'I'm a nicer human being for being around her'

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Im a nicer human being for being around her

One father's story of raising a child with Down syndrome - and how she taught him as much as he taught her

by

Karen Ann Monsy

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Published: Thu 25 Feb 2016, 11:00 PM

Last updated: Sat 27 Feb 2016, 11:01 AM

The journey to parenthood is quite often fraught with both anticipation and struggle. And the last thing you want to hear when you're finally holding the little one in your arms is that something is wrong. But such was the case for Ohio-based sports writer Paul Daugherty and his wife, Kerry, who only found out that their baby girl Jillian had Down syndrome - a condition typically associated with physical growth delays and intellectual disability - several hours after she was born.

Doctors were quick to tell them everything she'd never be able to do, from riding a two-wheel bike to getting a job and getting married. But that was in 1989. The little girl with the cheeky smile is all of 26 years today - and beating all odds. Jillian learnt to ride that bike, got her high school diploma, works at the athletic department in Northern Kentucky University - and, last summer, married her childhood sweetheart.
It wasn't easy going - but as her dad says in his memoir, An Uncomplicated Life (published last year): it was worth it all. Excerpts from an interview with Paul:
How did you find out about Jillian's diagnosis?
It was the worst news I could've gotten at the end of an already bad day. Jillian was born on October 17, 1989. I had to travel cross-country to get back home (as I was away on an assignment at the time) and reached the hospital quite late, having missed the birth by several hours, unfortunately. I'd later gone home to pick up our three-year-old son, Kelly, to meet his little sister, and just stepped into the house when the phone rang. It was my wife, calling to tell me the doctors thought Jillian had Down syndrome.
What was your initial reaction?
We were very grieved, of course. Conditions like these are usually detected well in advance. You don't get that kind of diagnosis on the day of the birth today, and mums certainly don't get it when they're at the hospital all by themselves. But we got all our grief and anger out, and from day two onwards, we decided to do everything we could to build the best Jillian we could.
Why should we limit her opportunities, we asked. Why should we define her by her diagnosis? We wanted Jillian to define herself. It was what we were going to let our son do, so we weren't going to treat our daughter any different.
What were her growing years like?
Growing up, Jillian essentially did everything every other student did - it just took her a little while longer. She rode her first bike at 12. She learnt to spell words and do her math - even though it took her an hour to learn to spell a word, she still got there in the end. She was very active in school and athletics, and well liked too. In fact, her nickname in elementary school was 'The Mayor' because she knew everyone. Up until the fifth grade, she had typical friends, sleepovers, birthday parties. Then, around the sixth grade, her peers started noticing that she was slower. That's when her world began to change. She stopped getting invited to parties and sleepovers. Kids who used to be her friends were no longer so. It worried me, of course. What's a childhood without a social life, I thought.
Did she ever have any difficult questions for you?
I can think of just one time that I thought was particularly tough. She was in the sixth grade. It was a Friday night. My wife and I were relaxing in the living room, when she came downstairs, crying, and said: "I don't have any friends." She'd made friends with a couple of kids with Down syndrome by then - it was just that her other 'typical' friends had started drifting away.
But then she started attending TOPSoccer, a community-based training and team placement program for young athletes with special needs. And that's where she met Ryan. They became fast friends, started going out, went to proms. and, to cut a long story short, ten years later, got married in June last year.
I'll always remember the day he walked to our door, wearing a suit and bearing a corsage made of cymbidium orchids, and said, "I'm here to take your daughter to the Homecoming, sir.'' That was the day every fear I ever had about Jillian's life being incomplete vanished.
What would you say were the most important lessons you learned during this time?
We lived our lives with three mantras. First: expect, don't accept. That's the difference between settling for mediocre and battling for better things - and it was mostly in conjunction with her schooling. We expected her to be educated the way the law said she was entitled to be, and we accepted no less. Of course, we accepted nothing less from Jillian either, and it put a fair bit of pressure on her - mainly because if we asked for all the stuff she was legally entitled to, and she didn't perform, it'd look rather silly. But she did perform, and we were blessed that way.
The second mantra was: see, don't look. See her for who she is; don't look at her and pass judgement on what she looks like - something that applies universally, I think. Just consider the human potential we've wasted because we've looked at people, instead of seeing them for who they are. But it requires empathy and actual engagement with people to find out who they are.
Lastly, live in the moment. Literally. Do not worry about the past because you can't do anything about it, nor of the future, because you can't control it. All we thought about was what we could do that day. Not only did that help us in guiding her life, but it helped us slow down. It was because of that approach that we enjoyed things with Jillian that we didn't with our son. With Kelly, we were always gunning for the next best thing. But with Jillian, I can tell you of the day she first tied her shoes, what she looked like the night of her homecoming. She allowed us to slow down and see life to its fullest.
Jillian obviously needed you and your wife to keep her going. Where did you guys draw your strength from?
Honestly. her achievements gave us strength. Even though they took longer, she'd get there. For example, there was once when she was about 12 and we were spelling words. The word 'store' was especially hard for her and we spent 1.5 hours trying to get it right. It was frustrating, because after a busy day at work, you don't really want to spend two hours on your kid's homework. But when she finally got it, I literally danced around the room, spelling the word 'store'. So I guess our strength came from her. The rewards we got from Jillian kept us going - and they do to this day.
Why is your book called An Uncomplicated Life? One might say raising a child with Down syndrome is anything but.
It was my editor that suggested the title. I didn't like it at first. To me, it meant that we were telling folks that Jillian was simple - and she's not. She's got a complex life just like the rest of us. But then he explained it. Jillian has her priorities straight; they were about who she loves and who loves her - everything else is secondary. I wish I was that uncomplicated. But it's true. She doesn't clutter her life like we do. She gets mad, but she's not mean. She has no jealousy, no guile. and she's very kind. She never fails to ask about people in our family who aren't doing well, for example. If someone isn't feeling well at work, she'll always take them flowers or a card. She's very conscientious that way.
How has she shaped you as a person?
In so many ways. She's taught me to be more accepting of people who aren't like me - that includes people of colour or with a disability. Her work ethic reminds me that I can do better. She's taught me that things are possible to achieve if you believe. and just to be a better person, overall. I think I'm a nicer human being for being around her for 26 years!
How was her brother with her?
Kelly was perfect with her. I'm not trying to paint this great picture because we really are just a normal family. But Kelly never resented the extra attention that Jillian needed. We tried to do as much together as a family as we could. But the simple nature of Jillian's condition made it impossible sometimes. We did need to spend more time with her homework and athletics and therapy. To his credit, he was never bitter about it. They've got a great relationship going - and Jillian is actually saving up to visit him this summer in New York, where he now lives.
Well, she's really beaten the odds. Did she ever doubt that she could?
A lot of times, people simply don't know what to do around kids with Down syndrome. What would your advice be?
Treat them like you would anybody else. They're far more like us than they are different from us.
And to parents who've just received a similar diagnosis?
It gets better. For us, every day was a little better. It's a lot of work but then, raising children generally is. We had difficulties with Jillian but we also did with our son - they were just different difficulties. My only advice is that you allow your children to define themselves. Don't limit them. Allow them to flourish and you will learn more from them than you could ever imagine. They, somehow, end up teaching you just as much as you teach them.
karen@khaleejtimes.com


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