- Bret Bowerman's daughter, Ellie, is 4 and was born with Down syndrome
- He feels that lowered expectations unnecessarily limit children with disabilities
- "Too often, people look at Ellie and see 'disability.' They see 'can't,' " he writes
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"You've probably seen them bagging groceries," said the geneticist attempting to explain to my wife and me that our 1-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.
Earlier, we were sitting in a recovery room holding Ellie, hosting visitors, e-mailing 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 Ellie was carted off to the "well baby" nursery for a routine examination by a pediatrician. My wife and I exhaled and exchanged a silent smile. A brief window of unmitigated joy.
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 because of a heart condition suspected by the pediatrician. Her prognosis was encouraging, but her immediate condition was tenuous -- she needed 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.
What is Down syndrome?
Down syndrome is a chromosomal condition caused by the presence of a third copy of the 21st chromosome. It is the most common chromosomal condition, affecting more than 400,000 Americans, according to the National Down Syndrome Society. Down syndrome is associated with delayed cognitive ability and physical growth.
I secretly hoped that it was all just a bad dream. But instead of awaking to relief, each morning was greeted with pounding 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, from which she recovered by the time she was 3 months old, and we 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.
Ellie, now almost 5, 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. Ellie has braved "two-a-days" her entire life, showing up 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 reached to the outstretched arms there 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."
A long list of possible accomplishments
And yet, we've met adults with Down syndrome who can check boxes for 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. Th