Remarkable Families Speech
3/1/13
Thank you very much for having me here today. We met at this same gathering four years ago, just as my
then-19-year-old daughter Jillian was about to enroll at Northern Kentucky University. I’m proud and happy
to say that Jillian is in what she calls her “senior’’ year at Northern, and flourishing.
She takes regular ed classes, usually two a semester. For three years, she has been a full-time manager of
the men’s basketball team. She has led tours of the campus, for prospective students with disabilities, and
their parents. She was featured in the NKU alumni magazine, with the front-cover headline, “Is Jillian
Daugherty the new mayor of NKU?’’
Last September, Jillian and her boyfriend of nearly 8 years, the estimable Ryan Mavriplis, who also
attended NKU, moved into their own apartment together. They cook, they clean, they shop for groceries.
They are regulars at happy hour in the complex’s clubhouse. When we helped the lovely couple move in, we
wondered how often we’d have to be at their place, helping with all the everyday ordinaries. Now, we
wonder when they’re ever going to invite us over.
Jillian will move on from NKU in the spring. Our hope is, she will find work in our local school district as
a teacher’s aide in one of the elementary schools. For the past four summers, she has worked at two area
preschools, reading to kindergarteners and helping them with arts and crafts projects. The little ones are
drawn to her.
All of this is a way for me to brag about my daughter, of course. But also to show everyone here just how
far we’ve all come, and that an intellectual disability such as Down syndrome is not a “handicap.’’ It’s an
adventure, every bit as satisfying and fulfilling as our own, only taken on a slightly different road. It’s like
going to LA via Boston. It’s like flying from Cincinnati to Tampa via Cleveland. I did that just last week.
The road less traveled is always going to be dicier to navigate. That’s why it’s less traveled. But so very
often, the scenery is better. It doesn’t flow in a straight line. It meanders. It might have a detour or two. It’s
always more interesting, though. All you have to be is not in such a hurry.
And be willing to persevere.
The author William Least Heat Moon wrote a book awhile back, called Blue Highways. He traveled
America’s back roads – the thin, blue lines on a road map – to find what remained of the country’s soul. The
passage was windy, bumpy, at times all but impassable and impossible. But Moon was determined to see it
through. And so he did.
What he got for his troubles – in addition to a best-seller – was a journey of spirit. He finished it with an
aching back, but a wizened soul. He discovered places he’d never seen before, and never would have, on the
road most traveled. The journey made him a better man.
I think of Jillian’s life like that. We have, by necessity, driven the blue highways with her. It has taken
more time to do things. Or maybe, it has allowed us more time. There is a huge difference.
Jillian has slowed us down. With her, we had no choice. I’m here to tell you: Slow is good. Slow allows
you to smell the roses. And touch them and look at them. Really look at them. So many wondrous moments
are lost now, in our need for speed. The suburban bargain too often includes getting from Point A to Point
B, without enjoying the ride. As John Lennon noted, Life is what happens to us when we’re busy making
other plans.
Our son Kelly is three years older than his sister. As a typical child, he did typical things, on a typical
schedule. Walking, talking, tying his shoes, riding a two-wheeler, going to homecomings and proms,
graduating from high school and college. I’m sad to say we didn’t enjoy most of that wonderful living. We
assumed it, often as we were juggling two careers, mortgage payments, car repairs and playing taxi.
With Jillian, we enjoyed. We slowed down. We had no choice. The blue highways were in full effect, so
we remember when she first tied her shoes and rode a two-wheeler. We recall with precision her high school
graduation, and the moves she made at halftime of basketball games as a member of the JV dance team.
I’ve been asked to speak a little about resiliency. I’m not sure I’m qualified. I think being a parent of any
child requires resiliency. With a child like Jillian, it just assumes a different shape. We were certainly
resilient through Kelly’s high school years. Not as resilient as our cars that he drove on weekends, though.
They still bear the battle scars still.
We were resilient pacing the floors at 2 am on a Saturday night, waiting to see the headlights in the
driveway. We were resilient in our yells, whenever a bad grade appeared on a test or report card. We were
resilient in our demands that he stop being such a slob, even after we discovered the fossilized peanut butter
and jelly sandwich in the bottom drawer of his dresser.
I am not kidding.
Point is, any parent has to be resilient. With Jillian, it was more of a vigilance. As I said here four years
ago, we adopted a few mantras to guide us and see us through. The most adamant of those was, EXPECT
DON’T ACCEPT.
Don’t accept a school system that tries to marginalize your child. Expect them to follow the law. Don’t
accept a society that wants only to “look’’ at your child. Expect a society that “sees’’ your son or daughter.
There is a world of difference.
Looking is a passive act. We look at television. Judgments are cheap and easy when all we do is look at
someone. Human potential is ignored. Ask African-Americans about being looked at.
Seeing requires our participation. It demands that we get beyond a sideways glance or an ignorant stare,
and actually endeavor to know the person in front of us. Those who have taken time to see Jillian have been
rewarded with her compassion and endless positivity. She makes their days. Those who have chosen only to
look at my daughter have missed a real opportunity.
So, we’ve been vigilant. Resilience enters in only when we have been opposed. And truthfully, that has
not been often. It does take resilience when you hear a friend or a public figure use the word “retarded.’’ But
that, too, is less resilience than willpower. Just as when one of Jillian’s special ed. teachers in high school
suggested that Jillian can’t learn. It took a little resilience and lot of willpower not to punch that teacher in
the nose.
You will be discouraged sometimes. There will come a time when the school doesn’t do the legal or moral
thing. There will come a time when your daughter doesn’t get invited to the sleepovers, your son isn’t
picked to play kickball at recess. You will always hear phrases such as “those people’’ and you will always
encounter well-meaning folks who will tell you how “sweet’’ your child is. The patronizing tones never
stop.
My advice is to accept the words in the spirit in which they’re given. Because in the midst of all your
resiliency or vigilance or whatever you choose to call it, you know things those folks will never know.
Jillian knows what’s important. She’s like one of those self-help books. Lots of us spend half our lives and
fortunes chasing happiness. Entire books are written about the chase. Mitch Albom owes his literary career
to it.
Some of us are lucky enough to have the best example, right there in our midst, every day. One time about
three years ago, Jillian and I were in the car, on the way to the YMCA. She was emerging from a tough cold
that had left her coughing and drained. I’d spent a few mornings propping her up in bed, fetching her
Kleenex and soup and generally commiserating as Jillian told me how much she hated her nose.
She was grateful for the attention. I told her that’s what parents do. Then Jillian said this to me:
“If you love someone, they’ll love you back.’’
Life’s essence, distilled to perfection, by someone with an intellectual disability. Allegedly.
Jillian has taught us to slow down, to try hard, to be kind, to persist, to laugh, to love, to linger. She is wise
in the ways of empathy and sympathy. She doesn’t have bad days, she doesn’t complain. Jillian is
unburdened by agendas. She isn’t often jealous, except when Ryan spends too much time flirting with the
neighbor ladies at the clubhouse bar.
I’m writing a book on her life. The manuscript is about done, but for proofing. It will go to my literary
agent in New York, very soon. In the interest of self-promotion – and maybe a little reassurance that this
blue-highway journey is spectacular – I’d like to read an excerpt.
A few weeks after she was born, we received official word from the geneticist that Jillian did, indeed,
have Down syndrome. Jillian owned three copies of Chromosome 21, instead of the usual two. Trisomy 21,
it’s called, the most common form of Down syndrome.
Human cells contain 23 pairs of chromosomes, 46 in all. This was Number Forty-Seven. This foregone bit
of earth-is-round information came with its own sadness. Until then, Kerry and I still held tiny hope that the
earth would be flat.
Number forty-seven has, in fact, been king. But not in the way we might have guessed. We knew it would
limit her intellectually. We understood the physical traits it mandated would have permanent social
consequences. We were ready to make her life as good as it could be.
We didn’t understand how good Jillian would be. In the literal sense.
If you believe there are no coincidences, you have to at least entertain the notion that Number Forty-Seven
has a purpose beyond sadness. If you are anything other than terminally pessimistic, you believe the extra
chromosome has some beneficial reason for being.
Number Forty-Seven contains lots that make 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 Forty-Seven puts out the fires
of ego and envy and vanity and guile. It filters anger. Thanks to 47, Jillian lives a life of joy, giving and
receiving in equal time. Nothing defines her more. Number Forty-Seven isn’t a governor on her aspirations.
It’s an extra storage tank for all her good stuff.
Not long ago, I sat with my mother in the living room of my parents’ home in Florida. She was nearing 80
when we gathered in the sunrise morning, to have coffee. We talked about Jillian, as we have lots of times
over the years. And my mother said this:
“Jillian is the best Christian I know.’’
Elsye Daugherty isn’t devout. She is spiritual. It’s an important part of her life, and my father’s. It isn’t an
important part of mine. So I asked her, “What does that mean?’’
Twenty-three years earlier, a day after Jillian was born, my mother had had a vision of Christ, telling her
Jillian would be fine. I’ve never had a similar experience, nor has anyone else, as far as I know. All our
visions have been self-generated. What has come true has been the result of an all-earthly-angels-on-deck
offensive, not some assurance from on high.
What does that mean, being the best Christian?
“She’s kind,’’ my mother said. “She loves genuinely. She gives. She enjoys life. Do you remember the
story you told me about Jillian on the metro bus?’’
I said yes.
I’d gotten an e-mail from a passenger on the 3X bus Jillian rides daily to and from downtown Cincinnati.
He knew me because of my job. I’d written several times about Jillian. He wanted me to know some things
he saw one winter morning:
Paul,
Just wanted to send you a quick note. I was in a sour mood this morning when my bus didn't
show up so I had to wait an extra 40 minutes in the cold for the next bus to arrive. This bus was
packed, standing room only, but a young woman in an NKU sweatshirt gave up her seat to a
passenger who just got on the bus. Then, this same young woman offered her coat to someone
else on the bus who said she was cold. I overheard someone else talking to her and called her
"Jillian." I struck up a conversation with her about school and the NKU basketball team (of which
she told me she was a manager). I concluded that I just met your daughter. What a terrific person
she is. She brightened the day for me and a few others packed into the bus today because of her
kind actions, and I just wanted to pass it along.
Mike Herrel
“That’s Jillian,’’ my mother said. “She acts like the rest of the world should act, but doesn’t.’’
Jillian not only has those qualities. She inspires them in others. Those who know her are moved to do
better, to be better. To do good. We’re only as good as the way we treat each other. It’s hard not to be good
when Jillian is around.
“You and mom and my brother are my heart,’’ she says. I couldn’t tell you when, exactly. She says it a
lot.
“What about Ryan?’’ I ask. “Isn’t he your heart, too?’’
“Oh, definitely,’’ she says. “Ryan is my favorite boy.’’
To get to Jillian’s heart, simply open yours. If her heart ever breaks, we’ll all be lesser for it.
Maybe that’s what my mother meant.
It’s an intrinsic knowing. Knowing what matters, and what to do with it. Knowing the smallest of joys. A
hug offered, a smile received. Jilllian’s knowing isn’t learned. It’s not inherited. It’s innate. It’s Number
Forty-Seven on her shoulder, riding shotgun. Her nearest angel.
Without Forty-Seven, Jillian isn’t Jillian. Maybe she keeps her seat and her coat and for Mike Herrel, the
day stays gray. She doesn’t change Nancy Croskey’s life or Dave Bezold’s perspective. Kelly Daugherty
doesn’t spend an extra hour on yet another analysis of Hemingway.
Without Forty-Seven, Kerry doesn’t get to express her true calling to its fullest. Motherhood satisfies her,
but it isn’t triumphant. Without Forty-Seven, maybe I forget the feel of Jillian’s hand in mine, as we walk to
the school bus stop. Maybe I never even notice.
I’m not allowed to take life for granted, not for the last 23 years. Forty-Seven did that for me.
Forty-Seven won’t allow Jillian to attend Harvard Law or complete the Sunday crossword in the New
York Times. She won’t drive a car or bear a child. She will draw the occasional double-glance and
misguided wonderment. She will be subject to simple minds and judged by hearts too weak to know.
All this is true and sad and immutable.
Forty-Seven is a soul engine, though. It doesn’t quit. It’s there every time Jillian asks about Grandpa’s
heart or misses Uncle Pete. It’s front and center in her declarations of affection for people and experiences
and life. Forty-Seven is right there, earnest in its simplicity.
If you love someone, they’ll love you back.
Anna Quindlen wrote, “All of us want to do well. But if we do not do good, too, then doing well will
never be enough.’’
Jillian bridges the gap between doing well and doing good. Lots of us do well. We have successful
careers, we make enough money, we live easily, we enjoy a certain physical comfort, and we’re not
especially tolerant when we don’t.
How many of us do good?
A friend of mine once described her grandfather as someone who “lived in quiet appreciation of all that
God provided.’’ No one would describe The Jillian Daugherty Show as muted or much restrained. But the
appreciation part never strays.
That’s Number Forty-Seven at work, I think. I hope. I believe.
Do we need to be resilient when facing the challenges of our special needs kids? Of course. But look at the
rewards. Just look at the rewards.
Thank you for having me here today,