The words escape me, mixed with accusation and desperation. Even though this is my first baby, from the moment the delivering doctor places Emma into the crux of my arm, I instinctively know that something is different about her. Her stillness alerts me first. There is no shrill, offended cry that commonly marks a newborn’s initiation into the world. I have no way of knowing that there will be no audible cry from this little girl, now or ever.
Tiny, floppy, and greenish, Emma rests quietly in my embrace. “She doesn’t look like my husband or me,” I say to the delivering doctor. What I think is less acceptable, completely critical, and utterly ugly. As I cradle my baby, I think she looks sick—abnormal.
I had expected to see a balding, cherubic, old-man infant, with features that suggested some future version of what could evolve into my lips, my husband’s wispy hair, my father’s Jewish nose, my grandmother’s bluish-green eyes. I’d heard that newborns were notoriously funny looking; however, what I saw was entirely foreign. My daughter’s features, which the doctors would later call dysmorphic, included low set ears, wide set eyes, an almost non-existent nose bridge, unusually small lips, and a microcephalic head.
The days that followed brought genetic testing and endless waiting. My husband and I finally received news that confirmed our worst and unimagined fears. Emma was born with a rare genetic chromosomal abnormality. The abnormality was so rare that there was no one to compare to, and no way to gauge a possible prognosis for the future. She was truly one of a kind.
As soon as the doctors delivered the diagnosis, they went to work surgically correcting her. They created an opening in her belly and inserted a gastrointestinal tube to bypass mouth feedings, which put her at risk for aspiration. They made another opening, reaching from her bladder to the outside of her body, a vesicostomy, designed to treat recurrent UTIs.
My husband and I watched these barbaric but, ultimately, life-saving procedures. As mere children ourselves, we witnessed our fragile baby repeatedly opened up and put back together. I remembered the Russian wooden nesting doll called a matryoshka that I used to play with as a child in my grandmother’s home in Ukraine. The doll would break at its equator, revealing a smaller version of itself, until I reached the tiniest doll in the center. The smallest doll was whole. I wondered, were the doctors looking for my baby’s wholeness?
On one occasion, in the midst of the maelstrom of surgeries and recoveries and in search of a life raft to grip onto, we turned to a doctor for possible answers. Instead, the doctor delivered us a virtual death sentence. After we asked him about Emma’s prognosis for the future, he dispassionately replied, “Children with her genetic and medical issues don’t usually survive past their first birthdays.”
His words left us speechless and breathless, but not hopeless. I simply refused to accept it. After all, what could he know about how our Emma’s life would unravel? Wasn’t her condition so unprecedented that nobody could speak with any certainty about her future? I made a silent vow to Emma that day that I would do everything in my power—make it the sole purpose of my existence—to prove this doctor wrong.
Emma’s first birthday came and went, then her second and third. We celebrated each passing year with a declarative middle finger aimed in the direction of the doctor. By her eighteenth birthday, that fateful statement was but a mere dusty memory, bereft of its ability to hurt us.
As Emma grew and got stronger, she gifted us the privilege of watching her evolve from a survivor into a warrior. This little girl came into the world quietly, but she lived in it loudly, without having to make much noise. You may not have heard or seen her coming, but once she was near, she made her presence known.
Though nonverbal, she speaks in loud volumes with her body. She nods her head vigorously in acceptance or agreement. If she is less than happy with you, she pinches your thigh with such effort that her body shakes at the exertion of it. Her laugh is unarguably her most moving skill. It is silent, but it is tremendous. It is lung emptying and debilitating in its strength. When Emma laughs, her generous cheeks swallow her eyes, drool makes its appearance on her lips, and she folds in half like a marionette whose strings have been unexpectedly released.
Though Emma cannot walk independently, she has managed to get around: first by rolling like a log in the direction she wanted to go, and then by scooting on her bottom as she has gotten older. Not even the two hardwood steps that lead into our sunken living room can deter her. I often watch her from the couch as she positions herself perpendicular to the first step, closes her eyes in anticipation of the not-so-soft landing, then propels her body forward and down the steps in an act of naked determination.
What I admire most about Emma is her indifference to societal norms and dictates. She epitomizes the statement, “What other people think of me is none of my business.” She is immune to others’ judgments of her. She doesn’t worry if her outfit makes her look fat, whether or not her clothing matches, or what her teacher thinks of her refusal to participate in that day’s “vocational training” activities. She has no problem reaching for a passerby’s skirt as I push her down the street in her wheelchair, or any reservations about taking a fellow traveler’s hand in the elevator.
If you devote a minute of your time to her—a few kind words, a song, a smile—she will be your best friend. When I cry, she cries in shared empathy. Then she usually slaps me, as if to say, “Enough of that! There is no time for sadness or self-pity.” She is my wise, silent teacher—a profoundly deep and understanding soul. She keeps me grounded, while encouraging me to reach for the brightest stars.
When we tell Emma “No,” she laughs. I suspect, on an old-soul’s level, she understands that no outside force could stop or limit her more than her uncooperative body already does. Nothing and no one can impose on the joy of her existence.
Emma got her wings two years ago, soon before we would have celebrated her nineteenth birthday. She battled not merely to survive past her first birthday but to live life with all the deafening force, bravado, and fanfare that her tremendous spirit could will.
Emma’s greatest gift was showing us, by example, how to live life loudly, determinedly, and unapologetically. She imparted universal wisdom, not the least of which was to live beyond oneself, always pushing at the walls of the box and venturing out. Above all, she taught us that sometimes imperfectly wrapped packages hold precious gems, whose radiant brilliance can blind.
QUESTION: How do your children inspire you or make you look at the world in a different way?
CHALLENGE: Consider the question above and write a letter to your child about how they have inspired you and enriched your life. Share it with him or her.
Edited by Kimberly Price and Katie Carter.
Image provided by the author; graphics added by Anna Jenkins.