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HIS NAME IS ZACH

7/29/2015

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We should all be so lucky to find a good friend, one who stands by you without judgment, expectation, or concern for reciprocation. We should all be so lucky to find one who gets you and never raises the bar, one who understands you for whom you are without trying to change any of your quirky habits, interests, or inabilities. In his short sixteen years, my son Alex has been fortunate to have found such a friend. His name is Zach.

Let me introduce you.

Zach is athletic, handsome, and quick to smile, and comes from a wonderful and loving family. He devours all things sports, especially basketball, and someday dreams to play in the NBA. He is caring, quick-witted, and loves to laugh…and prank (he loves to hide around any corner in hopes of startling you, and then saying I got you!). He also loves cheeseburgers and a Coke for nearly every meal, though will venture occasionally outside the lines to a double cheeseburger and a Sprite. But, most of all, Zach is kind, considerate, and respectful, and overlooks all disability, including the constant challenges of Alex’s Duchenne Muscular Dystrophy. Zach’s future is bright, and this week I had the privilege of watching him walk alongside Alex as only good friends do.

These boys known each other for nearly ten years, and their relationship continues to inspire. Like any friendship, they experience their ups and downs, but when their friendship hits its stride…well, it is something special to see. This is one of those weeks!

We call it Dudes Trip 2k15. Just Alex, Zach, and I for a week in Orlando, Florida, doing what dudes do. Nothing planned until we wake up, which for the boys is often late in the morning. No bedtimes or curfews. No worries of smells (no need to say more), belches, or unsightly messes. We take each day as it comes and stretch it as far as we can. But, it is Zach’s ability to stick by Alex’s side, despite the countless surrounding distractions, that make this Dad smile.

Instead of eagerly pointing to the next roller coaster or water slide, Zach graciously tells Alex “No way, dude! I don’t want to go on that ride!” Sure, there may be some truth to the statement as Zach is not fond of heights, but you know deep down that Zach wants to ride, or at least give it a try. All kids do. You know he must feel some loss for not experiencing the thrill. But, he walks alongside, showing no regret, resentment, or longing. His only visible emotion is his want to laugh with Alex. If Zach does secretly yearn for the attractions, you wouldn’t know it from looking at him. Instead, he rests his hand ever so gently on Alex’s wheelchair and walks alongside. He disregards intrusive stares from the endless supply of kids who seemingly have never seen a kid in a power wheelchair. He ignores stares from equally ignorant adults. He is perfectly content walking with his friend, asking Alex if he needs anything, or scouting for shows or accessible rides (very few) that Alex can enjoy. Can you ask for anything more in a friend? Especially one who is only sixteen?

Zach helps to make the trip fun, too. He entertained us one night with his bottomless stomach at Perkins, where his many plates covered half of the table. While Alex (always the more social of the two) chatted up the overworked waiter who had to serve and bus our late night hunger, Zach continued to shovel. By meal’s end, the waiter was laughing with us and we were in awe of Zach’s talent.

Zach encourages fun as well. Late one night he displayed his ability to dodge the many 2AM sprinklers along International Drive, and then persuaded Alex to try the obstacle course as well, knowing the improbability. The resulting head and shoulder water blasts that Alex endured were a sight to see. But, the smiles on their faces and shared hysterics were priceless.

The boys also behaved as typical teenagers do with sideways glances towards passing girls, followed by silent expressions of awe. When they were a safe distance away, the boys would then hoot and howl about their lost chances with such beauties. Throw in a few teasing comments from Dad, and those moments were quite the male bonding experiences.

But, more importantly, when it comes to the needs of boy with Duchenne, Zach gets it. He never complains of inconvenience or unpleasantness when Alex “needs privacy.” He helps where he can and retrieves anything beyond Alex’s reach (i.e., everything). He speaks of unfairness anytime he sees something inaccessible to Alex, but accessible to others. He questions why sidewalks are uneven for Alex’s chair, why cars park in van accessible parking spaces. He understands Alex’s need for loading/unloading on parking stripes and the hardship of having to park remotely. He questions the unfairness of inaccessible rides at Disney and Universal Studios. He carries food trays whenever asked.

He gets it.


Now, after a long day at Disney, Alex and Zach are lying in adjacent beds, wide awake, and watching comedy videos late into the night. Their laughter fills the hotel room, if not the entire hotel. Although a call from the hotel management may come at any moment to quiet the boys, nothing but a smile is on my face as I write. THAT is what life is about. Bonding moments with a buddy. No worries. No judgment. No concern for the future. Just laughter and an eagerness to share and stretch the day as long as possible.

We should all be so lucky to find a friend like Zach, someone who stands by your side even if you are sitting, walks by your side even if you cannot, and laughs with you simply because he enjoys your company.

Truly a special kid.

His name is Zach.


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RECALCULATING...

7/19/2015

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Chances are your life will not go exactly as planned. Even with your best, it's a near certainty you will face headwinds, hardships, or obstacles along the way that force you to change course. If you haven’t experienced this already, just wait. For us, this inevitability is best described by the word recalculating. You know, the mechanical GPS voice that speaks when your direction unexpectedly changes and a new course is established (to the same destination, no less).

Our experience began on a summer afternoon when our son, Alex, was three years old. Out of the blue, something called Duchenne Muscular Dystrophy entered our lives and sent us headlong down unknown roads, some twisting, some straight, all unfamiliar. In an instant, my lifelong dreams of little league practices and games, water parks and roller coasters, and high school or collegiate sports slipped away. Dreams of teaching my son how to drive, vacationing at the beach, and hiking wilderness trails vanished. Just like that. The day simultaneously broke our hearts and gutted our dreams, and our journey was just beginning.

Recalculating…

The moment was surreal at best. Kristy and I answered the call simultaneously on different phones – she upstairs, me down. On the line was a Cincinnati Children’s Hospital neurologist. After early pleasantries and other small talk, we settled into the purpose of the call. We sensed something amiss and sorrow in her voice. We then listened in shock as she described our son’s condition. We were speechless. This cannot be happening. We’re dreaming, right?

We had taken Alex to Cincinnati Children’s Hospital for neurological testing because he was clearly behind in gross motor skills development. While his friends ran about, Alex struggled to keep up. He waddled, tripped, and fell…a lot. He could not climb stairs without extreme effort. He could not rise from the floor without pushing off his knee. Something was clearly not right. Kristy saw it first. Or at least she was the first to verbalize his struggles. I saw it, too, but rationalized that Alex was just behind the curve because of his Romanian birth. He would come around, I told her and convinced myself. Be patient. Just look at those calves! They’re so big and strong! (note: enlarged calves are a telltale sign of Duchenne. However, it's not muscle that makes the calf so large, it's amassed fatty tissue from the wasting of muscle). Regardless, I was convinced Alex would be a scrapping football player someday, or a wrestler, or even a soccer player. Heck, I didn’t care. I was just excited to fulfill a dream like my Dad did, and his Dad before him.

“Your son has Duchenne Muscular Dystrophy,” the neurologist bluntly told us after a heavy sigh. The conversation then fell silent, as we didn't know what to say. I oddly remember thinking. So! Everybody has SOMETHING. Duchenne Muscular Dystrophy? Pfft! No big deal, we can handle this. I had no clue of the seriousness of Duchenne. I had no clue of the devastating affect this disease would have on our son and our family. My mind was in full bring-it-on mentality. We would help him to get better, and then life would go on as planned, along the course we had charted. Kristy, always the more intuitive and pragmatic half, was direct and clear-cut with her response. “Are you saying that Alex will lose the ability to walk?” 

Oh, come on, dear. Walking. It’s no big deal. We can handle this. What’s for dinner?

“Are you saying that Alex will lose strength in every muscle of his body including his lungs and heart? Are you saying that Alex will…” While she fell silent, I grew impatient.

Kristy, why so many questions?

“That’s exactly what I am saying, Mrs. Click. Alex is lacking Exons 41-52, the absence of which is characteristic of a child with DMD. His body cannot produce the dystrophin gene, the genetic glue that repairs muscle fibers when they tear and necessary for muscle strength. His condition will continue to worsen… ”

DMD? Glue? Doesn’t that seem a little callous? I still processed the information with confidence that everything would be fine. I barely remember the neurologist’s description of the horrible disease that affects about 1 in 3500 boys, a disease brought to light by Jerry Lewis each Labor Day weekend. Although I remained stuck on an acronym and glue, my brain subconsciously processed the news was not good. Seriously, not good. I knew that I should say something. I was the man of the family for goodness sakes, the rock, so to speak.

“Mr. Click, do you have any questions?”

“Uhh, no. None that I can think of at the moment.”

“Mrs. Click?” Silence again filled the connection. Kristy was too distraught to respond.

Time for me to step in, to take charge. “Thank you, doctor.” I then remember thinking, Thank you? That seems like an odd response. What, thanks so much for giving us such terrible news on this fine day? “Thank you, I guess we’ll be in touch.”

The day was July 5th. The neurologist told us on the phone she knew the results a couple of days prior, but she did not want to ruin our Independence Day holiday. Ironically, independence would slowly and surely become a foreign word to Alex and our family. His needs, and our lives, were forever changed. We were in shock. How could this be? Why us? Were we prepared? Was it fair? None of it mattered at the moment. DMD had staked its claim.

Welcome to Duchenne.

Recalculating….


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YOU ARE YOU...

7/2/2015

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We have a bedtime routine, Alex and I, a bonding conversation that has happened every night, without fail, since he has been about three years old. It's a tender moment between father and son, one where Alex shares his hopes and fears, and I’m fortunate to see life from a unique perspective. He’ll tell me about a girl he likes or a disagreement with a friend. He’ll tell me about a new video game that’s coming out soon or a movie he’d like to see. He’ll even ask teenaged questions about girls, sex, drugs, or need me to explain something he saw or heard that doesn’t make sense. I so value that he feels comfortable to even ask about such things, and I do my best to answer him honestly. Sometimes, however, his questions are challenging and can break a Dad’s heart. Such as this one.

“Why me?”

It’s clear what Alex is asking. He wants to know why he has Duchenne Muscular Dystrophy. He wants to know why he is not healthy like his friends and cannot walk or use his arms like they can. He explains how he watches them run down the street, bound effortlessly over uneven ground, ready to play in the next pick-up game in the cul-du-sac or driveway, and he wonders why he can only sit and watch. You can practically feel his frustration. As a parent, you want to make it all better or at least go away temporarily. With Duchenne, you know you can’t. We hope, wish, and plead that Duchenne is a bad dream. But it’s more than that. It’s reality.

“Why do I have Duchenne, Dad? It’s not fair! It’s not fair! It’s not fair!”

What do you say?

I’m here to tell you, when you hear it from your kid, who knows what will come out of your mouth. I guarantee that your first reaction will be a deep sigh, and then you’ll begin with “Well…”  After that, all bets are off. You may stutter and stammer a response, hopefully one that makes some sense to a kid. You could respond with the tried and true, the traditional way our culture handles such mysteries. Plant a seed of hope and do so with a smile. Say anything but the grave truth. Tell him stay strong, that a cure is right around the corner, and that doctors are working night and day. Say it’s all meant, and that God has a plan and that someday your Duchenne will be gone! Hopefully in this world, but certainly the next. Keep the faith. Prayers are occurring daily. And when they do….

Reality is less radiant. No matter your passion or faith or excitement for eventual healing, the culturally accepted words are difficult to uphold when you see Duchenne’s current survival rate of zero.

Duchenne is a slow train wreck where the metal collides, scrapes, twists, buckles, bends, and breaks as it derails, lifts, falls, and wrecks throughout your son’s entire lifetime. It never takes a break. Just when you figure out how to handle the endless chain of adversities, another creeps up. Difficulty walking long distances? Get a stroller chair. Falling face first onto the ground? Get a power wheelchair. Difficulty coughing? Get a cough assist. No longer able to sit up on a toilet? Devise alternative means for bodily functions. Cannot sit up in bed? Become skillful with pillows or get an incline bed. Cannot turn or roll over during the night? Do it for him. Cannot lift a book? Help or read to him. Cannot lift food to his mouth? Again, do it for him. Cannot get out of bed? Use a hoist to lift him into his wheelchair. Cannot access the family car? Get an accessible vehicle. Cannot get his wheelchair into your house? Add a ramp and adapt your house. Cannot visit friends’ inaccessible houses? Bring along a portable ramp. Uneven sidewalk? Find another way. Storefront with a step? Find another store…. I could go on. It's practically endless.

The truth is that Duchenne is a tragedy with an unknown number of acts, where the curtain teases and threatens to fall at any moment. Alex doesn’t say it, but he knows something isn’t right. His body aches in ways we take for granted. His back cracks for the simplest of reasons. His muscles tighten and refuse to cooperate. Someday, he’ll know the statistic above. Someday, he’ll read about it or someone will unintentionally (or not) describe his grim future.

What then?

As I see it, we must be honest. He deserves as much, for what he must endure.

This is what we tell him.

“Alex, you have Duchenne. We know it sucks, and we hate it as much as you do. We know you want to stand and walk and run like your friends. We know you want to do many things that you cannot. But, you know what? It’s okay, because we love you just the same. It doesn’t matter if you walk or run, sit or stand. You are you….and we love you just the way you are!”

The smile Alex gives in return is priceless. It’s genuine and loving, and precedes hands held open waiting for you to bend down for a heartfelt hug. Although his arms cannot easily wrap around you, his emotion clearly shows his appreciation for loving, understanding, and accepting him. The feeling makes you both forget about the train wreck and appreciate the moment, which is the ONLY way to handle Duchenne, and sometimes the only way to handle life – one moment at a time.

Through it all, we try to help Alex to focus on the things he can control, like his ability to smile and help others smile, sleepovers and staying up all night with buddies, laughing hysterically, bonding over a shared video game success, enjoying anything dipped in barbeque sauce, strolling along the sidewalk and visiting neighbors, watching movies, talking with people and helping to brighten their day, petting every dog you see, or going to zoos, bookstores, malls, and baseball games, to name a few. But, most of all, we help Alex to laugh, love, and live the moment. The moment is the only place where life is guaranteed.

When we hear laughter coming from Alex’s room, it reinforces our belief that life is what we make of it. Alex thankfully chooses to laugh and live. He chooses happiness when sorrow is lurking ever-present and a heartbeat away. He chooses to laugh in the rain, despite gathering clouds on the horizon.

“Why me?”

“It doesn’t matter. You’re you, and we love you just the way you are!”

Alex reaches over to hold my hand as he settles in to fall asleep. “Thanks, Dad.”

“No, thank YOU, Alex.”


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