A bittersweet EA/TEF symphony. That’s how guest blogger Janae Copeland describes the life of her daughter who was born with EA/TEF in 2010. In today’s post, Janae explains how she learned to read the music of her daughter’s life. What a fitting and rousing finale to EA/TEF Awareness Month, 2018.

All my life, I trained for sound. Specifically, I was trained to make musical sounds and improve the musical sounds of others. Until that day in August, I never dreamed I would be thrust into a small pod of a room, surrounded by sounds that could no longer be shaped by my words or gestures, but that were completely at the command of my daughter’s tiny body and its ability to function despite the many EA/TEF challenges she faced, minute-by-minute.

The first time I saw her, about 48 hours after she had been rolled out of the NICU in our local hospital to take her first life-saving flight, she was fully sedated, a few hours out of surgery. My only instinct was to sing, standing on tiptoes to lean over the plastic bedside. Was it to comfort her or me? I’m still not sure. But the semi-tonal melodies produced by the monitors invaded the space and provided an accompaniment that mirrored the cacophony that would come to define the next few weeks.

As the hours passed in the pod, the lack of rhythmic synchronicity became my nemesis. I longed for a strong pulse that each bing and beep would willingly follow, but finally began to accept that the polyrhythms were reminiscent of the elite drumming ensembles of West Africa. They could be enjoyed, or at least appreciated, even if they never settled into my Western ear.

Perhaps the most humbling part was the realization that I, the teacher, had become student again, with an entirely new vocabulary to learn. I figured if I had once learned the meanings of sforzando and Sprechstimme, I could begin to understand tracheomalacia and brachycardia. Unfortunately, my teachers weren’t even aware of their roles, so the instruction was quick, mumbly, and often happened a little after 5 am, when my brain was barely even aware of its surroundings. Failure was not an option, so Google was my textbook, other parents led my online tutoring sessions. Using available resources meant standing close enough to the door during rounds to hear the “real talk” before the medical students came in to present their monologues, obviously intended more as an audition for the longer coats than as information for us.

Now, 6 ½ years later, I reflect and realize that every day in the hospital was a rehearsal of the bittersweet EA/TEF symphony that is our life. These days, we usually agree on a moderate tempo, plugging through each of our countermelodies with near-mastery. There are moments of difficulty, where a new challenge presents itself, and we go back into rehearsal mode. Sometimes it’s an all-night coughing sessions, or a few hours of wondering if there’s a stuckie causing her discomfort and difficulty breathing. Or, like this past weekend, we endure a 3-night stay in the PICU for pneumonia, after catching an illness that, to her classmates and sister, was just a cold.

Even so, we couldn’t be more grateful for this composition of ours. Each challenge simply serves to make this bittersweet EA/TEF symphony more beautiful and interesting. My daily prayer is that I will always remember to stop and listen to the beauty around me and never take one measure for granted!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page