Doc's daughter: Raising a child with Down syndrome

Raising Jillian Daugherty was a gift. And a knife fight. But mostly a gift.

The hard part was never Jillian. She was, and is, as charming and relentless as a parent could hope their child to be. The thing that was hard was only the rest of the world.

Jillian has Down syndrome. The only thing her parents ever wanted was for that fact to be a feature of their daughter, not her definition. Their goal, distilled to its essence, was simple: let Jillian set her own limits. Paul and Kerry Daugherty would set her up to succeed and then let her go as far as she could. "All we've done," Paul said, "is fight for her right to be Jillian."

Same as any parent, really.

Paul is The Enquirer's sports columnist. Tuesday his book about raising her, "An Uncomplicated Life: A Father's Memoir of His Exceptional Daughter," will arrive in bookstores and online.

Jillian was born Oct. 17, 1989. She arrived in the world, a week early, while Paul was on an overnight flight back to Cincinnati from the World Series in San Francisco. He walked into Room 507 of Good Samaritan and found a dream. His happy wife holding a cute and healthy baby girl.

Paul went home to pick up Jillian's older brother Kelly, then 3. When he walked in the door, the phone was ringing. Kerry told him to get back to the hospital. Their little girl was still cute and healthy. She also had Down syndrome.

"There are days you remember always for the weight of their woe," Paul writes in the book.

Paul and Kerry gave themselves that one day to feel a sense of loss and anguish. "We took a day to grieve, that was it." Then they started repeating phrases to each other and themselves.

• "All you can do is all you can do."
• "Nothing is definite."
• "Let Jillian be Jillian."
• "Expect, don't accept."

But there was lingering sadness and anxiety. When the diagnosis was new, Paul looked incessantly, even frantically, for the thing he could do to fix this. Kerry would cry each night when giving their daughter a bath.

They worried about Kelly, Jillian's brother. Kerry said those fears were lifted immediately. "On the day we brought Jillian home from the hospital, we were filled with the expected concerns, including how it will affect Kelly to have a sister with DS. Later that day we found him in her cradle," Kerry said. "That's when I knew this would not be an ordinary sibling relationship."

Paul and Kerry realized quickly that the world around them would struggle to see Jillian. Not to look at her, but to see her. To see her dreams and possibilities. People said "I'm sorry" a lot after her birth. A day or so before Jillian was baptized, Kerry mentioned to the minister that Jillian had Down syndrome. "That's all right," he said. "We'll baptize her anyway."

The Daughertys learned the facts of the condition. Then they moved on accordingly.

Down syndrome happens when a person is born with a full or partial extra copy of chromosome 21. The National Down Syndrome Society says this "additional genetic material alters the course of development and causes the characteristics associated with Down syndrome."

Down syndrome is a condition, not a disease.

Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome can fully participate in public and private educational programs. They can and should be encouraged to lead full lives.

Paul wrote about those experiences in The Enquirer as Jillian grew up.

Jillian has learned to tie her shoes. The other morning before school, she summoned me to the chair in the family room. "Dad, come here quickly," she said.

She took the strings to the sneakers, crossed them and pulled. She made two loops and crossed them, high in the loop the way I'd told her, so there would be a hole underneath big enough to pull one of the loops through.

Jillian nimbly stuffed one of the loops through the hole and pulled it tight. "See?" she asked...

The little things bring the greatest joy. The off-handed I-love-you from my 13-year-old son, the feel of my wife's hand across the back of my neck, a round of golf in the quietly beautiful last days of fall. The thrill in Jillian's eyes after she has tied her shoes.

Everyone is here for a reason. Everyone has a purpose. Jillian's purpose, one of them, anyway, is to put the magnifying glass to the ordinary joy of living. It ain't no sin to be glad you're alive, is what Bruce Springsteen sang. He had it nailed.

On her first day of first grade, Jillian wore black mary janes with two straps, and a checkered gingham dress.

By this point, Paul and Kerry realized that if it takes a community to raise any child, it takes a particularly decent community to raise a child like Jillian, who requires more patience and perseverance. Paul and Kerry called the people who were able to step into those roles "guardian angels." Especially the good teachers who care more than any parent has a right to expect.

"She's a communal triumph, a laying on of many hands," Paul wrote in 2001. "None have been stronger or more giving than the hands of the guardian angels. All they did was open their hearts and let my daughter live there."

Homework was a nightly event. In 4th grade, she came home each day with eight vocabulary words. She needed to know their meaning and how to spell each word. She was tireless in her work ethic, but one night, she could not get her head around the how to spell the word "store." The "o" was tricky, the "e" was causing problems. Even when she remembered that "e," it sometimes went in the wrong spot.

It took two hours to get the words down that night. Including, finally, "store." Paul started jumping around the room like she had won the World Series. He danced and sang a song about spelling s-t-o-r-e.

"We were determined that we were going to get it," Paul said. "And she did."

That was 15 years ago, and recently I asked Jillian to spell "store" for me again. Paul leaned forward on the couch next to his daughter. The anxiety returned. The want was back. The years slipped away. He waited. Jillian nailed it: "s-t-o-r-e." Paul leaned back in his chair. "Yes!" he said, and pumped his fist.

Mornings were always a special time for Paul and Jillian. A sports writer, he worked from home a lot. Kerry, a school teacher, had to leave early, so Paul made the breakfasts and got the kids off to school.

"Dad, why you not a morning person?" Jillian asked one day. Paul, who is profoundly not a morning person, looked for his coffee. "I am a big morning person," Jillian said. And so went their mornings. After breakfast, he would walk Jillian down the driveway to wait for the school bus. It became their routine. In the book Paul wrote of his mornings with Jillian and Kelly. About cereal and Pop-Tarts and finding shoes and making lunches.

One morning, at the start of 6th grade, Jillian declared her next level of independence.

"Dad, we need talk 'bout something."

"Okay."

"You know how I always be your little girl?"

"Yes, Jills. You will always be my little girl."

"Well, your little girl is growing up."

"I know."

"I don't want to hurt your feelings."

"You won't. What's up?"

"Well, I'm in 6th grade now."

"Yes, very proud of you."

"I know you like to walk to the bus stop with me, and I like it, too."

Then she got to her point.

"I think I want to go to the bus stop by myself now."

That morning she went down the driveway on her own. A light rain fell.

Jillian seizes days. I'm not sure she's ever had a bad one. I'm not sure it's ever occurred to her.

You may or may not know that she has Down syndrome. That's only noteworthy for the grace and beauty with which she wears it. The night before the first day of school, she crammed her backpack with notebooks, note cards, binders and paper. "I love school," she said....

And yet, the older Jillian gets, the narrower her world becomes. I see it when the birthday invitations stop coming, the play-dates disappear, the phone no longer rings. She spends a lot of time in her room, listening to music.

I wonder how she does at school. I wonder if the kids will stop being gracious. I wonder how often my kid has to eat lunch by herself. I'm buoyed by her spirit but I wonder how much she doesn't say.

Paul and Kerry could take her to every doctor's appointment. They could get her to every therapist. They could always make the schools follow the law. The had countless meetings at Jillian's schools to make sure she was being educated. Some of those meetings turned into steel cage matches. Bitter and divisive.

"You've failed my daughter," Paul told the principal at Loveland High School one particularly contentious day. Then he said it again in case she missed it the first time.

Those meetings were never easy, but the Daughertys had the law and were ready to use it like a hammer. That was their decision from the day she was born. Or the next day.

"It'd be just one day before we made the turn from tragedy to hope, from lost to found. After that first terrible day, we never stopped working, never paused in our striving," Daugherty wrote in 2012. "Jillian would be all she could be. Her disability would not define her. Anyone who decided it would was in for a bad time from us."

But you can only fight some opponents. An adult on one side of the table is one thing. That person has to listen to reason and should follow rules of decency.

You cannot make people like your child. You cannot force them to see the child you see. There is no mandate. There is no hammer to swing, no law to cite. Especially not with children. Kids, Jillian's peers, would like Jillian or they would not. Some took the time. Others chose not to.

By the power of her personality Jillian did make friends. She made friends both "typical" and "atypical." She is nothing if not fearless and social. The world never really stood a chance.

Paul and Kerry are parents. One concern can always replace the next. The well of worry is bottomless. Some nights there are only fears and prayers.

"What we can't do is make people like them and respect them. Embrace them as good and equal citizens of the world," Paul wrote in 2013. "My worst fears for Jillian did not involve education, independence or a career. They were if she'd ever know the smell of a man's cologne."

Still, Jillian never ceased to amaze. She learned to ride a bike. She became a terrific swimmer. She made friends. She graduated from high school and then from Northern Kentucky University.

Jillian challenged people every step of the way. Not by demanding respect, but by earning it. She worked hard, she got things done, she didn't ask for help or expect it. The challenge was for people to re-imagine how they considered Down syndrome, or people with any condition like it.

Paul said this is people taking the time to see his daughter, and not just look at her. "There is a fundamental difference, you know. Between looking and seeing, that is. Looking is passive. It requires nothing of your spirit, soul or conscience," Paul wrote in his column. "Jillian is judged by people who look at her. Seeing is an active willingness to know the person within. It requires empathy and a passion for the eager human spirit."

Along the way, Jillian met a nice boy on a soccer field, they went to a dance and so it began. Late in 2013, Ryan Mavriplis called Paul and asked to meet him at a bar. He wanted to ask him a question.

"I shook his hand, told him how immensely proud I was of him and her andsuggested that if he didn't treat Jillian like a queen, I would hunt him down.

"I know where you live," I said.

"Yes, sir," Ryan said.

The diamond belonged to Ryan's maternal grandmother. The band was about the circumference of a dime. It fit Jillian like a fondest hope.

There are days in our lives we remember always, for the joy they hold. Days when everything you've hoped for and strived for and agonized over and wondered about and dreamed about and lived for become fairy-tale true. We live for those days. Last Friday, I'd never felt more alive."

Paul said that raising his two children was night and day. Not because their daughter has Down syndrome and their son does not. The real differences were far more subtle. Jillian was boisterous and social. Kelly has always been more reserved and quiet. The challenge sometimes was to get Kelly to start talking and Jillian to stop.

They worried about both. Although less now. Kelly is happy and living in New York. Jillian works for the athletic department at NKU, and Ryan works at Kroger. The Daughertys are beginning to think they have done what they have set out to do. "We wanted Jillian to be allowed to define Jillian," Paul said. "Same as any other kid, that was it. Getting there was somewhat more complex and ongoing."

And now Jillian is Jillian in full.

She and Ryan have an apartment and a wedding to plan that will certainly be a production of the highest order. Paul tries to pretend he is grumpy about how much it will cost him. Nobody believes him.