How my daughter found her voice

Whenever I think of my 12-year old daughter’s voice, I think of the story of the Ugly Duckling.

Margaret’s loud, wailing cry was the first time I heard her voice when she entered this world. It was the most beautiful ugly sound I’d ever heard. After nine long months of one-sided communication in which I would talk and sing to my baby girl in utero, I finally heard her voice, loudly and clearly expressing what babies feel when they are yanked out of their garden of Eden: indignation!

In the days and weeks thereafter, like most babies, baby Margaret cried loudly and proudly. She was colicky, which didn’t help. It was a bit of shell shock for me at the time because I was used to getting my sleep. And while I could barely cope with the sleep deprivation, I loved that I was bonded to her cry in a way that only God knows how to orchestrate. No matter where we were, my ears could instantly cut across all the ambient noises, however loud, and immediately identify hers. It was bionic hearing customized for me and my daughter.

When Margaret was around 10 months old, her sweet little voice started getting raspy and she started to cry without sound. At first it was funny. She looked like an actor in a silent movie. Until we were at a friend’s house for a playdate. She was in the backyard with her playmates crying because the slider was shut and she was afraid of the dog. The only reason I was alerted to her was because she was pressed up against the sliding glass door banging on it. Helicopter parent nobody has ever accused me of being, even back then.

The next day, I took her to her to the doctor to check it out. Her pediatrician had two small children of her own, and after a quick physical check, reassured me that Margaret was absolutely fine and chalked it up to an underdeveloped larynx. Her rationale? Her son had the same thing happen so she recognized the symptoms. Very scientific.

By the time Margaret turned one, we could hear her breathing loudly during the day and even louder when she slept. Even with the television on down the hall, it was like an old man was snoring in your ear. I naively kept telling myself that her pediatrician said it was fine so it must be fine. But it was far from fine.

At 12 ½ months, when she sounded like she was gasping for her last breath every time she breathed, we demanded a referral to a specialist. The pediatric ENT surgeon took one look at her and scheduled surgery immediately. It turns out that she didn’t have an underdeveloped larynx; she had laryngeal HPV and an invasive tumor had formed in her air passage that needed to be removed if we wanted her to be able to breathe at all in the future. And yes, we did like the idea of her breathing (still do in fact).

I was a hot mess during her surgery at Children’s Hospital of Orange County (CHOC). The surgeon had anticipated it taking no longer than a half hour; however, as with many operations, it took much longer due to some complications. Apparently, the tumor had almost completely enveloped the larynx leaving a teeny space to breathe which was closing  like quick sand.

This is a picture from Margaret’s surgery.

margarets-larynx

After her surgery, hearing her laugh, speak, and even cry was sublime. I realized how much I’d gotten used to her laughing and crying without sound and I was mad at myself for ever lamenting having to wake up because of her crying those first few months. I made a pact with myself that I would never take her voice for granted again. Even if it meant sleep deprivation because she was up crying multiple times per night.

We weren’t out of the woods though. The majority of children who have laryngeal HPV have surgeries multiple times per year, and some as much as weekly, because the pesky tumors grow back quickly until around 11 or 12 when that area matures we were told. We braced ourselves for the worst and asked St. Blasé, Patron Saint of throat-related illnesses (whose feast day we recently celebrated on Feb 3), to pray for us that Margaret’s larynx would heal once and for all despite the gloomy outlook. (Amid all the bad rap we Catholics get, one of the perks of being Catholic is that there’s a saint for virtually everything.) Margaret ended up having two subsequent surgeries. Her last was at age two. We beat the odds, statistically speaking.

This is Margaret at age 2 before her last surgery:

A decade later, Margaret’s voice has literally become music to my ears. She’s recently begun to develop it in a way that is in sharp contrast from those bleak days at CHOC. Under the instruction of a seasoned music professor at UC Irvine who taught me in college, Margaret is learning what a powerful instrument her voice actually is. Yes, my daughter’s ugly duckling of a voice is turning into that of a singing swan before our very ears.

Here’s a few bars of the song Margaret is working on now.


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