic. She wears Phonak Sky hearing aids, which she got at three months old.

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