What Life Is Like When Father and Son Are Disabled
Clockwise from left: Tracy, 11 at the time, Jason, 9, and Jeff, 4, with dad Tim McGuire at a water park in the Wisconsin Dells. (All photos: Courtesy of Tim McGuire.)
“Some people even take them home.”
Those are some of the first words Tim McGuire and his wife, Jean, heard from a doctor in reference to their son, Jason, who was born with Down syndrome. But not leaving the hospital with their baby was unimaginable.
After all, just 30 years earlier, Tim’s parents were told the exact same thing by another doctor when he was born with arthrogryposis multiplex congenita (AMC), a condition that twisted his limbs and required him to undergo 13 surgeries before he turned 16 years old.
Jean holds Jason when he was about 6 months old.
“One of the ironies is that my parents were advised to put me in the state mental institution,” Tim tells Yahoo Parenting. “In 1949, the assumption was that if you were crippled, you were automatically mentally disabled. I’ve always wondered how many people are in such places wrongly.”
As Tim details in his recent book, poignantly titled “Some People Even Take Them Home,” both father and son have fought their entire lives to feel normal.
For Tim, that meant falling off his bike 100 times before finally learning to ride with the other children. It meant raising a family and chasing his kids around, even with a persistent and profound limp. It meant pursuing a career in journalism – despite having a right hand that he calls “merely decorative” – and eventually rising to become editor of the Minneapolis Star Tribune. (He retired in 2002 and is now a professor at Arizona State University.)
Jason at 3 months.
For Jason, the successes were more modest. Tim says that he, like his own parents, raised his children with high expectations, but acknowledges that there has always been an “anchor” attached to his dreams for Jason.
Jason’s quest for normalcy meant his mother teaching him to high-five other teenagers, rather than insisting on hugging them, which made them uncomfortable. It meant one time meeting Bill Clinton and, Tim says, charming the former president “right down to his boots.” And today, it means living in a group home, working, and being a valued member of his suburban Minneapolis community.
“The best way to conceive of Jason is as a 5-year-old who has been on this planet for 36 years,” says Tim. “So sometimes you get the experiences – TV, movies, trips, etc. – of a 36-year-old, but much of the time you get the emotional and cognitive abilities of a 5-year-old. You often don’t know what you’re going to get.”
A family photo from several years ago with Tracy, now, 37, Jason, now 36, and Jeff, 32 with mom and dad.
“The great thing about parenthood,” Tim adds, is that “each child is his or her own unique mound of challenge and goodness and fun. To try to approach every child the same way would just be ridiculous. They’re each their own clump of wonderfulness, and you just have to tap into it.”
Tim’s book is inspirational, but it doesn’t sugarcoat the challenges that come with physical and mental disabilities. He relates, for example, the frustrating, three-year process of toilet-training Jason. “That’s no picnic,” he says. “That could piss off Gandhi.”
In his book and in life, Tim resists easy clichés – bristling, for example, when people tell him that “God doesn’t give anyone more than they can handle.”
“God didn’t make my limbs crippled,” he says. “God didn’t give Jason Down Syndrome. Stuff happens. Everybody’s got challenges. You deal with them as they come.”
Tim and Jean with Jason at his high school graduation. He was awarded a certificate of appreciation but it was important to everyone that he “walk” and have a graduation party like the other kids.
Tim’s and Jason’s greatest shared challenge came last year with the cancer death of Tim’s wife and Jason’s mother, Jean. When Tim told Jason that she was dying, Jason responded not with trite words designed to make his father feel better, but with simple, brutal truth. He said, “This is going to be hard.”
“The understatement of it, and yet the enormity of it, made his brother and me laugh out loud,” Tim recalls.
Jason and Tracy mug for the camera before school. Tracy once introduced Jason to a visitor by saying, “Hi, I’m Tracy. This is Jason. He’s down and I’m up.”
If Tim’s book has a lesson, it’s about accepting one’s circumstances and making the best of them – not necessarily fixing them. Jason at several points in his life proclaimed that he was “done” having Down syndrome, but Tim says he thinks Jason has now made peace with who he is. And, as much as Tim wishes he could have his wife back, he knows he can’t, and he’s working to move on.
“I believe the book is a book of optimism,” Tim says. “You have just two options: You can move forward and smile, or you can wither and go into the fetal position and be a victim. Neither me nor Jason has ever seen that as any fun at all.”
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