By Dave Andrusko
Editor’s note. Today concludes Down Syndrome Awareness Month, a time, according to The Jerome Lejeune Foundation, when “we applaud caregivers, families, and medical professionals — but most of all, we applaud all the wonderful people with Down syndrome.” All during October we’ve been running many new and previously published stories. This one first ran in 2012 and may, in fact, be my all-time favorite post.
Alas, the video is no longer available.
Oh, gosh, this is clearly a three-hanky story. Hats off to Kristi Burton Brown whose blog alerted me to the story “Perfect” which aired October 1 on ESPN’s award-winning primetime sports magazine “E:60.”
The segment is up on YouTube and the little summary at the bottom is both touching and wonderfully accurate:
“There was a time when Heath White chased perfection. E:60’s Tom Rinaldi tells the story of a how the birth of a girl with Down syndrome led to the re-birth of a man who thought he had everything, until he discovered the joy of pushing Paisley.”
The narrative threat that binds this 15-minute story together is the letter Heath wrote to his daughter, Paisley, now five, that he had not read to her. The letter (which he began when Paisley was 18 months old) is, as he tells Rinaldi at the end,
“just my way of repenting. Chances are she would never have known the way I felt before she was born. That could have been my dirty secret that I kept with me forever. But I didn’t want it to be a secret; I wanted her to know that she was everything to me.”
By all appearances Heath and Jennifer White were/are the All-American couple. He had known her since middle-school and asked Jennifer to marry him when he finished first in his pilot training class in the U.S. Air Force in front of the entire class. (Heath grew up thinking of himself as “Maverick” from the movie, “Top Gun.”)
He had known nothing but success—athletically, academically, in his choice of careers, and in marrying a woman of exceptional strength and character. She became pregnant and Rinaldi asked Jennifer what Heath would expect their first child to be: “Perfect, like he was,” she said tongue-in-cheek but with all sincerity.
And, sure enough, Pepper, their first child, born in 2005, continued that string of perfection. A year later Jennifer was again pregnant, only this time prenatal tests showed their girl would have Down syndrome.
Rinaldi asks Jennifer what was her fear? “That he would leave, that he would just run away,” she says between small sobs. “Worse than that I knew that he would probably want me to abort her, because I knew that his convictions on that were not as strong as mine.”
Heath confesses that he did everything he could to convince her to abort. Why?
His main concern was “what people would think of me”–“What weakness inside me caused that.” [In the letter he wrote afterward, he described his pride and self-absorption at the time: “I’m a winner with winner’s blood,” he wrote. Heath felt like he was getting “a broken baby” and all he could think was, “Why me?”]
He was not rude or ugly. “He was absent,” Jennifer said. “He just wasn’t emotionally there, at all.”
Through tears, Jennifer describes her husband as the man she loves “more than life itself.“ So “I had to think ‘what if?’ What if I aborted her, what if I got rid of her. And I remember a little voice in my head saying, ‘No way, it’s not happening. No way.’ I mean I contemplated it for maybe an hour. He did for months.”
When Paisley was born in March 2007, Heath told Rinaldi that his mom said to him that Paisley didn’t look like she really had Down syndrome. To which he responded that “she was lying. You could definitely tell she had Down syndrome.”
Given her husband’s attitude, the situation was not easy for Jennifer. She said, “It really felt like I’d lost a baby, even though I had one sitting right in front of me.” What changed this? “I think it was after she started feeding that I said, ‘she’s good, she’s perfect, we’re going to be fine.’”
Then, a few months later, one of those magical moments which changed her husband. Heath was playing with Paisley on the floor, tickling her, and she laughed and giggled and tried to push him away. “That’s when I realized she’s just like any other kid, she’s my kid.”
From that moment on, Heath was a new man, a fiercely protective dad. He told Rinaldi that he was happy that “Paisley had changed me.” That change came partially from an idea.
He looked for ways to show the world his daughter. He settled on running marathons together (he had been a competitive runner for years until he stopped during the time Jennifer was carrying Paisley). Why?
“To let everybody see I was proud of her,” Heath said. Nobody knew how he had felt before she was born “and if I can keep one family, one person from having to live with the guilt in almost making the mistake that I almost made is going to be worth the pain that Paisley will feel later in life knowing the way I felt.”
They ran all kinds of marathons together. Their last one was earlier this year. When they finished they had completed 321 miles together, “a number with a deeper meeting,” Rinaldi said. Heath explained, “Down syndrome is the 3rd replication of the 21st chromosome.”
What is your fear, Heath is asked. Of “one day somebody calling her ‘retarded,’ somebody using that word in her presence, or making fun of her because she’s different and having to explain to her about society and having to build her self-esteem back up and letting her know how much I love her.” Which is one reason he began to write the Letter.
In a remarkable statement that blends confession and pride in his daughter, Heath explains to Rinaldi, “Everything I’ve done, everything I’ve tried to accomplish, it was never going to be perfect. But my love for Paisley is perfect. I’m always going to be there to make sure she makes it to the finish line.”
The program ends with an excerpt from the Letter that speaks in a way that only a dad can fully appreciate:
“Before you were born I only worried about how your disability reflected on me. Now there is no better mirror in the world. You’re my light in the dark, and it’s a privilege to be your dad. Love always, daddy.”