Embrace not knowing

The past owners of our home started a modest orchard on the well-sunned slope to the side of the porch. It was intimidating to acquire fruit trees this way, with little prior knowledge. One day I came home from errands to see the apricot tree heavy with fruit. I noticed a few branches were beginning to crack. I picked a fruit from the tree and tasted it. Warm and sweet. Probably ready. I happy-danced back to the house and recruited my oldest son to fill a basket with me; we worked quickly, picking well over a hundred fruit. We could see the thin branches almost thanking us as we relieved them of the heavy burden.

We ate apricots for days, shared with friends, and made our first batch of jam. The fruit covered every inch of counter space. They were small but sweet, nothing like the leathery kind you can buy for cheap. My youngest boy would pace the kitchen and porch with an apricot in each hand: “Mmm.”

After conquering our early-summer spoils, I researched what to do next with the tree: trim back the branches or leave the tree alone for now. I came across a key piece of information about stone fruit (cherries, peaches, plums, apricots). I’d missed it in the earlier days of caring for our adopted tree, a simple tidbit which would have yielded bigger and better fruit. I should have removed most of the fruit before it reached an inch in diameter, only leaving one fruit every six to eight inches. This thinning would have allowed the remaining fruit to grow bigger and not overwhelm the delicate branches.

I rummaged online for more information, and the screen might as well have taunted me: You didn’t KNOW that? How could you not know that? Everybody knows that.

It’s easy to tell a story like that and say, “Oh silly, stupid me.” As if the only explanation of not knowing something yet is being silly and stupid? It’s often a defense I rush to–after a simple discovery.

Somewhere along the way, the idea of not knowing became cause for great alarm, first in those around you: “You didn’t KNOW that?” and then eventually within yourself. It became a reason to hide until you could emerge all-knowing.

We need safe spaces to not know everything. Do you remember a time you freely admitted what you didn’t know? Maybe it was how to use punctuation or what ingredients are in milk or how an airplane flies. Let’s return to that simplicity and acceptance.

Our hearing loss journey

The doggie’s napping, Milo’s napping, and the older boys and dad are out on an adventure out of town (I tried not to say “BUH-BYE” too excitedly as they drove off). I’m excited for a quiet house to finally finish writing out more of our hearing loss journey. We just crossed the one-year mark of discovering Silas’s hearing loss, and I haven’t written the whole story in one place.

It’s starting to get real! Silas is scheduled to have surgery to receive his cochlear implant in only two weeks, and a few days ago we received the official approval letter from insurance. It’s been quite a process to get here: with only short bits of chaos and mostly a long wait and lots of questions in between.

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Silas was due for his four-year well-check back in April 2020, but his pediatrician was in high-demand for COVID-19, so we delayed his appointment until June and another doctor saw him. He completed a routine hearing screening and failed in his left ear—I remember tossing out a friendly joke about not being surprised if Silas had hearing loss. The doctor told me she’d refer us to an audiologist for a full hearing test, and it was probably just impacted wax. We thought nothing of it.

A couple weeks later, Silas had his audiologist appointment. I was nervous but tried to play it off—he’d had quite the experience with a few doctors the last year, between fracturing his wrist and later needing a blood draw and eventually anesthesia and a scope procedure for potential celiac disease. You could say he really didn’t like doctors at all—I prayed this could be a fun and enjoyable experience for him. He asked the audiologist right away if he would need a “poke” and she put him at ease—then they got right to playing!

Part of the test measured the response of Silas’s eardrum, and from an audiology course back in the day I knew right away his middle ear was responding normally—it wasn’t wax or fluid. Silas completed his test and the audiologist said she’d print the report and be back in with the results so we could discuss.

She returned to the room and recapped why we were there: Silas failed the hearing screening in his left ear and we came today to confirm 1) whether he had hearing loss and 2) in which part of his ear. She kept speaking, slowly, but I don’t remember the words—when I glanced down at the audiogram I knew immediately and my eyes filled with tears. He had sensorineural hearing loss, or permanent hearing loss originating in his inner ear. So many thoughts: how could I have missed this? How long had it been? Was it his high fever at two? His bike at three? He’d passed his newborn screening, but what if he’d already had a little hearing loss back then?

Our audiologist was clearly skilled at delivering this news, helping balance my need to ask all the questions and yet save some for later to give myself room to breathe. The oddly-encouraging part of it was her words: “This is big news for you, but it’s not news for Silas. This is his normal, and likely for a long time.” I’ve kept those words with me, and they’ve kept me hopeful and accountable to keep Silas in the center of his story. In fact, soon after we all knew, Silas casually said, “Yeah, this is my not-hearing ear!” or “This is the ear I can’t hear out of.”

After that day, our next goals were to set up Silas with his new “super-ear,” his behind-the-ear hearing aid. He picked “blue sparkles” for his ear-mold and within three months of discovering the loss, he had a cool new piece of equipment. He bonded with it right away and wanted to be involved in each part of its care, cleaning/putting away, changing batteries, etc.

Our other next steps were to start pursuing the “why,” mostly to inform us of our future options and whether we could predict his hearing would progress. We saw an eye doctor and ENT and ruled out a few possible causes such as syndromes, illness, etc. We knew an MRI was in our future (to check his anatomy and possible causes) but for now chose to prioritize settling into life with a hearing aid.

We enjoyed a few months with Silas’s new super-ear. I could tell a difference right away in his behavior, some of which I previously wrote off as typical four-year-old stuff, but he truly was missing out on so much in his environment. We switched the location of his car seat and even where he sat at the dinner table. We didn’t have many opportunities for practicing hearing in public/noisy spaces, because this was mid/later 2020 and life was still pretty simple otherwise.

As we crept up on Silas’s next check-in with our audiologist a few months later, he’d mentioned how he wanted his ear “turned up.” He’d said this several times by the doctor visit, so we chatted with the audiologist about giving him a boost. When he still his left ear was still “a bit quiet” even after the boost, we briefly spoke about whether his hearing loss had progressed. He was due for his next hearing test for a few months, but we thought it might a good idea to do it sooner.

We’d recently decided to move to Butte County and were set to close on our home within a month, so our audiologist was sympathetic of the timing and squeezed us in the very next day for another full hearing test! I sat with Silas in the testing booth and sensed he wasn’t picking up the same sounds he used to, even a few short months later. I can’t put words to the feeling…when you’re sitting right next to your child and you, the parent, hear every beep…while your child stares straight ahead waiting to hear something. I just felt the weight of it all in a different way that day.

Sure enough, we confirmed his hearing loss had progressed to a severe-profound level and we were now in “cochlear implant” territory. (With this much hearing loss, there’s only so much a volume boost can do before you lose quality of sound.) This was big news. In some ways it brought peace in that it was an answer… In another way it set us on a new track.

Our next steps were to gather opinions from ENTs and schedule an MRI to possibly find out the “why.” By this time, Josh and I were questioning our move: was this the worst time to pick up and move to a whole new city? We agonized over it for a while but decided to move forward and get as many appointments in the Bay Area as we could before moving to a smaller town.

The first other opinion we received was that there was nothing we could do for Silas’s amount of loss, and, contrary to what the audiologist told us, he would NOT be a candidate for a cochlear implant, because he still had one “good” ear and implants were only for bilateral hearing loss. We received the information graciously but quickly scheduled for a second opinion within the same office, and this doctor was so comforting and encouraging. He pointed us to newer research about kids with unilateral hearing loss and cochlear implants and spoke in a hopeful and confident tone. We first needed to rule out any problems with Silas’s inner-ear anatomy, so we scheduled our MRI just in time…DAYS before our move out of the area.

His MRI was successful and scans showed he would be a perfect candidate for an implant. This was great news, and from there we’d start the candidacy process with another hospital.

So…as we got settled into our new place, Silas and I took periodic trips to San Francisco to start the candidacy process for a cochlear implant. This involved 2-3 hours of driving each way for another full hearing test and speech-language eval appointments, meeting our doctor(s) and getting to know his team, and asking lots of questions. Those long days were sacred days. Silas and I would leave the house about 4:45 AM and I’d cross the Bay Bridge right around sunrise. I’ll always remember that first drive to a place I’d never been before, at a vulnerable hour of the day, with a cute, brave boy in the backseat asking for snacks and another activity. I looked forward to these appointment days and of course never slept well the night before. We always arrived home quite tired, though, and it’d take us several days to get back into the swing.

Silas’s hearing tests were enlightening to me: even WITH his hearing aid in, he was still only picking up about 40% of speech sounds in his left ear! He guessed a lot of words, too, and I could really see how he’d learned to adapt. Kids with unilateral loss are in a class of their own, because while they can “pass” as hearing in quieter environments, in more noisy environments they have a really hard time connecting with others and catching distant moments and conversations. A common scenario at home is when we’re all chatting with each other and Toby will say something to Milo…Silas will ask, “What?” and Toby responds, “I was talking to Milo,” as if it doesn’t matter that Silas couldn’t hear. But Josh and I can! It’s those little incidental moments of family culture that Silas can miss. Safety is also a concern—he misses localization cues and can’t always tell WHERE a sound is coming from, a huge necessity when you’re riding a bike or driving a car. There’s a reason we have two ears.

After months of establishing Silas’s baseline and how he could possibly benefit from a cochlear implant, we’re now two weeks out from surgery. We’re gearing up for the long road of Silas learning to hear again. I’m so curious what it will sound like to him. Our hope is that his brain figures out how splice together his two different modes of hearing into one cohesive sound.

More updates to come. For now, enjoy this video of Silas hearing through his super-ear for the first time.