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Down syndrome and the rights of the unborn

Down syndrome and the rights of the unborn

 

In Ohio, my home state, the state legislature has approved a bill to ban abortions for pregnant women with a diagnosis of Down syndrome. The bill is on Gov. John Kasich’s desk. He hasn’t said if he will sign it.

How do you feel about this?

Here’s what I think:

Viscerally, I couldn’t be more in  favor. With the undefeated aid of hindsight, I’m beyond thankful Jillian, now 27, is of this world. What she has brought to our lives can’t be described, only experienced. I can’t imagine our family without her in it. From dealing with families all over the country, via speaking events and personal correspondence, I’m convinced most everyone else in our “community” feels the same.

Practically, if it ensures that people born with Down syndrome will continue to benefit from public research dollars, I’m all in. If it’s legally OK to eliminate an entire segment of our population, why would our legislators feel compelled to ask for dollars for research and/or support for all impacted?

I’m sickened by any notion that people who don’t meet society’s definition of perfect can be done away with. At a time when we in the Down syndrome community are making progress, both concrete and perceptually, anything that furthers that progress should be supported. The definition of perfection is infinitely elastic.

Aborting a fetus because of a diagnosis is the ultimate form of discrimination.

I also think this:

A woman’s right to choose is fundamental. This is the hottest of hot-button issues, I know. It’s not dinner conversation. I respect that. I don’t pass judgment. There is also the question of exclusivity. Why does Down syndrome get a break, and not another physical or intellectual disability? I’m grateful, certainly. But why limit the bill’s scope?

I think, too, that elected officials can do better with the day-to-day things we face: Health care access, meaningful employment and independence, among others.

I think this should not become merely a rallying cry for anti-abortion activists.

That’s all the stuff I think. Here is what I know:

The world is a better place with Jillian in it. She is an example of our better selves. My mother once said to me, “Jillian is who the rest of us should be, but aren’t.” I can’t think of a better description.

Jillian isn’t unique. She is “special” only in the way we think all our kids are special. She comes with her own flaws and talents, same as the rest of us. Her innate gifts involve spectacular shows of the heart. We are perfectly blessed that she is family, and we get to know her.

The bill, if passed, will face tough sledding. The ACLU won’t love it. Similar laws in Indiana and Louisiana have been blocked by the courts. (One, in North Dakota, has not.)

So we’ll see what happens.

If only everyone could experience our joy. This wouldn’t be much of a debate then, would it?

Thanks for reading. As always. . .

Expect. Don’t Accept.

Paul

To contact Paul for speaking events or other appearances:

pdoc53@gmail.com

pdaugherty.com

513-313-9981.

An Uncomplicated Life, Paul’s memoir of raising Jillian, is available on Amazon.com and at brick and mortar stores everywhere.

 

 

 

 

 

Jillian’s uncomplicated holidays

Jillian’s uncomplicated holidays

Jillian and Grandma Jean have matching purses for Christmas

When Jillian was in college at Northern Kentucky University, Kerry and I made a habit of checking her bank balance. Jillian’s concept of money was not the greatest. She assumed it flowed endlessly, and once wrote herself a check for $500 when she needed spending cash. We didn’t want her bouncing checks.

This was of greatest concern around the holidays. Suddenly, we’d see substantial dollars evacuating the bottom line. “Where’s your money going?”

“I buy gifts,” she said.

Gift cards for people in the men’s basketball office. (She was a manager on the team). Lunches for players. The generosity was nice, and typical Jillian. Even if mom and dad ended up subsidizing some of it.

This time of the year is made for our kids born with Down syndrome. They are what the season should be: Grateful and giving, mindful and kind. Happy.

Jillian’s greatest strengths are our greatest weaknesses. She owns none of our wasteful emotions: Anger and jealousy, agendas and guile. She gets the big stuff right. Whom she loves and who loves her. I don’t think she’s unique. Jillian is, in fact, typical of our children.

In An Uncomplicated Life, the memoir I wrote of Jillian’s first 25 years, I included a chapter titled “Number 47” a reference to the 47th chromosome that defines her Down syndrome:

“Number 47 contains a lot that makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness, a plan for how to be better. Number 47 puts out the fires of ego and envy, vanity and guile. Thanks to 47, Jillian lives a life of joy, giving and receiving in equal time. Nothing defines her more. Number 47 isn’t a governor on her aspirations. It’s an extra storage tank for all her good stuff.”

The holidays should be a time of joy. Often, they are a time of lamentation. Why do I feel so lonely? Where do I fit? The season makes us wonder what makes happiness, and if we are doing all we can to achieve it and share it. It’s a good time for introspection.

I wish for a few things every year at this time: Health for loved ones, gratitude for family and friends, mindfulness for all I have. I wish for the ability to retain some of  that, every day of the year.

Jillian comes by it naturally.

I’ve never liked the term “special” as applied to our kids. We all think all our kids are special. We believed Jillian was special just because she was our child. There is an exception to that logic, though. When it comes to grasping what the spirit of the season means — and living that spirit all the time — Jillian is special. Same as all our kids born with Down syndrome. We have a lot to learn from them.

Thanks for reading.

As always,

Expect. Don’t Accept.

Paul

 

 

Happy Thanksgiving everyone!

Happy Thanksgiving everyone!

Jillian made the apple pie for Thanksgiving dinner! Before she moved out five years ago, Kerry put a big emphasis on teaching Jillian how to read recipes, use simple math and follow directions, all to prepare her for her independent life. Now, at 28, she and her husband Ryan cook entirely for themselves in their 2-bedroom townhouse.

This is what our kids can do. All they need is a little help and a lot of faith.

Happy Thanksgiving to everyone.

Expect. Don’t accept.

Paul

To New Parents, on Jillian’s 28th birthday

To New Parents, on Jillian’s 28th birthday

Jillian Daugherty Mavriplis turned 28 Tuesday. For 27 years and 364 days, she has made us happy and proud and better people for being her parents.

I don’t say this to paint a perfect picture. (It’s not perfect. I did say 364 days. The first day was awful.) I say it because it’s true.

The day Jillian was born, all Kerry and I wanted was for someone to tell us everything would be OK. We learned quickly that sort of verbal hug was either (1) hollow, and delivered by someone with compassion but with no hands-on experience or (2) not coming at all.

I have 28 years of experience to tell you, it’s all true. It is going to be OK. Better than OK. It’s among the greatest experiences of our lives.

New parents, this is what you have to look forward to:

  • An individual without agendas or guile, who passes no judgment. Someone who, when he/she asks you how you’re doing, actually is interested in the answer.
  • A person who, with help, will come as close to fulfilling his/her potential as anyone you know.
  • A person who represents the human ideal more closely than anyone you know.
  • Someone you’d treasure as a friend, a co-worker or a close relative. Whose compassion and empathy are always available.
  • Someone who really doesn’t Sweat The Small Stuff. Who values the people in his/her life above all else. “If you love someone, they’ll love you back,” Jillian said to me when she was in middle school. Life should be so easy.

Jillian was born the day of the San Francisco earthquake, Oct. 17, 1989. We spent the day angry, grieving and cursing God. Mostly, we were sad and scared. I’d asked God to take me, in exchange for a Jillian without Down syndrome. Request denied.

I’d shaken my fist at the world, cried a Mississippi of tears. We spent that first night in the maternity ward. In the middle of it, we went down the hall to the NICU and peered through the window to the tiny crib where Jillian slept. And we decided the grieving was done.

What happened next was a wonderful alchemy of our desires and Jillian’s will. What resulted was a lifetime of learning we’d never have experienced without our daughter with the supposed disability.

As the singer Guy Clark wrote, in the tune The Cape, “She did not know she could not fly/And so she did.”

Jillian is married, living entirely independently with her husband Ryan in a 2-bedroom townhouse for which they pay all the rent. They each graduated from high school and attended four years of college. They each work full time. They cook, clean, do laundry, walk the dog, watch TV, have date night. They are our better selves.

We learn from all our kids. They own a future we won’t see. We raise them to leave us and make the world better. We are a reflection of how well they do.

Kerry and I wouldn’t be who we are without Jillian’s instruction. We’re the lucky ones. It’s an enduring good fortune. I swear.

As always: Expect. Don’t Accept.

An Uncomplicated Life, a memoir of raising Jillian, is available on all platforms at Amazon.com. To book speaking engagements, contact Paul or Kerry at pdaugherty.com or 513-313-9981

 

Still No. 1 after all this time

Still No. 1 after all this time

jillian and ryan enquirer 1st anniversary

Harper Collins published An Uncomplicated Life in March 2015. Two and a half years later, it’s back to being an Amazon #1 best seller. It was never the writing that made the book an evergreen.

It was the subject.

It was the message.

Expect Don’t Accept. See, Don’t Look. Seize the Day, Live in the Moment. We’ve delivered the same message to corporate execs where we live, in Cincinnati — who were interested in hiring people with disabilities — because it’s hopeful, universal and timeless.

Allow Jillian to define Jillian, same as you would your “typical” children.

Let her explore, take chances, live fully. She deserves that. Everyone does.

Relish her wins, delight in her spirit. Allow her to teach you a little about what really counts.

All Kerry and I have ever done for our daughter born with Down syndrome has been to give her the same opportunities her brother got. Jillian did the rest.

She’s not some superkid dynamo. She just seized chances. There is no reason any other kid can’t do what she and her husband Ryan have done.

A quick update:

Jillian and Ryan celebrated their 2nd wedding anniversary in June. They live fully independently in a two-bedroom townhouse for which they pay all the rent. (Yay!) Jillian works two jobs, the first as an assistant to the athletic director at Northern Kentucky University, where she attended college, the second as a teacher’s assistant at our local elementary school. Jillian reads to the kids, helps them with math, plays basketball with them at recess. It has been a big success and we’re striving to get her a full-time job in the school district.

Jillian and Ryan also have a dog, Gracie. They shop for groceries, cook their own meals, do the laundry, clean house etc. Everything the rest of us do.

The process was complicated. The results were not. Jillian and Ryan really worry about one thing: Whom they love and who loves them. The rest is noise.

After all this time, Jillian and I (and sometimes my wife, Kerry) are still making the rounds, locally and nationally, speaking about her uncomplicated life. We’re in Connecticut in November, at that state’s Down Syndrome Congress’ convention. Later that month, we speak on Long Island, to a similar group.

In the past two years, we’ve been to Minneapolis, Charlotte, Washington, DC twice, suburban NYC, Kansas City, Delaware and suburban Philadelphia. We never run out of inspiration, or those who seek it. We’d love to share the journey with you.

Meantime, thanks to everyone who has collaborated to make An Uncomplicated Life a success. We’re flattered, humbled and grateful.

Paul

FB: Paul Daugherty or pauldaughertywriter

Twitter: @enquirerdoc

email: pdoc53@gmail.com

Sacramento, here we come!

Sacramento, here we come!

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.

An Uncomplicated Life — Book Review

See you in Sacramento!

See you in Sacramento!

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.

Paul Daugherty

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.

Happy 2nd anniversary, Jillian and Ryan

Happy 2nd anniversary, Jillian and Ryan

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 […]

via Jillian’s 2nd wedding anniversary — kerrypdaugherty

We’ll be in Sacramento!

We’ll be in Sacramento!

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.

As always. . .

Expect. Don’t Accept.

 

Being there matters

Being there matters

Jillian, home from the hospital.

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.

Priorities.

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.