Kerry and I will be setting up shop Thursday-Saturday at the National Down Syndrome Congress convention in Sacramento. We will have hard and paper copies of An Uncomplicated Life, our memoir of raising our 27-year-old daughter Jillian, born with Down syndrome.
Jillian’s story offers realistic hope to any family blessed to have a child born with an extra chromosome.
Jillian is married, works full time and lives fully independently in a townhome with her husband Ryan. Stop by our booth and say hello.
Meantime, here is what I consider the best review of An Uncomplicated Life. As always: Expect. Don’t Accept.
My wife Kerry and I have a booth at the National Down Syndrome Congress annual convention, July 18-20 in Sacramento. We will be signing and selling An Uncomplicated Life, our memoir of raising our daughter Jillian, now 27. born with Down syndrome. Jillian graduated high school, attended four years of college and 2 years ago married her longtime boyfriend, Ryan Mavriplis.
They work full time and live entirely independently. Please stop by, say hello and be inspired.
Thanks, and as always:
Expect. Don’t Accept.
An Uncomplicated Life can also be purchased online at Amazon.com on all platforms. Paul And Jillian are available to speak at your group’s conference, gala or fundraiser as well. Call 513-313-9981 or write the website pdaugherty.com for more info.
Two years ago today, Jillian Daugherty and the estimable Ryan Mavriplis were married at a nature preserve near Cincinnati, witnessed by 150 of their closest family and friends. The magic of that day was obvious. Beyond the obvious was this: Everyone there had a hand in getting the couple to that moment. That made […]
for the National Down Syndrome Congress convention, July 20-22.
Kerry and I will be signing and selling An Uncomplicated Life, our memoir of raising our daughter Jillian, born Oct. 17, 1989 with Down syndrome. Jillian graduated high school, attended 4 years of college and has been married 2 years. She and Ryan live entirely independently with their dog, Gracie, in a 2BR townhouse.
If you’re seeking a little inspiration, stop by the booth and say hello.
The golfer Phil Mickelson has decided to skip the upcoming U.S. Open in Wisconsin, so he can attend his daughter Amanda’s high school graduation in California. The two coincide.
For those not familiar with golf, the Open is one of four “major” championships. It’s also the only major Mickelson has not won. If he did win it, he’d become just the 7th man ever to win all four. He has finished 2nd six times.
It’s a very big deal.
Especially for a guy like Phil, who is 47. The oldest Open winner in history is Hale Irwin, who was 45 when he won in 1990. Elite athletes are self-centered by nature. It’s a reason they’re so good at what they do. Mickelson’s choice might seem like a no-brainer to the rest of us. For a person in his position, it was exemplary.
“I never really contemplated not being there,” Mickelson said last Saturday, when he announced his decision. “The birth of your child, any child, but especially your first child, is the most emotional event you can ever experience and share with your wife.’’
Jillian was born when I was on an airplane, somewhere over the West Coast. It’s among my deepest regrets.
It was 1989. I was covering the World Series in San Francisco. Jillian wasn’t expected for at least another week when Kerry called my hotel room in SF to say she was heading to the hospital. I booked a red-eye as soon as we hung up. Kerry got to Good Samaritan a little before 1 AM. Jillian was born within minutes.
I could have forsaken the Series, with the birth so close. I didn’t. I chose work over family, believing I could do both.
There is irony in Phil Mickelson’s story. His wife Amy was pregnant with Amanda in 1999. She was due at precisely the same spot on the calendar as Amy’s upcoming graduation: In the middle of the US Open. Phil played that week. He also said he would leave the instant Amy went into labor. His caddie was equipped with a beeper just for the purpose.
As it turned out, Phil didn’t get beeped and finished 2nd. The Open ended Sunday. Amanda was born the next day.
After Mickelson lost that day in ’99 to Payne Stewart, Stewart held Mickelson’s face in the palms of his hands.
“Good luck with the baby,” Stewart said. “There’s nothing greater than being a father.”
Four months later, Payne Stewart died in a plane crash.
Nothing matters so much as being there. There are events that are life itself: Births and deaths and proms and weddings. And graduations. To miss them, especially for something as ultimately meaningless as writing about baseball, is a huge mistake. There will always be another World Series.
In raising Jillian, Kerry and I were always There. Being There is mandatory. It helps that it’s also the reward of a lifetime. Jillian’s first prom, her high school graduation, her first day of college, her wedding. Also, the endless frustrations of the IEP meetings, the ongoing reach for inclusion, the fight for “typical” acceptance. Being There matters.
I’d like to think I learned from missing Jillian’s birth. I wished I’d been more like Phil Mickelson. What’s the saying?
“No one ever sat on his death bed and said I wish I’d spent more time at the office.”
As always, Expect Don’t Accept.
Paul Daugherty’s memoir of raising Jillian, An Uncomplicated Life, can be purchased via Amazon.com or on his website, pdaugherty.com. He and Jillian speak frequently around the country and are available to speak at your event, convention etc. Contact Paul via his website or by phone at 513-313-9981.
Jillian has a new job, at least until August. The ease, acceptance and grace that accompanied it are hopeful and gratifying.
Both of her regular jobs, as an assistant to the Athletic Director at Northern Kentucky University and as a 1st-grade teacher’s assistant, charged with helping the kids with reading and math, run the length of the school year. She begins officially next week at LA Fitness, tasked with maintaining the cleanliness of the workout equipment and locker rooms.
Most encouraging was how easy it was. Jillian walked from her apartment to LA Fitness, introduced herself, said she was seeking summer employment and immediately was given a tour of the place. She filled out an online application that night, and was hired a day later.
Kudos to LA Fitness. In our area (Cincinnati) there has been a lot of positive discussion re hiring people with disabilities. Last week, Kerry and I attended a hearing at Cincinnati City Hall on the subject. Person after person spoke of his or her job, the satisfaction they derived from earning a living and the respect it afforded them.
Equally important, employers praised the work ethic, loyalty and joy that their workers with disabilities brought to the workplace. The council committee members were impressed. Here’s what I told them, before a packed house in Council chambers.
“We’re only as good as the way we treat each other. When you hire a person with a disability, getting a reliable employee is only part of the bargain. You’re giving a job to someone who is grateful for the opportunity and will show that gratitude in different ways every day.
“Former NKU basketball coach Dave Bezold hired Jillian as a team manager her 2nd year at school there, five-plus years ago. Jillian was a manager for three years under Dave. Then the school fired him. Firing a head coach usually means also firing his whole staff,. When NKU let Dave go, they let Jillian go, too.
“I made one call to the first-year athletic director, wondering if Jillian might be retained. He was noncommittal. Then the kudos poured in. Staffers in the athletic department suggested that the AD rethink things. They cited Jillian’s positivity. They said they’d been better for knowing her, that her upbeat and caring nature often turned bad days around.
She got her job back.
Jillian takes two metro buses a day to get to NKU by 8:30 a.m., and two home. From the townhouse she shares with her husband in the suburbs, she rides downtown, then transfers. I’m not sure I could figure that out. Even if I could, after awhile I’d feel put upon having to do that every day. Jillian relishes it, to the point where we’ve told her she doesn’t have to set her alarm for 4:30 a.m. to catch the 7:10 bus.
She’s hardly unusual. All of us know this. Folks with disabilities have the big stuff right: Kindness, good humor, care for others. Employers want to help our kids, because our kids help them.
Isn’t that the way it’s supposed to work?
Congrats to Jillian, who will be guaranteed to have the cash to sustain the lifestyle to which she has been accustomed.
Translation: Reds games, Starbuck’s, Date Night, Penn Station and, oh yeah, her half of the rent.
Bigger Ups to LA Fitness. Thank you. You won’t be disappointed.
As always: Expect, Don’t Accept.
An Uncomplicated Life, my memoir of raising Jillian Daugherty Mavriplis, is available on all platforms at Amazon.com. Speaking requests for Jillian and me can be made via this website, or by calling 513-313-9981.
When Jillian was in high school, I attended her IEP meetings as an enforcer. Kerry my wife knew the law. Our good friend Ellen Mavriplis – Jillian’s future mother-in-law – knew the law entirely. Her business, Inclusion Advocates, is based on upholding it.
I was there to bang my fist on the table.
Every time we sat across the big conference table from the school people who fought us, I wanted to produce a picture of Jillian, slam it on the table and say, “Do you know who we are talking about here? Jillian is not a line-item. She is a child.
“Jillian is not a theory, a philosophy or a test case. She is a student. Further, she is a willing student, an enthusiastic learner and someone who wants only to please. How many ‘typical’ students of yours fit that description?’’
That’s how I feel today, the day after House Republicans passed the American Health Care Act. It’s a small, mean bill. No wonder the president loves it. Here’s what it would do “for’’ Jillian:
Slash Medicaid by $880 billion-with-a-B over the next decade. Here’s the NYTimes on those ramifications:
As a result, 14 million fewer people would have access to health care by 2026, according to a C.B.O. analysis of the earlier bill, which contained similar Medicaid provisions. The cuts would also hurt special education programs, which receive about $4 billion from Medicaid every year.
Backers of the law say folks with pre-existing conditions would still be eligible for health coverage. “High-risk pools’’ would assure that. But the bill would leave it up to states as to how much money would be in those pools. From a Washington Post editorial:
The Brookings Institution’s Matthew Fiedler warns that once these states got federal waivers allowing insurance companies to hike premiums on sick people, many of those with preexisting conditions would be priced out of any comprehensive individual insurance market plan, whether or not they kept coverage continuously to that point. There would be few requirements on states to offer a real backstop — no mandates on who or what a high-risk pool must cover, or even that a high-risk pool be created.
In other words, those in the “high-risk’’ category could be charged prohibitively high rates. Combine that with the decimation of Medicaid and some people would be priced out.
Such as my daughter.
On top of that, the bill would eliminate Planned Parenthood for a year. They expect you to raise a child with a physical or intellectual disability, possibly without the benefit of health insurance.
This sort of legislative meanness is second nature to a president who made fun of a reporter with a physical disability, and who nominated for Secretary of Education a woman who didn’t know what IDEA was.
Nor should it come as a surprise that Republicans voted overwhelmingly in favor. Consider this gem of a quote, from Alabama Rep. Mo Brooks, who said this week that “people who lead good lives” don’t have pre-existing conditions.
Republicans believe people should be punished for having a genetic condition. It’s Jillian’s fault, in other words.
She was 5 weeks old when she spent 11 days in intensive care with the bronchiolitis that almost killed her. The bill for her stay came to low-six figures. Our insurance paid most of it. We were grateful.
Jillian has proceeded to become a tax-paying, contributing member of society, who has never required public assistance of any sort. She and her husband Ryan live entirely independently in a townhouse for which they pay the entire rent. Thank goodness we had insurance protection and a federal law mandating a free and appropriate education. We were lucky back then. Now?
We Americans like to see ourselves as good and generous, empathetic and caring. We are a beacon for the rest of the world. Until we aren’t.
We can only hope that the collective conscience of the Senate rises up and shreds the AHCA. Write your elected officials. Express your concern. Not only for your kids. For everybody’s kids. And for the future of America, the would-be beacon. We’re better than this.
We’re only as good as the way we treat each other.
Who are we now?
I’m beginning not to recognize us.
Thanks for reading. As always, Expect, Don’t Accept.
I don’t often do this, but I’ve gotten so much feedback on this piece, I decided to re-post it here. It’s about our move across town, from a house we lived in for 29 years.
Aside from the expected upheaval — 29 years is a long time, ask your basement and your attic — there came a psychological wounding that was a bit of a surprise. A house can inhabit a soul. I know that now.
Further, the notion of change is something we always fretted over when it came to Jillian. Changing from elementary school (one teacher, one classroom) to middle school (many of each) was a concern. Having Jillian ride the metro bus from our area to Northern Kentucky University was a concern. Then, when Jillian and Ryan moved into their own place, without any outside support, was a sea change.
We always allowed Jillian and Ryan to define themselves, and they’ve handled it very well. They maintain their 2-bedroom townhouse as well as anyone else. They take good care of their dog, Gracie. But every letting-go was a little scary.
I guess this move was, too. I’m a man of routine, of habit, of getting attached to things. I’m a career melancholist. A month after the move, I still refer to the old place as our home. This new, down-sized place is our house. Anyway, change is good and necessary and takes courage. I’m glad we’ve changed and our courage has been put to the test. Our kids are better for it. But I still miss Jillian in her room in our home.
Here’s the column, from the Cincinnati Enquirer. Thanks as always, and. . .
Expect. Don’t Accept.
An Uncomplicated Life is available in hardcover, paperback and on Kindle and audio, at Amazon.com
MOVING LEAVES AN ACHE
Any day now, the guys in the trucks will do my job. They will appear with long hoses attached to bulbous payloads to spew an endless stream of brown mulch onto the flower beds and treed areas of my brand new yard.
It’s a perfect yard, made fine and untouchable by strangers I pay for the privilege. It’s part of the dues, homeowner’s fees, whatever they call it. The workers mulch, they trim, they edge. They cut my grass. I cut grass for 48 seasons.
Last week, we left our home of 29 years. We raised two children and three dogs there. We lived a lifetime in what now seems like a whisper across a crowded room, heard only by those intimately affected. A big chunk of living occurred in what is now someone else’s space.
Now I know how Brooklyn fans felt in 1958 and what it was like in Baltimore in 1984, when the moving vans came to steal the Colts.
This moving, this shedding of formerly essential bits of big life – this Downsizing – strikes me as a concession. It’s supposed to make life lighter. So why do I feel so heavy?
The snow flies, the world turns, the neighborhood changed. Everyone moved. The Lairds and the Warzalas, the Snyders and the Slatterys. Our best friends in the neighborhood lived next door to us for 26 years. The Rutkouskys are moving later this spring. The regret isn’t that we’ve gone. It’s that we didn’t appreciate things properly before we left.
Kerry my wife sees it as a new adventure. I liked the old one. This isn’t a new “journey.’’ It’s a diminution and a giving-in. Because I am Irish and perfectly suited to professional melancholy, I see it no other way.
Houses inhabit souls. I lost a loyal companion last week. He sheltered all of us and knew all of us better than we knew ourselves. For three decades, he hosted our full lives.
He was there when Jillian took her first tentative steps, across the rug in the living room. He enabled her prance down the stairs from her bedroom to the kitchen, where she met her Homecoming date, her smile a sun, her hair just so. The house offered subtle illumination on a dream, as the couple’s first kiss under the porch light foreshadowed their marriage a decade later.
The house bore witness to Kelly hanging from the mantel as a 3-year-old, then moving his bedroom to the basement at 16. When he began to play the guitar, the house, not the rest of us, heard his first tentative notes.
The house hosted graduation parties and Super Bowl parties and heard every hushed dish from every neighborhood woman who ever attended Bunco Night. The stories that house could tell. The house attended the final honoring of two dogs, whose ashes we spread beneath a towering pin oak at the edge of the woods.
What’s it like now?
It’s turning left and not right, or not turning at all, just doing 55 in the slow lane as the car eases past the old exit. It’s going to the big-box store and not buying tomato plants and another knockout rose bush. It’s not the mechanics of it that hurts. Anybody can get the mail delivered and the pictures hung.
It’s an errant wonder – “when are we going home?’’ – and a realization that we’re not.
It’s sitting in my new office that looks out into the hall and dreaming of my old office, which faced the woods. I’ll still have a deck and the radio tuned to the Reds, but now I’ll see as many cars as fireflies.
Home is a big word and one that must be earned. It’s true that people make a house a home. Wonderful houses can be lousy homes. Understood. But you can’t have one without the other.
It’s like a favorite pair of shoes or jeans. They are extensions of our personalities, how we like to see ourselves and how we choose to present ourselves to the world. Welcome to our home.
The new place is perfect. The old one was perfectly imperfect. Its perfection was in its well-meaning mess. It spoke to a man’s chance, on a soft and warm night in mid-June, to gaze at his grass and his trees, his hostas and his knockouts and say, “I love this place.’’ This home.
The new people are excited about our old home. They say they want to raise a family there. It’s a good house for that. Sturdy and lovely. And experienced. We can tell you that for sure. We lived there once.
I don’t mean that disrespectfully. There’s a lot to celebrate, not the least of which is the triumph of the human spirit people with Down syndrome demonstrate all the time. Resolutely, our kids/relatives/friends are showing the rest of us how to be better people. I think the rest of us are beginning to take notice.
Happy day to you, Liam Langan, and you, Violet Ryan and you, Rob Knodle and you Katie Daly and Sarah Klein. I am better for knowing you all.
But here’s the thing:
This day, March 21, 2017, seems like just another day. And I couldn’t be happier about that.
Jillian Daugherty Mavriplis, 27, woke up at 6 or so, arranged for the Uber to pick her up at 7:45 and take her to her job at Loveland Primary School, where she works as a teacher’s assistant in a 1st-grade classroom. She walked the dog, took a shower, got dressed for work and had some breakfast. Same as always.
I will be happiest when we no longer need a Day. There isn’t a National Typical Person Day. There is no Married Guy Goes to Work Week. I want people with Down syndrome to be so entirely “mainstreamed” — for lack of a better word — that they don’t need a day to commemorate their awesome-ness.
The rest of us should have a day of thanks that we know these people. Jillian and I speak all the time about this. The great little secret about having a child with Down Syndrome is that you blessed forever, in a way “typical” folks are not. I wish I could live a life free of agendas and guile. I wish I were as thoughtful as my daughter and her husband, Ryan.
Number 47 has never been a governor on Jillian’s aspirations. It’s an extra storage tank for all her good stuff.
In my day job as a sports columnist for the Cincinnati Enquirer, I author a Monday through Thursday blog called The Morning Line. It’s a mish-mash of sports, culture and personal asides. I conclude each post with a Tune O’ The Day, most often taken from my memory-bank of ’60s and ’70s rock.
This tune isn’t that.
It’s a song written by the country twanger Guy Clark. It’s performed here by country gal Patty Griffin. I put it on TML today.
It’s called The Cape, and it tells the story of a dreamer who never stops striving. Who sees all his dreams as manageable. Who isn’t afraid to follow them to their appointed ends. Do or die.
It makes me cry every time I hear it, and I’ve heard it hundreds of times.
It’s Jillian. She is fearless and hopeful, always. This might be the part of her personality that has served her best. Jillian has never not tried. She wanted to be a member of the JV Dance Team in high school, the young ladies who entertain at halftime of basketball games. Because we let Jillian define herself — same as her “typical” brother — we said OK.
We asked the coach. Her immediate response was, “That’d be great. Jillian can cue the music for us.”
Kerry got the music the team would use, and a video from the previous year’s routine. She gave it to Jillian.
For a month before tryouts, Jillian stood in our basement in front of a full-length mirror and practiced the routine. If I ever again hear the Run/DMC and Aerosmith version of Walk This Way, I will become an official member of the Barry Manilow fan club.
Jillian made the team.
There are lots of stories about her like that one. Her disability was never a reason not to try things.
We say we “love” lots of songs. Usually, that’s an overstatement, even for those of us who count music among life’s essential joys. Music is a friend, a lover and a time machine. Music makes us feel good. And sad, even as we sometimes enjoy that sadness. You know what I’m talking about.
I love The Cape.
Take a listen, and see if it doesn’t describe your child and, possibly, a reason you love him or her so much.