In the summer of 2016, we took a family road trip to the Midwest to see the Chicago Cubs play at Wrigley Field. When you’re the parent of two elementary-age boys, eleven and eight, 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.
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 my son William’s school, 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 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?”
(Thank God for hotel swimming pools. Add that to the list of requirements for our family to visit your town.)
We talked for a few minutes. Will’s brother, Sam, talked Matthew’s ear off about all we had done on our trip so far, and Matthew patiently listened. He asked about whether we have “programs” for Will where we live. We replied that we are blessed to live in Midland, Texas, where there are rehabilitation centers, church ministries, and schools that lovingly serve children with physical and intellectual disabilities. Even in Evanston, a college town of several thousand people in a metropolitan area of millions, programs for people like Matthew and William can sometimes be few and far between. Luckily, Matthew had helpers in his community who got him involved in sports.
Talking about sports reminded Will of swimming again. Matthew smiled, stood up, and said, “It’s nice to meet you, Will.” It wasn’t just his politeness that struck me; it was his thoughtfulness and concern about Will’s situation that gave me hope. Somewhere, sometime ago, somebody helped Matthew become the man he is today. They intervened.
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 will 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.
* * *
You might feel that way reading this book. These essays were written over a five-year period as I began to work through the implications and realities of being the father of a son with Down syndrome (and of a son who doesn’t have that condition).
I’m not sure why I chose to convey my thoughts through essays rather than a different genre, like poetry or song. I teach writing and literature at a midsized public university, which means I read hundreds of student essays every year. It also means I read books that no one reads anymore, but as C. S. Lewis said, the “clean sea breeze of the centuries blow[s] through our minds” when we read old books, leading us out of the assumptions that our own era takes for granted.
Indeed, you’ll see quite a bit of C. S. Lewis’s writings mentioned in this book. I am writing another book, a scholarly work, on Lewis’s views on war. As for these essays, they were written on weekends and late nights when I was tired of reading student papers, or when the boys had finally fallen asleep, and I could not read one more page of dry, scholarly prose about just-war theory. I didn’t initially think of compiling them into a book. In fact, some of them were never intended to be published at all. At times I would post these essays in my blog or as Facebook posts, but sometimes the audience was just me and, I suppose, the Lord.
It wasn’t until I met Matthew that I began to gather them into one place for parents, family, and friends who might be asking some of the same questions I have about the joy of raising a child with special needs. Perhaps these writings will also speak to anyone who has ever tried to practice what Richard Baxter called “the art of suffering” or attempted to understand the will of God.
Most were originally written as attempts to crack open deeper meanings behind the physical, emotional, and spiritual hardships of raising William. Maybe it sounds like I was writing a diary, but that’s not entirely the case. Often I would write an essay over the span of a day or two, but only after I had spent months meditating on certain experiences, texts, movies, songs, and Scriptures that the Lord placed in my path. When I shared these stories on social media with my friends, I merely was motivated by the joy of finally figuring something out, or more basically, of finding the Lord in the process of figuring it out.
But Matthew reminded me that I can’t keep these things to myself. People need interveners—intercessors, if you prefer a more familiar biblical term—who step into the gap and say, “Hey, did you know we share this?” Or, “Did you know there’s a deeper meaning behind this?” Or most importantly, “Don’t worry. It’s gonna be okay.”
I’ve dedicated this book to my younger son, Samuel, who is eight years old and would, at the moment, rather read The Chronicles of Narnia or Harry Potter than anything I’ve written. But I hope that someday he will read these essays, the last one in particular, and find as much hope and wisdom in reading them as I have discovered in writing them. That is also my prayer for you. Whoever you are, whether you know it or not, you live in a community of people with disabilities, and I pray that through this book, you will see them, and perhaps yourself, as God sees us: children of a loving Father.
* * *
Before we left Lou Maltani’s that day 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. By the end of this book, I hope you will know it too.
Introduction to Will: Parenting at the Crossroads of Disability and Joy, by Clark Moreland