This was Alex’s first Ohio State football game, and the collegiate scene could not have been better. The sun was shining with not a cloud in the sky. The air was cool and crisp, with a steady breeze. The leaves were just beginning to turn color and prepping to fall. The Goodyear blimp floated quietly above. Students enthusiastically welcomed us from the balcony of the Varsity Club as we drove onto campus.
Late to arrive, we parked on the top level of an eight-story parking garage. We rode a packed elevator down to street level and then navigated our way through a sea of Buckeye fans moving in mass towards the stadium. From his wheelchair, I’m sure Alex saw nothing but backsides. But, he didn’t care. He was in his element…people everywhere!
The scene outside and inside Ohio Stadium was alive! We strolled by tailgate party after tailgate party, equipped with tents, banners, and flags flying high. Grills were sizzling. Music and pregame commentary blared from speakers. Beer taps and red solo cups were abundant. Aromas of burgers, brats, and hot dogs filled the air, as did many enthusiastic shouts of Go Bucks! and O-H!...I-O! as we rolled along.
We witnessed fans of all varieties from future football stars in Buckeye onesies to graying Alumni. We chatted with many fans, including the scarlet and gray face-painted super fan, Big Nut. We tailgated along Woody Hayes Drive with old college friends and their families, reminisced about our bygone days of college football, and then caught up on the thirty-plus years since we last saw one another. Before long, Alex and I made our way to our alpine-level seats in the stadium, where we could practically see every one of the 100,000-plus football fans dressed in various shades of red.
It was a beautiful day to be a Buckeye fan!
The stadium buzzed with anticipation. TBDBITL pumped up the crowd, marched across the field, and then scripted Ohio. When the Buckeyes ran onto the field, Alex experienced how few events compare to major college football. It’s loud. It’s spectacular. It’s the heart and soul of a community.
High up, Section 33B offered us the entirety of Ohio Stadium. Immediately below, sat thousands of students, screaming, dancing, and drinking. Around the horseshoe, adults and alumni sat absorbed in the action with utmost attention. We watched with amusement as some shook their heads and threw their hands in dissatisfaction of the Buckeyes passing attack, but then nodded with clairvoyant wisdom for each score. On the field, we saw OSU head coach, Urban Meyer, drop his head in disappointment before his team finally hit their stride. Players, coaches, trainers, officials, bandies, recruits, reporters, photographers, cheerleaders, mascots…you name them, they were all there scrambling and jockeying for position on and around the field.
Alex enjoyed himself thoroughly, just as I imagined. He watched with delight as Brutus the Buckeye did push-ups after every score. He enjoyed hot dogs with mustard and ketchup. He chatted with ESPN cameramen, stadium ushers, elevator attendants, security personnel, and OSU and Indiana fans standing or sitting around us. He celebrated scores with the wiggle of his hands. He shook his head in amusement at the silliness of students’ behavior below. He replied Daaaaaddd whenever I jokingly told him YOU’D better not ever act like that!
Still, amongst the pomp and circumstance, the expansive view from Section 33B led me to daydream. I wondered if Alex saw the thousands of college kids, many only a year or two older than he, standing and cheering before him. How could he not? Surely, he saw them standing on the bleachers, jumping up and down, and waving their arms wildly for reasons they probably didn’t understand. Surely, he heard them praise officials for bad calls against their beloved Buckeyes. Surely, he saw them push one other in euphoria and celebration for every Buckeye score. Surely, he saw them having the apparent time of their life.
I sure did.
The scenes reminded me of scenarios I’ve dreamed over the years (and, admittedly, still do) as we raise a son with Duchenne. I couldn’t help but see the football players and think back to my paternal dreams of raising a young man in helmet and pads. I couldn’t help but see the students sitting before us and dream about Alex attending college, living on his own, and learning the constant balance of books, girlfriends, parties, and sleep. I couldn’t help but notice kids hopping down the aisles for a quick jaunt to the restroom, and think of the cumbersome and time-consuming effort it is now for Alex to simply use the restroom. I couldn’t help but see the students high-five one another and think how Alex resorts to arm-rest fist-bumps because he cannot lift his arms. I couldn’t help but notice the students stand and stretch, and think how Alex’s body must scream for movement after sitting in his wheelchair for sixteen long hours. I couldn’t help but feel a sense of loss for things he may never know or experience, things that many of us take for granted. I wondered if he had longings for the life spread before him. Life without Duchenne.
Maybe it’s just me.
That’s when I shook off my daydream, looked to Alex, and realigned myself. Amid the crowd noise and colorful college football fervor sat a boy simply enjoying life despite his ever-worsening physical challenges. He wore a hooded OSU sweatshirt to protect him from the wind, with its drawstring pulled tight so that only a small circle of his face remained visible. He had mustard clinging to the corner of his mouth and a few bread crumbs scattered across the front of his sweatshirt. He sensed me staring, turned, and then flashed his beautiful smile.
If he had dreams of football or college life or girlfriends or any other such collegiate activity, he didn’t show it. He was content living his life, sitting with Dad, and watching football. He enjoyed smiling and imperceptibly waving to girls, eating hot dogs, and befriending sullen Indiana fans. That day, the world beyond his reach didn’t seem to faze him as it did me. If it did, he didn’t mention it. Instead, he simply loved the life he lived.
I took note.
As I have learned and as the football game last weekend magnified, with Duchenne comes perspective. It willingly encourages you to observe and reflect on life, as it teases you along the way. It holds no concern where you’ve been, where you are, or where you are going, because it dictates the pace. It holds no worry you’d ever leave, because it knows you can’t. It holds no concern it will intrude on your life, because it simply will. But, as much as Duchenne contains and restricts and never lets go, Duchenne allows you to see a beautiful world you may have never seen before. You see beauty in people of all types. You see beauty in the colors, smells, and sounds of life. You see what matters and what doesn’t. Strangely, in that peace and in that moment sitting in Section 33B, I thanked Duchenne. Without it, I’m not certain I would have ever held such perspective.
Alex could care less about what he didn’t have. He cared more for what he did have. He had tickets to an OSU football game, with his Dad, on a beautiful Saturday afternoon. He had a game day program and a couple of hot dogs with mustard and ketchup. He met new friends who took the time to laugh and smile along with him.
What more could you ask?
Spread before me was life as I once knew it.
Sitting next to me was life as I now live it.
…and it's beautiful.