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THE BRIDGE

10/9/2015

21 Comments

 
Picture
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.”



21 Comments
Jan C.
10/10/2015 06:49:49 am

That's a rough one, Dave. I think you gave a great answer. I was literally just listening to an audiobook featuring Deepak Chopra, a Harvard educated medical doctor who often talks about the power of the mind to create our reality. He was telling of a patient who, statistically, had a very good chance of a negative outcome. But then he explained that statistics are just numbers that describe an average. Knowing what the average income of people in Cincinnati is does not tell anyone what my income is, and so on. Knowing what that Duchenne coexists with Alex and knowing how that proceeds for most tells you nothing about how it's going to go for him! My sister had a stroke at age 21, and at the malpractice trial, expert witnesses testified that her likely lifespan would not go beyond age 40. But they did not know my mother, who was willing to think outside that box. Jane is 64. I have no idea how long she'll live. All I know is, if you'd have asked my mom back then whether Jane would die when she was 40, she'd have looked you in the eye and said, "hell no," and she'd have been right, wouldn't she?

Reply
David Click
10/12/2015 11:32:47 am

Great perspective. Thanks, Jan!

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Kathy Nickel
10/10/2015 09:04:14 am

Oh Dave, I think of you often and you give me strength. I live each day with the acute fear of receiving a call informing me that my beloved son has died from an overdose. Sadly drugs are highly available in prison. Still, I can hope that Nate will gain the strength and wisdom to overcome. There must be no greater sorrow than knowing and having to witness the decline and eventual death of ones child. There are no words.

It seems Alex knows his fate. This is indeed a new chapter.

Wishing you wisdom, strength and peace.

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David Click
10/12/2015 11:36:59 am

Thank you for your support, Kathy! Wishing all the best for you and Nate! Your support for him is inspiring!

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Missy Bastin
10/10/2015 10:00:21 am

Wow, you got me again! I can not even imagine that moment, how you could have chosen to fall to the ground and cry but you pulled it together and did what any good dad would do, start with a hug!! You are a GREAT dad and Thank God Alex has you to continue to fill him with strength, as he does you! Alex and your family are in our prayers and Alex's smile fills my heart every time I see him! Prayers for continued strength for all of you! We hope to see him again soon! Love to all, The Bastin's

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David Click
10/12/2015 11:38:06 am

Thank you, Missy! I appreciate your support!

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Kim Fehrenbach
10/10/2015 03:25:04 pm

Dave, I think you are the best dad......ever! What you and Alex has is truly a blessing. I feel extremely lucky to know you and your wonderful family..God bless

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David Click
10/12/2015 11:40:04 am

Thank you, Kim! Your family, and our adoption connection, is special to us!

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Deacon Dave Shea
10/10/2015 05:15:39 pm

Thanks for sharing such a profound conversation on such a tough subject. My grandsons sometimes ask me how long I'll live and I always say, "a long time - I'll be here for your college graduations and I may even do your weddings." It's my way of saying, "Don't worry." But that is very different from your conversation with Alex. Thanks - praying for Alex and all of you.

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David Click
10/12/2015 11:41:14 am

Thank you, Deacon Dave!

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Bill Salm, Jr
10/10/2015 08:22:13 pm

David,
You are a very good father and man. All the best to Alex and you.

God bless you both.

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David Click
10/12/2015 11:41:57 am

Thank you, Bill! All the best to you and yours as well!

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Ben Iden
10/10/2015 09:21:19 pm

I admire your courage and Alex's. I often think some things feel tough until reminded of the big life questions and what is really important. Always in my prayers. I was there that day too. It was a great day.

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David Click
10/12/2015 11:43:27 am

Thanks, Ben! I appreciate your support. And, as Dave Lapham says, "it is [was] a great day to be a Bengal!"

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John Schmidt
10/11/2015 11:37:32 am

I'm still reading The Cave, Dave and then to see what you and Alex go through on a daily basis is simply overwhelming. You have always impressed me as being the better man among us

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David Click
10/12/2015 11:45:16 am

Thanks, John, but that is debatable! YOU are an amazing father and man! Thank you also for reading The Cave. When you are done, I would love to hear what you thought of it.

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Rick Kenter
10/12/2015 02:28:56 pm

Dave:
Being the father of two sons, I know how important those trips to the games are and how important they were and continue to be in forming our relationships. Those times are indeed great times. However, with my sons, I have never had to answer the question you were asked by Alex. I am always impressed by your posts, and how you are dealing with this disease. For what it is worth, I think the way you answered the question was fantastic! You are clearly a great father, and I hope you never doubt that.

Reply
David Click
10/12/2015 04:02:47 pm

Thanks, Rick. That means a lot. Know that I am still trying to plan a Thursday visit to see you guys sometime. Just haven't found the time yet with Alex's home instruction (school). First opportunity we get when his "school" (i.e., HI teacher coming to the house), I'll let you know. Thanks again and hello to all.

Reply
David Click
10/12/2015 04:04:31 pm

...when his "school" is not in session...

Paul E Marcum
10/12/2015 09:35:27 pm

Hello Dave. I read the above blog and thought about what a good man you are. If your son wants to talk about mortality again, you'll know what to say. My personal philosophy is to live like tomorrow is my last day or like I'll live for 20 more. I have DMD and I've made it to 48. I, like everyone else, don't know the time of my passing. So always say I love you, never sleep on a disagreement , and make good memories .

Reply
David Click
10/13/2015 12:02:38 pm

Thank you so much, Paul. YOU and your perspective are inspirational!

Reply



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