We crossed a bridge last Sunday, one that I have feared for years. To put it bluntly, it went something like this.
“Dad, am I going to die when I’m twenty?"
The question came out of the blue, and caught me by surprise. It also made me wonder how long the idea had been brewing in my son’s head. Questions like that just don’t pop up for no reason, do they?
We had just watched the Cincinnati Bengals beat the Kansas City Chiefs 36-21 on a clear, sunny Sunday afternoon. We enjoyed listening to the crowd roar, watching the players hit, and eating overpriced cheeseburgers, hot dogs, and soft drinks. The day started out fine. We dressed in our Bengals gear, parked at a distance in a familiar garage we used for Reds games, and walked the long distance to Paul Brown Stadium. We forged our way through a crowd filling the riverfront Banks development with a pre-game block party. We made our way to the stadium, accepted our complimentary Bengals scarves, and then found our seats on the Bengals sideline.
It was a warm day, and we soon realized we were overdressed with thermal long johns and fleece jackets (primarily because the day before was downright frigid in southwest Ohio). Alex made friends along the way, per his usual, including a ticket taker, a program vendor, and fans massed near the restrooms while Dad made a pit stop. It was a great day and a great game, if you were a Bengals fan. We then navigated our way through the crowded team gift shop after the game.
Outside the stadium, we retraced our steps, met some Teenaged Mutant Ninja Turtles dancing and posing for any kid and parent they could hook (for a small donation). Alex experienced drunken fans giving him low-fives as we filed past an open-air bar. We were on top of the world. We joked and laughed as we rolled up several ramps to our familiar parking garage. It was a good day.
Then we began the process of loading into our minivan. The process followed its usual path of lifting Alex higher in his chair, fixing his shirt bunched on his back, fixing his wedgie, and then positioning his legs and straightening his feet, then repeat until satisfaction. When we finished, but before rolling his wheelchair up the in-floor ramp and locking into place, Alex paused to ask me THE question I had feared for years.
Deep breath, Dad. You got this.
“No, I don’t think you’ll die before you are twenty!” Oh, Lord, please don’t ask me to clarify. “Why do you ask? Is everything okay?”
“I don’t know. It just seems like everything is falling apart. My back hurts, I can’t walk, I’m tired a lot….I don’t know, I just worry, because I don’t want to die.”
I’m telling you now, I wanted to cry. Instead, I bent down and held him tight and told him not to worry and that everything will be fine. I had feared the question for years and it hit me at the most unexpected time. THE QUESTION had announced itself after a great day. A fun day. A day that makes life seem somewhat normal, if there is such a thing. I did everything in my power to stay composed and fearless in the face of sorrow. Why now? Why here? Why...period?
The drive through downtown was quiet with probably both of us thinking about what just happened. By the time we made our way onto I-471 through Kentucky, the mood had shifted, thank goodness. We were back to singing songs playing on Alex’s cell phone, telling stupid jokes that only Dads can tell, and reflecting on which Bengal cheerleader Alex thought was the cutest. We didn’t broach the topic again and, to this day, we still haven’t. But I’m sure it will come up again who knows when. Until then…
If there’s one thing about Duchenne that I’ve come to understand, it’s that it makes itself known in your life at the most inopportune times and doesn’t give a damn about you, your feelings, or any perceived inconvenience. You just gotta roll with the punches and take each day as it comes because each day is a story all its own. There will be good days and bad days. For now, I’ll take any day.
“Hey, we had a great time today, didn’t we, Bud?”
“Yeah, we did. Thanks. Can we go to another game sometime?”
“You bet, Bud. You bet.”
“Dad, am I going to die when I’m twenty?"
The question came out of the blue, and caught me by surprise. It also made me wonder how long the idea had been brewing in my son’s head. Questions like that just don’t pop up for no reason, do they?
We had just watched the Cincinnati Bengals beat the Kansas City Chiefs 36-21 on a clear, sunny Sunday afternoon. We enjoyed listening to the crowd roar, watching the players hit, and eating overpriced cheeseburgers, hot dogs, and soft drinks. The day started out fine. We dressed in our Bengals gear, parked at a distance in a familiar garage we used for Reds games, and walked the long distance to Paul Brown Stadium. We forged our way through a crowd filling the riverfront Banks development with a pre-game block party. We made our way to the stadium, accepted our complimentary Bengals scarves, and then found our seats on the Bengals sideline.
It was a warm day, and we soon realized we were overdressed with thermal long johns and fleece jackets (primarily because the day before was downright frigid in southwest Ohio). Alex made friends along the way, per his usual, including a ticket taker, a program vendor, and fans massed near the restrooms while Dad made a pit stop. It was a great day and a great game, if you were a Bengals fan. We then navigated our way through the crowded team gift shop after the game.
Outside the stadium, we retraced our steps, met some Teenaged Mutant Ninja Turtles dancing and posing for any kid and parent they could hook (for a small donation). Alex experienced drunken fans giving him low-fives as we filed past an open-air bar. We were on top of the world. We joked and laughed as we rolled up several ramps to our familiar parking garage. It was a good day.
Then we began the process of loading into our minivan. The process followed its usual path of lifting Alex higher in his chair, fixing his shirt bunched on his back, fixing his wedgie, and then positioning his legs and straightening his feet, then repeat until satisfaction. When we finished, but before rolling his wheelchair up the in-floor ramp and locking into place, Alex paused to ask me THE question I had feared for years.
Deep breath, Dad. You got this.
“No, I don’t think you’ll die before you are twenty!” Oh, Lord, please don’t ask me to clarify. “Why do you ask? Is everything okay?”
“I don’t know. It just seems like everything is falling apart. My back hurts, I can’t walk, I’m tired a lot….I don’t know, I just worry, because I don’t want to die.”
I’m telling you now, I wanted to cry. Instead, I bent down and held him tight and told him not to worry and that everything will be fine. I had feared the question for years and it hit me at the most unexpected time. THE QUESTION had announced itself after a great day. A fun day. A day that makes life seem somewhat normal, if there is such a thing. I did everything in my power to stay composed and fearless in the face of sorrow. Why now? Why here? Why...period?
The drive through downtown was quiet with probably both of us thinking about what just happened. By the time we made our way onto I-471 through Kentucky, the mood had shifted, thank goodness. We were back to singing songs playing on Alex’s cell phone, telling stupid jokes that only Dads can tell, and reflecting on which Bengal cheerleader Alex thought was the cutest. We didn’t broach the topic again and, to this day, we still haven’t. But I’m sure it will come up again who knows when. Until then…
If there’s one thing about Duchenne that I’ve come to understand, it’s that it makes itself known in your life at the most inopportune times and doesn’t give a damn about you, your feelings, or any perceived inconvenience. You just gotta roll with the punches and take each day as it comes because each day is a story all its own. There will be good days and bad days. For now, I’ll take any day.
“Hey, we had a great time today, didn’t we, Bud?”
“Yeah, we did. Thanks. Can we go to another game sometime?”
“You bet, Bud. You bet.”
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