This evening I had the privilege of speaking at the Chukkers for Children event, sponsored by Anadarko and benefiting Bynum School. You guys have already heard some of these stories, and maybe the audience had too, but I told them anyway. Here were my remarks:
Good evening. My name is Clark Moreland, and my son William is a student at Bynum School. William is twelve years old, and in many ways, he is your typical pre-teen American boy: he thinks he knows everything, he’s eating us out of house and home, and he finds it necessary to tell us every time he passes gas. Or for that matter, when anyone does. And it’s hilarious. He loves his younger brother Sam, but he loves his dog, a 100-pound black lab named Chief, even more. Two stinky adolescent boys and a big dog…I tell ya, God bless my wife, she lives in a frat house.
But unlike most boys his age, William has Trisomy 21, a genetic disorder and type of Down syndrome which copied an extra 21st chromosome into every cell of William’s body. As my friend Jared Blong likes to say, Will is turbocharged. He does nothing in moderation. He relentlessly pursues his will (he was aptly named), without any pretense or hesitation. He sets his heart on a goal, and no one will stop him. And he loves, fiercely.
William was diagnosed with Down syndrome when he was eight days old. We learned of his diagnosis in the neonatal unit of the hospital where William would spend the first three weeks of his life, hooked up to heart monitors and a feeding tube. The doctor, who didn’t have much of a bedside manner, bluntly delivered the news, coldly apologized, and walked away as we fell apart over William’s crib. But before she departed, she mentioned that one of the typical characteristics of people with Down syndrome is “low muscle tone.” I’m sure she told us about other developmental delays or symptoms, but that’s the one I remember, only because of how wrong her prophesy turned out to be. William is the strongest person I know. I don’t just mean his personality or will; he also has tremendous physical ability. The kid’s a tank: he has the broad-shouldered build of a swimmer and the wiry energy of a gymnast. Maybe I should teach him polo? Regardless, he loves physical contact. When Will hugs you, he hugs you. And this brings to mind a story.
This year we moved into a new, two-story home, in a sort of swanky neighborhood. I admit I was eager to make a good impression on our neighbors. I didn’t want them to find out too soon that, in fact, the circus had moved into town, and I was the ringleader. But my plans were soon thwarted. About a month after we moved in, one evening we were finishing up baths for the boys, when the doorbell rang. Upon answering, I discovered a middle-aged man who introduced himself as our next-door neighbor. “Oh, I’m so glad to meet you. We’ve been meaning to come over and introduce ourselves.”
“Yes,” he replied, “I don’t quite know how to say this, but did you know your dog is on your roof?”
I turned and in astonishment I saw our 100-pound black lab, standing on a steeply-pitched roof above our garage, next to a window that someone had left open. He was barking at…I don’t know, the moon.
He knew he was in trouble. He scurried back to the window and squeezed his fat butt through, just as I heard Samuel cry from the other window, “Hey Dad, did you know the dog is on the roof?”
And at that very moment, I heard the door open. In that split second, I prayed, “Lord, please let Will have underwear on.”
He did, though that was all he had on. William passed by me and went straight for the neighbor. “Hi there!” he said in a cheerful voice. “Hug please?” Our poor neighbor didn’t know what hit him. Had it been an NFL play, Will would have been called for unnecessary roughness. As he recovered, with Will’s arms still around him, my neighbor chuckled and said, “Well, welcome to the neighborhood.”
Jesus take the wheel.
But I’m happy to report that our neighbors have come to love and accept Will. I’m not surprised. William was born and raised in Midland, and in many ways embodies the spirit of our community. We are a stubborn, self-reliant, resilient people, but we also are a generous community who protects and cares for those who need it most. I’ve been to enough of these events to realize that the people who give are those who are already giving their money and time to Bynum and several other worthy causes. I’m supposed to be delivering the school’s wish list tonight, but before I do, may I just say thank you? We thank God for you and the support you’ve already given to our wonderful school. Midland is so fortunate to have Bynum. And if you’ll permit me, that brings to mind another story, which I tell in my book, Will: Parenting at the Crossroads of Disability and Joy.
A couple of years ago, we took a family road trip to the Midwest to see my favorite baseball team, the Chicago Cubs, play at Wrigley Field. When you’re the parent of pre-teen boys, your summer vacations are organized around places where baseball is played and food is served. We had two requirements for stopping in a town as we travelled up the Mississippi River Valley: (1) it had to have a park, and (2) it had to have a Chick-Fil-A. Everything else was optional.
But when we finally made it up to Chicago—Evanston, to be exact—we discovered that northern Illinois is not as enamored with Chick-Fil-A as we are out in West Texas. But they do have pizza, and boys are usually okay with that choice. My sweet wife, Carrie, had never had genuine Chicago-style pizza before. So we searched for the nearest pizzeria to our hotel and were directed to a place called Lou Malnati’s.
And that’s how we met Matthew.
Matthew is the maître d’ at the restaurant. I happened to be wearing a T-shirt that day from Bynum, celebrating March 21 (World Down Syndrome Day), which said, “Keep calm: It’s only an extra chromosome.” As Matthew was seating us and handing us menus, he said, “I like your shirt!” Carrie and I just looked at each other and smiled.
A few minutes later, after we had settled in and had our order taken, he came back over and said, “May I ask, does your son have Down syndrome?” Carrie said yes, and Matthew introduced himself. Then he turned to Will and said, “Hi, my name is Matthew. Did you know we share a disability called Down syndrome?”
Will replied, “Swimming pool?”
(I don’t know why he said that. But thank God for hotel swimming pools. Add that to the list of travel requirements for our family.)
We talked for a few minutes. Matthew asked whether we have “programs” for Will where we live. We replied that we are blessed to live in a community with Midland Children’s Rehab Center, or the SHARE respite ministry. But of course, what mainly came to mind was Bynum. Even in Evanston, a college town of several thousand people in a metropolitan area of millions, schools and quality educational programs for people like Matthew and William can sometimes be few and far between. I came to realize just how extraordinary Bynum really is.
We probably wouldn’t have said anything to Matthew had he not intervened in our lives. Wherever we go, Carrie and I are always keeping our eyes open for people with Down syndrome. Usually it’s me, nudging Carrie at a restaurant or a park and whispering, “Does that kid have DS?” We never just go up to a person and say, “Hey, do you have an extra twenty-first chromosome?”
But Matthew can do that, and I hope someday William will also be an intervener, a man who could step up to a young kid and say, “Hey, we share a disability.” I love the way Matthew phrased it: they share Down syndrome. What an incredible bond that must be. The rest of us are only looking in from the outside.
Even so, we can do our part. As we look at the wish list, I would point out a few items that caught my eye. Notice under “Community Based Instruction” how we are looking to get Bynum students outside of the school walls. I love how many field trips Will gets to go on. Not only is it good for students with special needs to learn social skills, it is also good for the rest of Midland to see, interact with, and even be served by these precious gifts from God. Can you imagine the joy that a lonely grandmother gets from seeing William walking up to her door with a Meals on Wheels delivery? But transportation and gas are expensive, folks.
Likewise, we need families to step up and support their neighbors who require tuition assistance. My heart breaks to think of it, but I know (and I say this as the son of public school teachers, and am myself a professor at a public university) I know that there are kids with special needs in Midland who ought to be attending Bynum School, but cannot afford it. I’ve won several teaching awards, but I’ll tell you, I can’t hold a candle to the talented, innovative, loving teachers that serve my child. There are kids in our city who need what Bynum offers. Imagine how you could change an entire family’s destiny by helping pay their child’s tuition.
And my goodness, have you seen the magnificent art work that students in the Mneme program have painted? We have one of William’s Mneme paintings hanging next to a Matisse print in our house, and I guarantee you, most people can’t tell the difference! Or the beautiful poinsettias that Bynum sells every Christmas. William has some of that West Texas farmer in him, and you ought to see his face light up when he sinks his hands in the dirt, and watches a seed grow into something more. A garden is a magical place.
But if I may be so bold to suggest one other way you might choose to become involved, in addition to writing a check. Come out to the school. See what your money has already bought: a state-of-the-art, intelligently designed, gorgeous campus. See how the students already love their new school: I know Will certainly does. Go visit Kara Claxton in the vocational program, and watch as her smile breaks every cynical bone in your body. Go check in on Peyton Abney: I tell you, that sweet girl will talk your ear off. I love to hear her stories. And if you’re lucky, you might even get a hug from Will.
You know, as we were leaving Lou Malnati’s on that day back in Evanston, I noticed a man—he looked like the manager—come out from behind a kitchen door. Matthew turned around and gave him a powerful bear hug. I was reminded of how Will loves to be held tightly; like many people with Down syndrome, the pressure on his muscles and bones gives him comfort. Then it hit me: that kind of embrace is the one a son gives a father. I know that hug. I guarantee you, however much you give tonight, if you get that kind of hug from Will, you’ll come away thinking you got the better end of the bargain, just like my neighbor did.
What a privilege to have neighbors such as you, interveners who share in the care and support of Bynum School. God bless you and enjoy your evening.