[From the book I Am Potential by Patrick Henry Hughes with Patrick John Hughes and Bryant Stamford. Excerpted by arrangement with Da Capo Lifelong (www.dacapopress.com), a member of the Perseus Books Group. Copyright © 2008.]
Editor's Note: If you saw the Extreme Makeover: Home Edition episode that gave an accessible family home, bachelor apartment, and recording studio to a blind musician -- one who participated in college marching band with his wheelchair-pushing father -- you've already met Patrick Henry Hughes and his dad, Patrick John. In I Am Potential, father and son trade off on telling Patrick Henry's life story. There's plenty of inspiration throughout, but one passage that really struck me was this one written by Patrick John, about his wife's struggles and strength in dealing with rude comments, arrogant doctors, and low expectations. Haven't we all been there?
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Patricia was carrying a heavy load back then, and it was made even heavier by the thoughtless words or actions of others. People don't mean to insult, but it still stung when someone would refer to Patrick Henry as "that deformed baby." Or when they'd give him a pitiful look and ask a question like, "Can he even smile?" When asked this question, she responded as politely as she could, but I'm sure with a considerable strain in her voice. "Of course he can smile! He's blind, not paralyzed! And he's a very happy baby, and he smiles when he wants to, just like all babies."
And there are the people who mean well, those who have never had to deal with what we were facing. Still, they wanted to give Patricia all kinds of advice on situations they knew nothing about. She had to cope with some experts who talked down to her, who seemed to think that we had no common sense or ability to solve problems. Her role as a parent was to accept everything she was told as if it were gospel. Not all the experts were like that, of course, and some were compassionate and great.
I was unaware of how much of this type of treatment Patricia had experienced and how much it had built up inside her until she opened up about it one night. As she allowed a few tears to flow, I tried to comfort her. Then something unusual happened, unusual for her. She exploded. Something inside her had reached the boiling point, and it just had to come out. "You know what?" she cried. "I'm strong! I'm facing challenges people can't even imagine, and I'm coping. I am handling it. Maybe my son is not progressing like other children, and maybe he won't be a star athlete or a great brain surgeon someday. Maybe he'll never even reach the lofty perch of being average, like all the rest. But I'll tell you this ... he'll be everything he's able to be."
I remember how, after her outburst, I just stared at her. She had surprised me, and I loved it. I knew she was coping about as well as anyone could, but to see her this strong told me that nothing was going to keep any of us down for long.
Where did my wife get her incredible strength? Patricia's grandmother, "Mammaw," still alive and feisty at eighty-four, was her primary role model. Mammaw raised seven children -- four girls and three boys -- and did it mostly on her own. She owned a restaurant in the downtown Louisville area not far from where Patricia grew up. At the time, this area wasn't a great neighborhood. Mammaw fed most of the city's winos for years. Sometimes, they'd pay her, but mostly she fed them for free. She'd say, "Where else are they going to eat?" Mammaw had a big heart, but she was no pushover. These characteristics are what I see in my wife.
Patricia believes there's no time or place for self-pity. When life knocks you on the ground, you pick yourself up and move on, because no one else will do it for you. She's passed along this attitude to Patrick Henry, and it shows in just about everything he does.
Something that also helped us at that time was the realization that other parents of more typical children have their own particular problems and worries. They fret about how well their children are doing in school and what college they'll attend, or how well they're doing on the playing field. For us, it was becoming more apparent day by day that we were blessed by just concentrating on the most basic human elements -- simply loving our son without getting caught up in the trivial matters that preoccupy so many parents. What's more, we were able to see each small victory with Patrick Henry as another one of God's miracles.
