By Kara Downs
When Mike and I found out I was pregnant, we started to dream. We pictured all of the normal events of childhood: play dates, bike rides around the neighborhood, trips to the playground, Little League games. I was never an athlete (unless uncoordinated dancing to Bon Jovi cassettes is a sport), but Mike played football starting with the Pee-Wee League in Bloomington. Our dreams didn’t center on any specific sport; we just assumed our kids would play.
When Jack was born, our dreams narrowed to a laser focus. We watched the machines next to his bed, as if our intense concentration could keep the alarms from sounding. As the years went by, we maintained that focus, driven by an almost physical certainty that if we relaxed, Jack would slip away. We no longer allowed ourselves to dream about “normal” activities for our son. Our dreams were now much more specific: that he recognizes the people who love him, that he finds joy, that he is not in pain. This is enough, we told ourselves. We don’t need those other things.
Something happened a couple of years ago, though. We started to relax. Our laser focus expanded, and our dreams grew bigger as well. Yes, they are different than before. Jack will never score the winning touchdown. He will never be lifted on his teammates’ shoulders after sinking the winning basket. And yes, it hurts to give up those dreams (along with many others).
But we have learned, as so many other parents have learned, to find joy in what Jack can do. He can laugh himself to tears watching Mike do the “Daddy-Jack hop.” He can hold his little brother on his lap during long walks. And, thanks to the Tom Jones’ Challenger League, he can play baseball. Those dreams of Jack’s first baseball uniform, the whole family coming out to cheer, eating popcorn as we watch our oldest son “run” the bases . . . they came true last year. And Charlie was jealous that his older brother got to do something he couldn’t. And we didn’t once think of what we had lost.
Charlie and I picked up Jack’s uniform last week. He’s on the Coca-Cola team this year, and I think their chances are pretty good. Our family will be in the stands, cheering him on, surrounded by many other families of many other children who are, for at least a couple of hours, living the dream.
Kara Downs is an English teacher at Centennial High School. She lives in Champaign with her husband, Mike, an artist and writer, and her two sons. Jack, was born three months early. His prematurity caused bleeding in his brain, leading to cerebral palsy and hydrocephalus. Jack is a bilateral quadriplegic, unable to sit or stand unassisted. He is also nonverbal. Jack had a twin sister, Bridget, who survived for 18 days. He also has a 3-year-old brother, Charlie.