Hey! There’s my friend from my Science Fiction class!
Mom, the Wolf mascot waved to me!
Hey, look at that! My old science teacher is a football coach!
Dad! I’d like a hot dog…with mustard and ketchup please!
We have prime viewing at these events, too! Each game, we sit in the designated handicapped accessible seating area located in front of the stadium. Although the stadium is state-of-the-art, you can tell someone designed the accessible seating with the grandparents in mind as the seating is separated from the wildness of students coming and going throughout the game. The accessible seating area includes a long gradual ramp, space for wheelchairs, and companion seating. All must-haves, if you ask me! Yet, for the student…the handicapped student (and parents) sitting apart from his peers and friends, such seating can be isolating. That’s when the unexpected, kind words of another can make all the difference.
As if living with Duchenne is not challenging enough, accessible seating often adds salt to the open wound of life with disability. From where we sit, Alex sees his friends at the far end of the stadium, in the student section. He sees them jumping, cheering, and throwing powder in celebration of every score. He sees them standing and having the apparent time of their lives and plotting where to go after the game, while he sits with Mom and Dad…and someone else’s grandparents. He sees cheerleaders throw small plastic footballs over his head and high into the stands, oblivious to the open hands resting on his knees. He sees his friends and peers uniformed and competing on the field below as they enter the prime years of their lives. He sees vitality everywhere.
We sure do.
While I try to distract myself with the action on the field, coaching strategies on the sidelines, or a player’s technique, Alex swivels his head for connection beyond just Mom and Dad. Throughout the game, he scans the crowd of thousands for friends, parents, or teachers he hasn’t seen in a while. During halftime, he hopes to catch their eye as they walk by lost in conversation towards the concession stand. After the game, he sees players bro-hugging, cheerleaders being hoisted on shoulders, bandies dancing and trumpeting impromptu rhythms, and proud parents congratulating their exhausted sons or daughters, as the community gathers to cheer and sing the school alma mater and fight song.
The atmosphere at West Clermont is alive! It’s electric! It’s nostalgic.
It can also make you feel the weight of Duchenne as you notice life beyond your son’s reach. It’s tough. You think about your lost dreams. You think about the life you thought you’d lead. You think about many things unrelated to the game, as you lift him back and reposition him in his wheelchair while the crowd roars for a touchdown.
Nonetheless, we’ve lived with this monster long enough to know how to deal with it. We know what to say and how to support Alex’s tough questions about Duchenne. We’ve had difficult conversations about life and death, enough to know they’ve only just begun. We understand the heartbreak of teenaged years. We understand the reality of Duchenne. We live with it every day.
But, we still feel it. We see it. We hear it. It’s everywhere.
Perhaps it’s sports in general. Perhaps it’s the strength and speed of athletes. Perhaps it’s the youthful energy we dreamed Alex would experience. Perhaps it’s a reminder of the life with Duchenne. Perhaps it’s a reminder of life without it. Perhaps it’s just us. Perhaps it’s just me. Regardless, Alex seems not to let it bother him. We should take note. He has much to share.
I say this because as his caregiver, sometimes I am blind to the lesson though he lays smack before me waiting to be turned or fed or comforted. Sometimes I don’t realize the gift Alex brings as I dress, hoist, and position him every day and night. Sometimes I don’t see the beauty of brushing his teeth, combing his hair, or helping him use the restroom at any and all hours. Sometimes the daily grind of Duchenne overshadows the daily message it delivers. Sometimes, I cannot see the forest for the trees.
And, sometimes, all it takes is a simple text to remind me of the love this young man brings to the world. For that, I am forever thankful.
I say this because, late one night, after a tough West Clermont loss, a friend of Alex’s sent him a text message. It was unexpected, but so needed on many levels.
The message went like this…
(disregard the lack of punctuation…it’s a generational thing)
Alex: “Nice game tonight man (thumbs up emoji)”
Brendon: “Thanks for coming you’ve made my senior year amazing and I can’t wait to make even more memories and laughs with you bud you’re literally an inspiration to me with how positive and how happy you are every day and the positive outlook you have on life I strive to be as happy as you are every day Alex you’re an amazing kid and I’m so so so so happy that we met this year I hope that we can hang out every weekend and make awesome memories”
I'm glad others see it. I'm equally glad to be reminded of it. I am especially glad his peers see it.
Alex only met Brendon a couple months ago in school. The young man is incredibly fast and talented…and a team captain. His message is a reminder of the effects we have on one another, despite our limitations. It’s a reminder that life is not about the game, crowd, cheers, or score. It’s not about the past or the future…it’s about our support for one another right now. It’s about the smiles we share and the hope we give. It’s about living with love. It’s a reminder how we can all make a difference to one another.
Alex still beams with pride and joy when he shows me that text…as do Kristy and I.
A timely text indeed.
After the game, as the stadium empties, we always linger to watch the players, coaches, bandies, students, and parents gather on and then depart from the field below us. It’s a quiet moment for our little family as we avoid exiting crowds and parking lot congestion. As a consequence, we are generally alone in the accessible seating area and among the last to leave the stadium as they turn out the lights. While we wait, we’ll ask Alex if he wants to head down on the field, to be a part of the energy, to see the players and coaches…to be a part of the crowd.
He’ll consider it, look to us, and then open his hand to hold.
“No, thanks. I just want to stay here with you!”