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Challenge: Kids with Special Needs

Why I Hated my Baby's Hearing Aids

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Here's the thing about writing a blog from my heart. I feel like have to share certain things. Even if I am not always proud of them, but because it's the truth.

When my son got his first set of hearing aids, at 3-months-old, I hated them. For more reasons than one.

And, unlike the videos of babies hearing for the first time you now see going viral, that wasn't our truth.

First, the whistle they produced during all waking hours (this was before feedback managers). I could not set him down anywhere or on anything without the dreaded whistle.

You see, before technology advanced, when hearing aid molds (the part in the ear to trap the sound in the ear) came into contact with anything (your chest, a car seat, a high chair, a bouncy seat, the floor when on your back), there was a dreaded whistle. And with my baby's particular hearing aids, when the whistle hummed, all other sounds were canceled out. Music, my voice, all of it, except the dreaded whistle.

With that reality came a tidal wave of guilt. Every time the dreaded whistle hummed, it meant my baby couldn't hear. Even if it was for a second, it filled me with angst. And it was a constant reminder of how important it was for him to have access to usable information from the hearing aids. Only, the dreaded whistle.

Then there were the earmolds. They needed to fit snugly to work correctly and try to combat the whistle (feedback). Only, have you ever noticed how quickly baby ears grow? I can tell you: crazy fast! Which meant weekly trips to the audiologist, located at the city-size hospital.

Timing was critical to the process of making new ones. Naps, feedings, diaper changes, all of it. Usually, it took ten minutes to find a parking spot and then I would nurse the baby in the car. Next, strap him into the stroller, jump on the elevator, and walk miles to the department.

Then, we'd hit the bathroom for one more fresh diaper change. Strolling some more, hoping he would fall asleep.

Hurry up. And wait.

Into the bright room with the big chair, we would go. One ear at a time. I held him on his side, while the audiologist worked to get the material for the new mold in the ear. My job was to keep him still and not let the gooey substance get knocked out. It had to set and harden for what seemed like an eternity. Most of the time, he cried. Or wiggled. Or both.

The timer would be set. Sometimes we would get lucky, and he would fall asleep.

Only then... The other ear. More crying. More wiggles.

As he got older, we came up with a system of double-dipping the molds so they would last longer. Once completed at the lab, it was another trip back to have them fitted to the hearing aids. I quickly learned how to adjust the finished molds, so we could have them sent directly to the house and avoid an extra trip to the clinic. #smallvictories

But there were more things about the hearing aids I hated. I felt jealousy towards moms with babies who didn't need them. As crazy as it might sound, I would be overcome with guilt as I stared and wondered, "What is that like?" A baby who didn't wear devices; it was something I didn't get to experience. He was my first, after all. This was the reality. My baby had hearing aids. Their babies did not.

Mainstream mothering looked so simple to me. Care-free. Whereas I felt overwhelming worry, responsibility. I imagined "those" moms shared none of the same feelings.

What's more, I cringed when a passerby would shift their eyes, zooming in on my baby's ears. No matter where we went, I would feel eyes focus on his ears. I didn't want people to look at the hearing aids. "Look at him!" I wanted to shout. See him. His chubby little cheeks; perfect pouty heart-shaped lips; deep blue eyes; fuzzy blond hair; cute new onesie; beautiful heart. ALL OF HIM.

But, I imagined people didn't see him. The stares felt like daggers. The smiles seemed fake. Or full of empathy. Or worse, pity.

In the beginning, I hated those hearing aids. The hearing tests, the dreaded whistle, the stares.

And in retrospect, I know those feelings stemmed from grief. Having a child born with hearing loss was not something we expected. And there was no time to prepare for it. We hit the ground running. There was so much to do, and I didn't get time to accept the situation wholeheartedly.

Instead, I just did what I had to do to advocate for my baby. Secretly, I wished it was different. Like the moms I imagined were mothering the easy way. I buried the guilt, the shame of feeling anything but blessed having an otherwise healthy baby.

Slowly, as I became versed in the journey of hearing loss, the cloud began to lift. I developed all the tricks and systems to manage the hearing aids, the dreaded whistle. A trusted team of experts who had my son's best interest in the forefront was created, and they reassured me it was going to be OK. For him. And for me. We worked together, and I felt less alone.

And those moms I thought were so worry-free; I realized also had struggles. Once I let down my guard, it became clear mothering, especially newborns, was hard for all of us. Hearing aids or not. I began to rely on the comfort of that sisterhood.

But even now, I sometimes find myself stuck in comparison. The what if's? And I have to remind myself this is our unique journey. And everyone has something, invisible or not. Though the dreaded whistle is long gone, and the hearing aids have been replaced by cochlear implants, challenges still and will always exist. But, so do magical moments.

So, I guess what I am trying to tell you, the mom who is struggling with comparisons, guilt or strolling your baby to and from the clinic, audiology appointments, speech therapy sessions. To the mom who feels all eyes on your baby's little ears...

It is OK. It is ok to feel all the feels, not just the blessed, grateful, loving ones. Your baby knows you love them and will advocate for them their entire life. You SEE them. All of them. Not just their ears.

The truth is, navigating through a fog takes time. To process. To manage. To accept. And, if you are lucky you will give yourself the grace to do so.

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