- Posted January 14, 2014 by
New York, New York
This iReport is part of an assignment:
First Person: Your essays
To the moon
“To The Moon”
By Bret Bowerman
“You’ve probably seen them bagging groceries,” said the geneticist attempting to explain to my wife and me that our one-day old daughter, Ellie, had Down syndrome and what that meant for her future. Her age was measured only in hours and already, expectations for Ellie’s potential had been capped.
Just hours earlier we were sitting in a recovery room holding Ellie, hosting visitors, emailing pictures along with requisite weight and length statistics and basking in the afterglow of a seamless delivery and the addition of a beautiful, healthy daughter. Then visiting hours ended, our guests were ushered away and Ellie was carted off to the “well baby” nursery for a routine examination by an attending pediatrician. We exhaled and exchanged a silent smile. A brief window of unmitigated joy.
I recall our debate over which take-out food to order for dinner because “hospital cafeteria food would just not do justice to the occasion.” The trivial nature of that conversation underscores our blissful ignorance to the commotion that surrounded our daughter in a brightly lit exam room down the hall. We did not know our calm would soon break.
As we would learn, Ellie had been relocated to the hospital’s neonatal intensive care unit (NICU) because of a heart condition suspected by the pediatrician. Her prognosis was encouraging but her immediate condition was tenuous, needing supplemental oxygen and medication to help her heart and lungs work properly. And, we were told, a geneticist would visit us to discuss an additional diagnosis.
That “additional diagnosis” was hardly the afterthought it sounded at the time. Down syndrome, also known as trisomy-21, is a chromosomal condition caused by the presence of a third copy of the 21st chromosome. Down syndrome is the most common chromosome abnormality, affecting more than 250,000 Americans and is associated with delayed cognitive ability and physical growth.
For three weeks, NICU angels cared for Ellie while my wife and I relied on a chorus of beeping monitors and exhaustion to dull the potent cocktail of shock, grief and fear that we struggled to stomach. And it would be dishonest if I didn’t admit to secretly hoping that it was all just a bad dream. But instead of awaking to relief, each morning was greeted with a pounding hangover of guilt for wishing that Ellie was any different than the miracle she was destined to be.
We coped with the stress of her heart complication and began to accept the challenges associated with Down syndrome that lay ahead. But the visual painted by the geneticist of Ellie as an adult, wearing a name tag and struggling to load a milk carton into a grocery bag, was etched in our minds. That description of Ellie’s diminished outlook, delivered as a foregone conclusion, was difficult to accept. Her promise, stolen. It was an injustice that took time to fully appreciate and gnaws at me even today.
Soon, Ellie’s doctors said she was ready to head home. And Ellie’s 15 month old brother was ready to play with his little sister. If only my wife and I were as ready to face our new reality. Those once seemingly daunting tasks of learning how to change a messy diaper or install a car seat took a back-seat to the new challenge of learning how to change an oxygen tank and install a feeding tube.
Fortunately, those skills were fleeting as Ellie’s heart fully recovered ahead of expectations. On her three-month birthday, she no longer needed oxygen so we untethered her from the tank and shed it like the Space Shuttle releasing an empty fuel tank after launch. Free from life’s initial gravity, Ellie was on her way.
Ellie has tackled life head on, making friends and enjoying childhood while enduring endless hours of physical, occupational and speech therapies to track milestones that come naturally for her older brother. To borrow a sports analogy, Ellie has braved “two-a-days” her entire life, showing up everyday, on time and ready to play. Never have I been more proud than witnessing Ellie walk for the first time. Knees wobbly and body trembling, she gave the Heisman to the outstretched arms reaching to support her while shooting a look that signaled, “I’ve got this.”
In the nearly five years since Ellie’s birth, we’ve experienced vast misunderstandings about the potential for individuals with Down syndrome. Too often, people look at Ellie and see ‘Disability.’ They see ‘Can’t.’ Even highly educated clinicians are not immune to misconception, electing to chart her against diminished benchmarks of success and suggest that Ellie should settle for less because “that’s just the way most kids with ‘Downs’ are.”
And yet, we’ve met adults with Down syndrome who can check the box on being a successful student, accomplished athlete, productive employee, prom king or queen, or husband or wife. And while scientific breakthroughs and novel therapies should further advance the potential of Ellie’s generation in the long-term, her daily accomplishments demand that we discount her disadvantages now. They demand that we focus on her abilities and expect more from her.
The contradiction between Ellie’s accomplishments and the geneticist’s misguided projection has shaped how we parent all three of our children (Ellie now also has a younger brother). We believe that children, whether they have Down syndrome or not, tend to perform to the level of expectations placed upon them. Expectations are often misconstrued as setting a floor on performance. Rather, expectations typically serve as a ceiling, so we’ve learned the trick is to set high expectations balanced with reassurances that it is okay to fail. And the only true failure is not testing the boundaries of our capabilities, wherever that may be.
From early on, we’ve educated Ellie’s brothers about Down syndrome and what that means for her – “Ellie can do everything you can do; it just may take her longer or require extra help; but she’ll get there eventually.” Her older brother, then 3, retorted, “Can she go to the Moon?” “Yes,” we responded. “Maybe someday she can go to the Moon.”
We’ve tried to instill in our children a belief that “if you put your mind to something, try your hardest, and never give up, then you can do almost anything.” And we hope that message and our belief in them will one day translate to an inalienable belief in themselves.
Of course, it’s important to recognize challenges and provide resources to address them. It’s true, Ellie needs support - and lots of it. But, too often, people focus on her disadvantages and lose sight of her strengths. Even school administrators try to classify her, listing her deficits, setting expectations low and building a case to separate her from her typically developing peers despite numerous studies that would suggest including her with her peers is mutually beneficial. But pigeonholing her is the path of least resistance. Low expectations are, after all, the easiest to meet.
The people closest to Ellie know the truth. They know that she braves hours of therapies every day, that she's worth the extra effort and capable of much more than what most expect of her. That they shouldn’t be fooled by her infectious smile, capable of lighting up a room, because behind that cute façade is a fiercely determined girl. Ellie proves that every Saturday during her rock climbing class. Sure, she is intimidated by the 30 foot walls, struggles with the climb and rarely makes it all the way to the top. But after a brief break, she’ll look at me and say, “Again, Daddy.”
And, perhaps, equally important, the people closest to Ellie also know she is just like most of the four year old girls in her pre-school class. She is a princess at heart, loves to host play-dates and go swimming at the pool. She enjoys playing catch with her brothers but occasionally catches flak for teasing them. She’s more alike than different.
Recently, we asked Ellie’s older brother, “Do you remember what it means for Ellie to have Down syndrome?” “Yes,” he answered, “It means she can go to the Moon. But it’s not fair, why does Ellie get the extra chrome,?” referring to her 47th chromosome. Priceless. If only our society could look through that same lens of ‘advantage,’ and focus on abilities rather than disabilities.
A prenatal screen pegged the odds of Ellie having Down syndrome at less than one in 3,000, so we like to think Ellie has defied expectations from the very beginning. And we trust she will continue to do so from here on out. Though, we hope one day, she won’t have to. We hope one day our expectations of her, as a society, are more limitless than they are limited.
Ellie has taught us many lessons about parental love, but perhaps the most important of which is not letting societal expectations dictate all that a child can be. As we enter the New Year, we tend to make lots of resolutions – most of which are forgotten long before February. I’m hoping Ellie’s story can help us make a more lasting resolution to, together, recalibrate our societal expectations. Let’s recognize the disadvantage, but not overcompensate for it by setting the bar too low. Let’s, for this new year and all that follow after, see the ‘Can’ in those children affected by Down syndrome, not the ‘Can’t.’ In fact, let’s do that for all our children – extra “chrome” or not.
And, as for Ellie, she’ll see you on the Moon…