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HAPPY JUNE!

6/13/2019

June is a pretty cool month when you think about it. It’s Summerfair and the official start of summer! It’s everything outdoors. It’s not too hot and not too cold. It’s sunshine, suntans, and swimming pools. It’s beaches, breezes, and bathing suits. It’s baseball, soccer, and cornhole, as well as 5Ks, triathlons, and marathons. It’s kids playing all day and into the night. It’s adults on patios enjoying a cold one or three or pouring another margarita. It’s lawnmowers, yard work, and sweat. It’s lemonade stands, slushies, and slow-moving ice cream trucks. It’s the nighttime sounds of crickets and locusts mixing with the fleeting sight of fireflies and fireworks. With June comes concerts on the lawn, blockbuster movies, and outdoor dining. Fitbit steps seem to multiply as do the miles on your family car during vacation. Simply put, June is packed with fun as it brings timeless days, eventful nights, and all-around good times!

But, did you know…

June is also Duchenne Muscular Dystrophy Awareness Month.

Yep, it’s true. You may or may not have known this. You may have seen a Facebook post about awareness to this lethal disease, or simply may have scrolled onward searching for the next cat video to share. You may have attended a local fundraiser, run a 5K, or completed push-ups in support of finding a cure for Duchenne. You may know of someone with Duchenne, and the challenges they face every day. You may have lent a hand every now and then and made someone’s day. In any case, you are hopefully aware of Duchenne Muscular Dystrophy, its cruelty, heartbreak, and unforgiving progression. And, sadly, you may be aware the disease has no cure.

None.

Nada.

Zilch.

…sigh.

But, sometimes, awareness is not just knowing about the subject itself. It’s not just knowing that Duchenne steals your ability to walk. It’s not just knowing how Duchenne affects every muscle in the body, including the heart and lungs. It’s not just knowing of the slow, torturous progression on all life fronts from health to friendships to simple everyday tasks. No, sometimes, awareness is to understand the life you have without Duchenne. Sometimes, it takes an appreciation of what YOU have, to be fully aware of what those with Duchenne don’t.

Consider your ability to…

Run to the store / Pump gas / Wipe a tear / Scratch an itch / Shoe away a fly / Climb stairs / Use your arms for a hug / Turnover in bed / Stand in a shower / Stand at all / Write a check / Sit up straight / Push an elevator button / Step off a curb / Move in sand / Scoot upright / Wash your hair / Lather your body / Raise your hand for attention / Open an umbrella / Lift a drink / Lift a fork / Lift a spoon / Cut food with a knife / Wave to a friend / Play catch / Go anywhere without asking for help / Move freely in a crowd / Throw a ball / Eat unassisted / Get into the basement quickly during a tornado warning / Avoid a ball flying fast at you / Lean in for a kiss / Carry a tray / Load paper in a copier / Carry a book / Tip back a cold one / Race out the door / Throw a punch / Open your wallet / Bounce a ball / Get quickly out of bed / Open a dresser drawer / Ride a roller-coaster / Swipe a credit card / Hold a menu / Pull up socks / Load a DVD / Step into a car / Load the groceries / Drink without a straw / Pat someone on the back / Reach for something on a table / Use a can opener / Breathe unassisted / Tear open a bag of chips / Use an escalator / Cook dinner / Have blood drawn without an ultrasound / Sit up straight / Help someone off the ground / Put coins in a vending machine / Descend stairs / Clean the kitchen / Make a sandwich / Scream loud / Hike steep trails / Extend a hand / Shield your eyes from the sun / Push a shopping cart / See where you are going in a crowd / Step over a exposed root on a trail / Wash the dishes / Shoot a basketball / Sit in comfort / Heap helpings from a smorgasbord / Go on a date without your parents / Pass the gravy / Step through mud / Charge your phone / Pick up a phone / Cross anywhere on a street / Climb a mountain / Use a hammer / Plant a garden / Park wherever you want / Arm wrestle / Empty the dishwasher / Tend to a garden / Open a gate / Wash the car / Open a microwave / Enter someone’s home / Cut the grass / Open a bottle / Dress yourself / Tie your shoelaces / Use playground equipment / Put on shoes / Fix a tight waistband / Position your legs for comfort / Position your feet for comfort / Trim bushes / Pick your nose / Open a door / Tie a tie / Spray a bottle / Have friends visit / Hit a volleyball / Open a wrapper / Fasten a seatbelt / Pull up your pants / Dance more than a wiggle / Use a toilet / Hold open a book or magazine / Wipe yourself / Brush your teeth / Comb your hair / Rub a sore muscle / Open a soda can / Close a door / Pull a wedgie / Step into a bathtub / Open a laptop / Stop yourself from falling / Wash your hands / Vacuum the carpet / Rake leaves / Use a Q-Tip / Stretch in the morning / Hold a hair dryer / Put your feet on the floor / Hold a phone to your ear / Cut your toenails / Recover after you stumble / Go through a metal detector without a beep and a search / Crack your knuckles / Reach for anything on a store shelf / Carry in the groceries / Enter a home other than your own / Use an ATM / Pull the covers up / Swat a mosquito / Put out a fire / Throw off the covers / Apply deodorant / Hit a drive / Retrieve something fallen / Pick off dry skin / Move furniture / Change the sheets / Plug your ears / Put away the dishes / Visit a friend / Wash a window / Run / Start a fire in the fire pit / Dive in a pool / Put on underwear / Clean a countertop / Play tug of war / Put on a bathing suit / Park in a narrow parking space / Move without children staring / Move without some adults staring / Reach into your pocket / Call out for someone's attention far away / Push away a dog licking your face / Slide down a waterslide / Use nail clippers / Stand and pee / Write your name in the snow / Make snow angels / Jump into a pool / Scan an item at self-checkout / Reach into a washing machine / Turn a key / Wave to a neighbor / Pull weeds / Arm wrestle / Hand someone the correct change / Look behind yourself / Defend yourself / Sit anywhere in a stadium / Reach into a dryer / Throw a ball / Kick a ball / Flip a hamburger on the grill / Catch a ball / Fix a wrinkled bedsheet / Wade in a creek / Turn on a faucet / Sit anywhere at the movies / Reach into a cooler / Turn your head far / Open a present / Fold the laundry / Curl up in bed / Step over a log / Sweat from exertion / Fill the pet water dish / Lift anything over a few ounces / Apply sunscreen / Shovel the driveway / Clap your hands / Turn a doorknob / Feel ground beneath your feet / …

…to name a few

(note: these abilities are not all-inclusive. Much like life, Duchenne affects everyone differently. This is just our experience.)

Now, think about how you would react if you lost any one of the abilities listed above. Think how you would feel if you would lose two or three. Or four? Consider if you lost all of these abilities, with more certain to come. How would you react? How would you cope watching others do what you cannot? How would you go about your life…everyday? How would you feel knowing it will only get worse?

This isn’t to paint a dark or bleak picture of Duchenne. No, far from it. This blog is meant to bring you awareness for what YOU do every day that some cannot do at all. This is to remind YOU of abilities you may not even think twice about and to remind YOU of what those with Duchenne have lost.

Think about that.

What we generally take for granted, is an ability gone or soon-to-be-gone for those living with Duchenne. What we may consider second-nature, is a desperate and distant hope for others. For abilities we wouldn’t give a second thought about, those with Duchenne can only snort and shake their head…if they haven’t lost that ability already.

So, take pause this June and be aware. Not just of Duchenne, but of your life and what you CAN do. Be aware of the mood you carry, its source, and its effect on those around you. Be aware of how you would live if you didn’t have any of the abilities listed above. Be aware of abilities not listed above that should be. Be aware of what you consider your misfortune.

Then, be aware of someone living with Duchenne and consider how they live. Think of how they smile, laugh, and love…DESPITE their adversity, want, and knowing. Think about their growing isolation. Think about their increasing immobility. I challenge you to listen to them whine and complain about what they do not have. Listen hard, because you may not hear it. Better yet, spend time with them and see how they view this life we share. You may be surprised, because we can learn a lot from Duchenne, more than we may fully grasp otherwise.

This June, know that a person living with Duchenne…

…LIVES with a disease they did not ask for,
…LIVES with a disease through no fault of their own, and
…LIVES with a disease that steals a part of them every day.

Yet, they smile…

…because they can,
…because it feels good, and
…because they see life’s goodness as you should, too.

Yet, they laugh…

…because they can,
…because it spreads cheer and makes life better, and
…because it can be shared.

Yet, they love…

…because it’s beautiful, healthy, and positive,
…because it’s human, and
…because more than anything, it’s the one ability Duchenne can NEVER take from them!

HAPPY JUNE!

HAPPY DUCHENNE MUSCULAR DYSTROPHY AWARENESS MONTH!

Thank you for being aware.

Now, let’s make some Smore’s!

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BECAUSE OF KYLO

4/17/2019

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The rhythmic sound of Alex’s Bi-PAP filled our Chicago hotel room last week and my heart. The sound was not only peaceful and soothing, but life-sustaining as it pushed air deep into his lungs to help him rest peacefully and give him strength for another day. The sound was not only calming and reassuring, but grounding as it blended with the metallic clang of elevator doors outside our room, random honks of aggressive drivers beyond our window, and distant knocks in the hallway from busy housekeepers. The sound was not only real and vital in our battle against Duchenne Muscular Dystrophy, but also served as a steady reminder of our son’s dreams, our responsibility to help him live those dreams, and the awareness that we have today to make those dreams possible.

Still, something didn’t feel right about the sound last week. The Bi-PAP’s rhythm seemed unsettling and unnerving. It seemed foreboding, like an ominous warning from somewhere dark and sinister. For some reason, the equipment’s mechanical, pulsing sound made it seem like we had been transported to a galaxy far far away and that Darth Vader himself stood nearby, breathing hard and certain.

KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR

Or, more likely, Star Wars had taken over my conscience! It wouldn’t be surprising.

You see, Alex and I attended Star Wars Celebration 2019 in Chicago last week, and the five-day event was nothing short of mind-blowing! It was Star Wars, Star Wars, Star Wars…everywhere! Seriously EVERYWHERE! Signs, posters, and exhibits featuring anything Star Wars filled the cavernous McCormick Place Convention Center. Star Wars celebrities, personalities, and hosts occupied stages, signed autographs, and posed for pictures with enthusiastic fans. Unique galaxy props, toys, and clothing for sale tempted you at every turn. Superfans hosted panels of Star Wars trivia, Star Wars collectibles, and how to build droids, to name a few. Elaborately costumed fans roamed the convention space and willingly posed with anyone, like one big Star Wars family! Honestly, with the tens of thousands of fans in costume every day, many carrying lightsabers, and most wearing smiles, this event would leave you in awe of humanity!

We met people from all walks of life, all parts of the planet, and all parts of the galaxy. We met fans dressed as Obi-Wan Kenobi, Darth Vader, and Luke Skywalker. We saw fans dressed as Anakin Skywalker, Princess Leah, and even George Lucas! We met creatures from planets and galaxies too many to name. We spoke with celebrities and hosts, who made Alex feel a part of it all. And, as typical with Alex, we befriended parking attendants, janitors, ticket scanners, security personnel, and more. It wouldn’t surprise me if Alex was now pen-pals with the BBQ sandwich cart vendor, who we purchased lunch from every day.

“Hello again, Kylo! Want the usual pulled pork and a water?”

It’s human (and alien) connections like these that are most appreciated and fill the heart!

For example, following the opening panel featuring Star Wars - Episode IX – The Rise of Skywalker, a burly security guard noticed our struggle in crowd gridlock. He quickly came to our assistance, told us not to worry, and VOCALLY parted the crowd for Alex’s wheelchair to follow. After expertly parting the masses like Moses and the Red Sea, the kind and surprisingly gentle man bowed and offered a fist bump as if he had just helped the leader of the Resistance!

At another panel, a blind man sitting next to us overheard Alex saying the overhead lights caused him dizziness and we should leave. The man tapped me on my arm, removed his hat, and then kindly offered it to Alex so he could shield his eyes. Dizziness averted! Panel enjoyed! Friendship established! Afterward, we returned the hat and chatted with the friendly man from California who loves Star Wars as much as Alex. His young daughter dressed as Rey stood alongside and shared her excitement as well!

In the parking garage, a security guard on a smoke break saw our time-consuming efforts of releasing tie-downs, exiting our van, and then repeatedly lifting and repositioning Alex for comfort in his wheelchair. The grizzled security guard dropped his cigarette, swiveled his foot on it, and then nodded us over while cautiously looking around. The helpful man then ushered us through some doors, into a security warehouse, and then through a “secret” door that opened DIRECTLY onto the Celebration main floor! This awesome act of kindness allowed us to avoid thousands of fans at entry checkpoints and helped us enter the Celebration without delay.

“I figured you needed every advantage you can get,” the kind man said with a smile and a wink. “Come back here every day, and I’ll help you out!”

We thanked him profusely as he added, “Enjoy your day, Kylo!”

(Side note: it’s these random acts of kindness that make living with this hard disease so bearable. EVERY time, it puts a smile on your face and warmth in your heart that people care!)

Yet, despite these wonderful people, Star Wars Celebration 2019 also had a dark side through no fault of its own. Because of the sheer volume of fans, many overlooked Alex as if he was invisible. I realize this may be hard for some to understand because Alex is so social, but when you are sitting in a wheelchair you are generally below line-of-sight and often not seen. Most people looked forward and ahead to see where they are going in the mass of fans and seldom looked down to a kid so desperate to share his passion for Star Wars. On top of that, most people were focused on getting to the next panel, finding that unique collectible, or searching for autographs and photo-ops. Few took notice of a reclined Kylo Ren seeking human connection while trying to navigate his way.

“Hey, man! I like your costume!” Alex would say sideways from his reclined position. After no response, he would try again. “Do you like my costume?” He waited politely for a few seconds but watched as they walked away and engaged enthusiastically with someone else.

“Hey bro, did you see the Episode IX panel?” He prompted others without success. “It was awesome, don’t you think?” He continued in hopes they would hear him though didn’t. Silence usually followed his attempts, along with the sight of another costumed backside walking away.

“Do they not hear me, Dad?” He would ask. “Don’t they see me?” He would plead. “Don’t they know I’m a fan, too?” Despite his disappointment, he rolled onward towards another costumed fan, hopeful for connection.

This isn’t to say people were rude. No, far from it. Most were just oblivious to Alex’s desire to share his passion and to communicate with someone other than Dad. It’s a hard thing for others to realize when they don’t look down in a mass of people. It’s a harder thing to explain to a kid who craves human connection. Most times, people only noticed Alex when they nearly collided with his wheelchair, apologized, and then moved on. Other times, the noise of the Celebration was simply too loud for his soft voice to overcome from a reclined position. Some absently stared as they passed or didn’t know what to say to a young man leaning back and sipping portable ventilation. The downside of these missed human connections was that it unmasked and compounded Alex’s severe back pain.

“Dad, my back really hurts again! Can you lift me back?” He would say while we weaved aimlessly through the crowd. We saw an open spot along a wall and rolled towards it. We then performed our lift-back acrobatics (again), readjusted the layers of his costume fabric, and repositioned his red lightsaber across his chest. Before we moved on, we made sure his glove-covered hand had a solid grip on his lightsaber so it would not fall off his lap, though did often.

As much as the Celebration was fun, this trip was a taxing. The drive to and from Chicago was hard. The multiple tie-downs in our accessible van were hard. The transfers in and out of bed were hard. Moving through the parking garage, Celebration space, and masses of people was hard. Throw in rush-hour commuters, notorious and unavoidable Chicago potholes, and a blizzard with three inches of slushy wet snow, and the entire trip was downright exhausting for both of us, physically and mentally.

Through it all, Alex sat in a constant state of discomfort. He adjusted and reclined his wheelchair often and needed repositioned frequently. He took prescribed pain meds to help manage his pain and counted the hours until he could take some more. He slept long hours and skipped panels he had wanted to see so he could rest. He fell asleep during our daily commute and sometimes during panels where talk droned (ahem, Droid Builders). He asked to leave early each day so he could rest in the hotel bed. He ate dinner in bed most nights. He forced himself awake most mornings and pushed himself onward each day because he wanted to celebrate his passion – Star Wars – with hopes of sharing his passion with others.

Every day, Alex dressed as Kylo Ren. Every day, the young man wore a black long-sleeved pleated shirt, a long black flowing robe, a loose black full-bodied hood over his head, and a black leather glove on his left hand. He carried a cross-barred red lightsaber across his chest and rolled onward through the crowd despite his discomfort and pain. He offered a smile and a nod to every person who looked down and engaged in conversation with those few who took the time. Every day, he clenched his hand in hopes of a fist bump with whoever noticed.

He is the toughest, most determined, kid I know.

We left the five-day Celebration a day earlier than planned. We did because Alex’s body was simply spent and he wanted to conserve his energy for the long drive home. Despite his exhaustion, we had a great time! We lived everything Star Wars, enjoyed our time together as father and son, and filled our days with as much as Duchenne and his ailing back would allow.

Today, as I reflect on our third Star Wars Celebration, I cannot help but smile with the memory. I do not only for the fun we had or for the adventure we shared in a galaxy far far away. I do not only for the memories of standing against the wall enjoying delicious BBQ sandwiches, teasing him about his desire to take a picture with a scantily clad Princess Leah, or seeing his satisfaction one night with Chicago-style deep dish pizza. I do not only for meeting kind strangers who didn’t need to help us but did in the most memorable and simplest of ways. I do not only for those who took the time to chat with Kylo and help him forget about his back pain, if only for a short while. I do not only because of the push of air that will now forever sound like Vader.

No...I smile because of Kylo, and his determination to make the best of a tough situation, live life to the fullest, and fulfill a dream despite the constant headwinds of living with Duchenne.

KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR

Until next time, Chicago!

May the force be with you!

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THE SILENT BATTLE

3/8/2019

8 Comments

A silent battle accompanies life with Duchenne, one you seldom reveal. It does as you think of where you’ve been, where you are, and where you’re going with the monster. When you hear of the newly diagnosed, you cannot help but relive your nightmarish introduction to the beast, reluctantly nod with understanding, and then shake your head in familiar disbelief. When you reflect on the Duchenne journey you’ve since traveled, you snort with incredulity for what you’ve overcome…some challenges considered impossible, most dreamed improbable, all simply unbelievable.

You then contemplate the path yet ahead, if you’re so lucky, and imagine yourself doing what those currently before you do every day. You wonder if you’ll have what it takes, as they seemingly do…the patience, perseverance, and fortitude to push through the certain difficult days and nights. You wonder if you’ll have the strength for hand-to-hand combat when the going gets tough. With your son's mobility long since vanished, you read of ventilation, tracheotomies, and feeding tubes, to name a few. You learn the hazards of aspiration, pneumonia, and cardiomyopathy for starters. You sigh heavily and try to shake the worry and fear, though it lingers deep, patiently awaiting its turn on your front lines, if it isn’t there already.

I say this because everyone living with Duchenne (son, parent, grandparent, or sibling) endures this silent battle whether they show it or not. Too often it’s unspoken, though it occupies your every thought. Too frequently it’s dismissed, though you can never let it go. Too perilously, it swings between I got this to WTF, as you live the phrase you ain’t seen nothing yet. As the disease weaves its way into every aspect of your life, from health to relationships to employment to finances to education to transportation to friendships to…I could go on, you wonder…Can I stop the freight train? Can I make a difference? Can I mend the heartbreak? Am I able?

Yet, you push onward.

As you watch your son grow older, you share his hardship. You understand his struggle to keep up with others, maintain old friendships, or find new ones. You feel his frustration when he cannot do things he wants to do. You pick him up off the ground when he falls, carry him on our shoulders when he cannot walk, or guide him gently via a lift to his wheelchair so he can simply move. You feed him, groom him, and support him any way you can. You smooth back his hair and hug him tight as he seeks connection while his immobility advances. You comfort his fears and mounting disappointments as his isolation grows. You listen and acknowledge how it’s unfair and how you know it hurts as his world shrinks. You encourage him to live, laugh, and love each day because it’s the only way. On tough days, you tell him it’s okay, we can overcome this, you can always count on us, or any other expression of strength, perseverance, and support. As often as possible, you tell him you are loved. Because he is and needs to know it.

But, as you wash your son’s hair, clean his body, and groom him in ways he cannot, you sense it. When you stretch his muscles in determined hope to slow inevitable tightening, prolong use, and simply buy time, you feel it. When you pick him up after falling down or lift his hand to his mouth because he cannot, you live it. Pain. Frustration. Anger. Sometimes, despair.

Oftentimes, the beast dangles hope before you and then snatches it away if you dare reach out. Despite your strength, it steals your sleep and tires you endlessly. Despite your patience, it tests your limits and escalates your frustration. And, when you enjoy that rare moment of normality, you learn not to get too comfortable because Duchenne often gets the last laugh, sometimes mocking you the fool to think otherwise.

This isn’t to say all is lost with Duchenne, it isn't, nor that hope does not exist, it does. Today, Duchenne research advances faster than ever before, encouraging hope for a cure. Drug trials targeting the heart, lungs, and other muscles, seek participants every day in hopes of slowing Duchenne’s progression and lighting the way. Advocates raise our community’s voice and lobby legislators to support funding towards it all. For those young enough to benefit, hope is very real and encouraging. For others…

Yet, you push onward.

That’s where my silent battle currently resides. As much as I fight against the beast, it grows. As much as I push it away, it returns. As much as I want to scream, it smirks. The battle is frustrating, infuriating, and enough to fill this normally peaceful man with emotions I dare not admit. Duchenne maintains a pressure on your throat, your heart and your soul that is constant, progressive, and downright evil. Do you think you can escape me? It challenges. Do you think you can ignore me? It dares. Do you think I care? It mocks. You beg and pray for the monster to leave your son and family alone. But, it doesn’t.

While you fight, you see other families living with Duchenne, some seemingly quite well. You see videos of boys walking longer than expected or standing strong and able, and smile for them. You read of young men attending college, working jobs, or getting married, and you’re happy for them. You read of Duchenne families traveling the world, getting out and about, or simply moving without pain, and you cheer them. You see parents, families, and friends running 5Ks, marathons, and even doing push-ups to raise money for a cure, and you give kudos to them. All fantastic and wonderful in their own right. All deserving of our support. Yet, all leaving you to wonder Am I doing enough? Should I be doing more? Am I losing the battle?

Yet, you push onward.

Through it all, you carry a smile and project strength, or at least try, because of those counting on you. Friends scurry about their lives, so you keep your silent battle from distracting them. Family knows too well the burden and what is required, so you share and keep it together. Your son looks to you for strength, so you give it and keep it positive as best you can. All the while, you push back against the rising tide while battling the persistent beast.

And yet, sometimes all it takes to keep fighting, to keep pushing, is an ear to hear the frustration, nip the anger, or cleanse the soul. Sometimes all it takes to keep fighting is a long hike in the woods, where your thoughts can wander, your breaths can deepen, and your priorities can straighten. Sometimes all it takes to keep fighting is a visit with family and friends to reconnect and restore life’s normality. Sometimes all it takes to keep fighting is pizza and beer on a Friday night or time spent on a summer patio to keep alive your hopes and dreams. And, more than anything, sometimes all it takes to keep fighting is to hear your son’s beautiful burst of laughter, fulfill his simple request for a hug, or hold his loving hand in yours to remind you of where you’ve been, where you are, and where you are going.

Onward…always onward.

Together

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SITTING WITH GEORGE

1/10/2019

2 Comments

With life comes perspective. You’ve heard this from me before, but it’s an absolute guarantee. Sometimes it arrives disguised and slow. Sometimes it smacks you hard and fast. Oftentimes when it knocks, you open the door wide and welcoming, inviting it inside like an old friend. Other times, you may curse and push back against its bully behavior. Either way, perspective shapes you and guides you into the unique person you are today. It molds your heart and defines your soul. It speaks for you with and without words and projects your character unto the world. The challenge we face, though, is to recognize when we have it, and use wisely for the benefit of everyone.

At least, that’s how I see it.

I say this because I grow so tired of reading, hearing, and seeing people berate, degrade, and downright stomp on others solely because of differing perspectives, solely because of differing politics, race, religion, or supposed privilege or lack thereof. Republican or Democrat, black or white, Christian or Muslim (or any combination of the world’s vast beliefs), legal or illegal, rich or poor, Buckeye or Wolverine…I’m sick of it. If I read another all-knowing Facebook or Twitter post that includes unnecessary words such as deranged or lunatic, I’ll puke. If I hear generalizations such as elitists, whiners, or extremists, I’ll scream. Add in such fine and thoughtul flattery like nutjobs or libtards and I’ll swear off social media for the rest of eternity. No joke. It’s tiring, juvenile, and ultimately sad for everyone.

But, strangely, these observations are why I LOVE Duchenne!

Seriously.

Believe me, never in my wildest dreams as a Duchenne parent would I think to ever say that I LOVE Duchenne but, in this case, I do. Duchenne is grounding. It’s raw. It strips life bare of most absurdity. It cuts through the crap we put upon ourselves because Duchenne is human reality. A cold, hard, and unforgiving reality. And with it, Duchenne brings a perspective of life on how to live…in real time and space. Not tomorrow or yesterday, but today. Right now!

Mark my word, there is no fake news about Duchenne. It sucks. It’s isolating. It’s exhausting. It’s brutal and relentless. Yet, it’s life. Hopefully, there will be a cure someday so that no young man or woman (and family) has to live with this monster ever again. Hopefully, Duchenne will be a distant memory for all who live with it today and a foreign concept to future generations yet born. Hopefully, Duchenne will never see the light of day again.

Hopefully…

Sigh.

But, for now, Duchenne is here to stay and it’s universal. The beast exists across ALL borders, races, and socio-economic standings. It holds no regard for cultures, beliefs, or political ideals. It could care less about any fabricated crisis that humans place upon another merely for the benefit of an agenda. Silently destructing at the genetic scale worldwide, Duchenne simply claims its next victim and goes to work destroying human life one muscle fiber at a time, sadly stealing young lives every day before their prime.

So, I ask you, why waste time putting down another so we may stand taller? Why silence an opposing view without listening to what it may have to offer and considering its benefit even if it doesn’t involve us directly? Why shout your thoughts and beliefs hoping the increased volume will drown any opposition and pave an easier path? Instead, why not take time to listen, cooperate, and encourage one another? Why not take time to live, laugh, and perhaps love despite our differences? It’s not that hard.

From my perspective, we may learn something about ourselves, if we did.

I say this because of what I am fortunate to experience every day as Alex’s primary caregiver. I say this after wiping his mouth, nose, and butt every day. I say this after applying lotion to his skin, brushing his teeth, and washing his hair, to name a few. I say this after experiencing HIS joyful approach to each day and the love he exudes for everyone he meets. Seriously…everyone (if you doubt me, you need to meet him).

Think about his approach to life.

When you cannot…

…stand, walk, or run,
…sit up, shift your body, or lift your arms,
…eat or drink without assistance,
…clean or groom yourself without help,
…scratch an itch or swat away a mosquito or bee or spider crawling up your leg,
…breathe without support, or
…simply move your body the way you so desperately crave,

…yet you STILL smile, laugh, and love…You know how to live!

When you are alone and wait, sometimes days without end, for others to simply…

…include you,
…invite you,
…call you,
…visit you, or
…remember you,

…yet, you STILL smile, laugh, and love…You know how to live!

When you can swallow the pain of…

…loneliness,
…heartache,
…fear, and
…the unknown,

…yet, you STILL smile, laugh, and love…You know how to live!

When you help others to feel better about themselves despite your adversity…You know how to live!

How I wish you could hear the frequent bursts of laughter coming from Alex’s room…when he has only his thoughts, video games, or movies to entertain himself. If you did, you would hear a content and happy heart and a free and joyful soul…despite Duchenne. How I wish people of the world could adopt his smile when relating with others and extend a fist to bump instead of a fist fight. If they did, they would see humanity’s goodness as Alex does…despite Duchenne. How I wish to always remind myself to let go of frustrations that admittedly overwhelm me sometimes and see life as Alex lives it. When I do, I experience the beauty life has to offer…despite Duchenne.

For me, THIS is how to live. THIS is what brings joy to my heart and compassion for others less fortunate. THIS is what makes life’s pettiness disappear. Not stubbornness to prove one’s self worth. Not righteousness or supremacy or belief or entitlement above another. Not as we are seeing the world behaving today, seemingly everywhere, top to bottom.

Duchenne is life exposed. It’s raw. It’s rare. It’s priceless. And, at no time is this more apparent in our household then during our days and nights sitting together…with George.

I’m not sure when Alex came to be known as George. It just kinda started one day long ago when Kristy referred to Alex’s curiosity in similar vein as the children’s literary character, Curious George. You see, Alex asks questions. LOTS of questions! So many that we nearly costumed him one year as Question Boy for Halloween (though he paraded the night as Captain Jack Sparrow, if I recall). Nonetheless, the name George stuck. And to this day, we refer to our time with Alex as Sitting with George.

It’s a peaceful time for our little family. Alex typically rests in his incline bed watching whatever he likes on television (because of his chronic back pain, Alex is most comfortable in bed instead of his wheelchair). Usually, he’ll watch a YouTube channel of someone playing a video game and narrating the experience (yes, this IS a popular thing these days) while Kristy and I and/or others sit on an adjacent couch and do our thing while spending time with him. On weekends, we are often joined by Kaitlyn and John who play video games with Alex or watch a movie or try a hot sauce challenge including fun and interesting questions. Alex’s good friend Zach will often bring another PlayStation console to play video games alongside Alex and silently bond through mutual gaming experience. We’ll host extended family gatherings, New Year’s Eve celebrations, and even a HS graduation ceremony equipped with a marching band…Sitting with George.

Every night, we’ll share family meals in Alex’s room as well as routines of Bachelor or Bachelorette on Mondays, America’s Got Talent on Tuesdays, Ellen, Jimmy Kimmel, Jimmy Fallon, The Voice, The Four, The Golden Globes, The Oscar’s, The Emmy’s, The Grammy’s, etc…you get the picture. We laugh (sometimes hysterically), cry, and scream at the antics only mass media and too much time spent together can provide. You name it, we watch it (or fall asleep to it)…together, as a family, while…Sitting with George.

Call us boring or whatever, I don’t care. But, I’ll take this lifestyle with Duchenne any day. It’s simple. It’s fun. It’s loving. It’s bonding. Sure, we’d love to hop in the van and cart our family to a school sporting event or concert. Sure, we’d love to jump up and run outside and toss a football, baseball, or shoot hoops in the driveway. Sure, we’d love to take family vacations somewhere exotic and warm, or climb mountains or water ski or travel the world.

But, we can’t. So, we don’t. Because sometimes life doesn’t work out as planned.

And, that’s okay.

Instead, and as Duchenne advances, we make the most of living with the unwelcome monster. More importantly, we lean on each other and do so together…as a family. I’m not sure how we’d be able to cope with Duchenne otherwise. The cool thing is that as Duchenne accelerates, we’ve learned that life slows down while Sitting with George, allowing us to enjoy every moment while we have it. Together. Be it helping Alex eat or drink, listening to him explain a movie fact or test our knowledge, or watching him navigate a video game with the utmost concentration while he simultaneously talks about anything and everything, it’s a life simplicity unlike few other. We’ll take it!

And, from my perspective…I wouldn’t trade it for the world.

“Okay, George! What’s on tonight?”

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THAT SPARKLE

12/6/2018

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It’s been said the eyes are the window to our soul. This holds truth as they often express our state of mind, our level of happiness, and the love we feel. They convey our joy of life and allow us to spread that joy to others, should we choose, sometimes with just a glance. When accompanied with a smile, our eyes shine light upon the world and open gates to understanding, caring, and compassion when we need it most. And, when we look deep into another’s eyes, the shared connection tells a story, a personal story, with unspoken words of truth and sincerity, no matter how terrifying the moment may seem.

This is one of the reasons I feel fortunate to experience life alongside our son, Alex. He gets it and works to spread his understanding as much as he can, despite his limitations. Like many young men living with Duchenne Muscular Dystrophy, he travels through life with a unique combination of adversity and joy. He cherishes human connection more than anyone I know. He looks beyond disappointment or worry or fear to live the moment with hope, happiness, and love. While he sees others run strong and free, he smiles in the face of immobility and constant pain. While he relies on others for nearly everything, he finds the joy in every day. While he lays in bed more often than not, he laughs for any occasion because he can. And, the beauty of it all is that given time, Alex will have anyone smiling and laughing along with him because…well, simply, why not?

I share these observations after attending the Louisville Supercon with Alex last weekend. Not counting two overnight visits to Cincinnati Children’s Hospital during the past month, this was Alex’s first overnight trip away from home in nearly two years. As you can imagine, he was ecstatic to get out of the house for a change of scenery. He looked forward to a mini-Dudes Trip filled with adventure, jokes, and late-night chats. He looked forward to meeting people from all walks of life, but especially celebrities he follows closely in movies and television. Although he worried mightily about his stubborn and aggravating back, he was determined…determined to make the trip despite his pain.

We stayed in a hotel a few blocks from the convention hall in downtown Louisville. Within moments of our arrival, not surprisingly, Alex befriended reservation desk clerks, hotel staff, and hotel guests while I unloaded the minivan. Every time I passed him, he was complimenting strangers and working his magic to get them to smile.

When we were ready to roll, I pulled Alex away from his new best friends and loaded him back into the minivan because it was pouring rain outside. Although we had planned to walk the short distance from our hotel, it is a well-known fact that a wet power wheelchair is no fun (nor are wet feet dangling beyond the umbrella’s protection). Somehow, we had to get closer to the convention hall and fast. The day was a-wasting!

While searching for parking, we stopped at a red light alongside an underprivileged man sitting in a wheelchair on a street corner. He had no legs and clutched an umbrella tightly to his chest while balancing a handwritten, cardboard sign. Despite the downpour, we could hear him singing.

“I’m siiiiiiinging in the rain. Just…siiiiinging in the rain.”

While Alex and I waited for the light to change, we made eye contact with the man.

He smiled and waved.

We politely smiled and waved in return.

“How’re we doing today, my friends?” he shouted loud enough for us to hear through our closed windows.

The man was a panhandler, no doubt. Homeless, possibly, as his wet sign declared. Yet, here he was on the corner, alone…and singing…in the rain. Say what you will about panhandling, but the scene hit a soft spot in our hearts. Perhaps it was the wheelchair connection. Perhaps it was our understanding of the mobility challenges the man likely faced every day. Perhaps it was the rain soaking him while we sat dry and protected. It could have been any number of reasons. But, for me, the look in his eyes said it all. They were friendly, happy, and singing…despite the rain.

I pushed a button to lower our minivan window. Before I could speak, he shouted again.

“A beautiful day to be outside, don’t you think!”

I chuckled along with him and replied. “Absolutely!”

We then handed the man some cash because anyone that happy and helping others to be happy deserves as much. As we then proceeded through the intersection, I glanced in the rear-view mirror to see him continuing his song. His enthusiasm to make the best of his difficult situation rang a familiar tune. I glanced to Alex in the rear-view mirror.

“What?” Alex countered.

I smiled and shook my head. “Oh, nothing…”

The parking garages around the convention were full, so we parked curbside to the event and I dropped off Alex about a block from the entrance. This meant leaving a young man alone on the sidewalk (under a building overhang) until I could return to escort him to the entrance and inside. The thought of bad parenting crossed my mind. The thought of milk cartons entered my thinking, too! But, hey, Alex was 19, I rationalized. Good to give him some personal space like all fine young men his age, I justified. I nervously watched him roll down the sidewalk with a young couple as I drove to find parking. What did I just do?

When I returned to the convention hall, a little damp and winded, Alex was nowhere in sight. A slight panic swept through me as I scanned the sidewalks and large atrium inside. The feeling soon disappeared when I found him inside and talking with a cosplay character dressed as Flash. I approached to smiles and laughter as if they had been long lost friends. They barely recognized my presence.

"Oh! Hi, Dad. This is Steve," Alex introduced.

So began our day inside the Louisville Supercon.

We picked up our passes and headed towards the main convention floor. We fought through the crowds and vast number of comic vendors. We contemplated t-shirts, posters, and pins. Before long, we found the celebrity section near a far wall and stood in disbelief at the number of celebrities sitting or standing by their tables, including…

Henry Winkler (Happy Days)
Alice Cooper (Hall of Fame Rocker)
Sam Jones (Flash Gordon)
John Wesley Shipp (The Flash)
Butch Patrick (The Munsters)
Brett Iwan (the voice of Mickey Mouse)
Steve Whitmire (voice of Kermit the Frog)
Charles Martinet (voice of Mario and Luigi)
Kevin Conroy (voice of Batman in animated series and PS4 games – Alex’s favorite)
James Mathis III (the voice of animated Black Panther series)
Ricou Browning (Creature from the Black Lagoon)
Ralph Macchio, William Zabka, and Martin Kove (The Karate Kid Movie)
Mark Henry, Sergeant Slaughter, Booker T, and Kane (WWE Stars)
Michael Rooker (Yondu in Guardians of the Galaxy)
Sean Gunn (Kraglin in Guardians of the Galaxy)
Walter Koenig (Star Trek)
Characters from Star Wars, Walking Dead, and the original Power Rangers
…and many others. Including actors Alex elected to bypass because he didn’t know who they were (William Shattner, Richard Dreyfuss, and Linda Blair)??

We had a great time, and throughout the weekend a few celebrities rose above the rest. One such memory was meeting Ralph Macchio…again, as we had met him before at the Cincinnati Comic Expo over a year ago. The charismatic Karate Kid connected a fist-bump greeting and then listened as Alex mentioned they had met before.

Ralph rubbed his chin in thought and then enthusiastically snapped his fingers with a genuine smile and rich New York accent. “You know what? I DO remember you! No, I’m serious. How could I forget you? How could anyone forget you? How have you been, my man?” Ralph then squatted to Alex’s level and off they went into long-lost friendship chat while I stood idly by as the forgotten third party. As the two traded memories, movie scenes, and more fist bumps, their smiling eyes filled their faces and mine! Their “re”-connection made the trip worthwhile, and certainly allowed Alex a reprieve from his discomfort for a while.

The good feelings weren’t just shared with celebrities! We also ran into a challenged young man sitting in a wheelchair who couldn’t stop talking about how he met his favorite actor. While the young man held a signed DVD to his chest, his mother explained how her son watches Happy Days every day and couldn’t wait for this day to come to meet Henry Winkler. I distinctly remember the chill I felt when the young man shared…“I met The Fonz! I met The Fonz!” and waved his signed DVD case for us to see. His smile stretched wide across his face and his eyes gleamed with happiness for meeting his idol. You couldn’t help but feel good for the young man and his family, thanks to the kindness of others like The Fonz.

It’s scenes like these that make you appreciate humanity. The connections go beyond an autograph, a handshake, or a conversation. They persist despite the stormy weather and an inconvenient red light. It’s taking the time to recognize each other as fellow humans, no matter how famous or well-known, no matter how able or not, and no matter how wet or dry. Personal connections validate our humanity, goodness, and hope for our future. They strengthen and sustain us for the days we need them most, which can be often and trying. And the beautiful thing is, they can be initiated and shared with the simplest of actions.

I say this because one of the most memorable celebrity meetings at the Louisville Supercon was also the most unexpected. Late in our first day at the convention, a large, muscular, man stepped forward from behind a celebrity table as we approached. He came forward to greet Alex, but his face held expressionless as he walked slowly, steadily, and methodically towards us. Deep down, I wanted to run, but the man’s unnerving, piercing stare held me fixed in place as if my feet were set in concrete. I glanced to Alex to gauge his reaction, but his smile told me the feeling was all mine. I drew a sharp breath and stood firm.

Soon, my fears evaporated the more we talked with the man. Within minutes of chatting with Alex, this menacing monster of a man melted into a new friend. His apparent thirst to inflict harm had turned to smiles. His terrifying exterior had softened and turned to laughter. Before long, the man paused and then shook his head in awe. A smile spread wide across his face as he stared at Alex.

“Man, there’s just something about you,” he said sincerely. “You’ve got that sparkle!”

Yes! He sees it! I sighed in silent relief. From the joy in his eyes, I could see we had nothing to fear.

It warmed my heart this monster of a man recognized the joy Alex brings to the world. It’s a gift many young men with Duchenne possess and share. Perhaps it's their ability to see the world through an unfiltered lens. Perhaps it's their ability to cut through the world’s noise and see humanity the way it should be seen…caring, compassionate, and supportive. Real.

I say this because we are ALL human…in this life…in this time. It doesn’t matter what possessions we own or job we have or office we hold. It doesn’t matter where we come from, the color of our skin, or what language we speak. We are ALL human and our lives affect one another more than we’ll ever know. And, sometimes, all that is needed to make the world a better place is the shared sparkle in our eyes.

Try it.

We thanked the large man standing tall and still, and then turned to roll away towards another celebrity. Despite the man’s kind words and the time he took speaking with us, there was just something about HIM that I couldn’t shake. I nervously looked back over my shoulder to make sure he wasn’t following…slowly, steadily, and methodically.

You see, it’s not often one receives such kindness from the actor better known as
Jason Voorhees….from Friday the 13th.

Thank you, Louisville! These dudes had a fun time!

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THE INFUSION

11/9/2018

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Duchenne Muscular Dystrophy is a hard disease on so many levels. It restricts, steals, and threatens. It demands attention at every turn and bullies at every opportunity. It never sleeps. It spreads, camps, and seeks no forgiveness for the wake it creates or the destruction it leaves behind. It constricts everyday movement, comfort, and convenience. It impacts friendships, travels, and careers. It arrogantly isolates, suffocates, and disregards. It demands attention every day. It could care less about you or the life you thought you would lead. In short, Duchenne is enough to make you scream, cry, and question, which I do quite often, admittedly.

On the other hand, Duchenne brings with it an incredible perspective unlike many other. It brightens as it darkens, amazes as it frustrates, and loves as it shreds. Simply said, Duchenne strips life bare and focuses our responsibilities to one another. I say this because when you see your son lying motionless in bed, unable to do practically anything on his own, other than speak, its real. When you watch him with others more able and see him smile and laugh, listen and support, and brighten and encourage, it’s incredible. When you hold his hand as he falls asleep or wipe his tears when he’s scared, its human.

It’s why I share our Duchenne journey. It’s why I share Alex’s story. I do for the life lessons it provides.

Alex lives with the monster Duchenne, through no fault of his own. The disease robs him of a life most of us enjoy and sometimes take for granted. He cannot walk. He cannot run. He cannot stand. He either lays in bed or sits in a wheelchair. Sadly, he has forgotten the feel of ground beneath his feet. His legs beg to move, but can’t. His arms strain to lift, but don’t. Some days, his lungs scream to breathe freely, but cannot. He requires assistance to eat, drink, breathe, dress, groom, toilet, blanket, blow, scratch, stretch, retrieve, transport, write, type, and vote, to name a few. His wave is nearly imperceptible and often overlooked though he desperately wants your attention. His voice is often unheard though he desperately wants to share his thoughts. With Duchenne, Alex’s restrictions will only increase with time.

It’s rather incomprehensible, frankly.

So, how does he do it? How does a young man living with Duchenne, on the cusp of adulthood, approach each day without fear? Without anger? Without resentment of others more fortunate? How does he handle watching his friends continue on their life paths that diverge farther from his every day?

The answer is surprisingly simple. We should all take note.

Alex lives as best he can.

He smiles as often as he can.

He laughs as much as he can.

He loves as strong as he can.

He helps others to do the same.

I cannot emphasize this enough, especially the last one. The kid is wise beyond his years.

Alex’s life perspective was on full display this past week when he received a bisphosphonate infusion to strengthen his bones at Cincinnati Children’s Hospital. The infusion pulls calcium from his blood and transfers it to his bones, which have become ravaged with osteoporosis from nearly 15 years of steroid use. Over time, Alex’s osteoporosis has led to spinal compression fractures in all but three of his vertebrae. It has lessened his bone density body wide to a point where a fracture is but a awkward twist or unfortunate snap away. It has rendered him unable to sit up straight because of severe pain. It resigns him to a prone life more than desired. Hopefully, the infusion will help reverse this current trend. Hopefully, the infusion will return strength to his body. He will continue this treatment every six months.

The first infusion began early Monday morning this past week.

Immediately upon arrival to the hospital, a slightly nervous Alex sought his friend Herb in lab testing registration, even though our destination was still seven floors above. You see, Herb is a familiar face for Alex and a calming presence. The two have been friends for many years now, dating back to our early Duchenne years beginning at age three. Through the years, they have shared smiles and stories while I fill out administrative paperwork. They never fail to make one another smile and Alex often seeks him out whether or not our visit involves lab testing. Herb is a solid, strong, middle-aged African-American man with a kind heart and a beaming genuine smile. He takes keen interest in Alex’s life and likewise Alex does his. Their relationship is beautiful to witness as they laugh, joke, and catch up. They ALWAYS end each visit with a fist bump.

Guaranteed.

After visiting with Herb, we proceeded to the Building A elevators. Alex led the way and rolled slower than usual from his nerves. I trailed with an overnight bag in one hand and his hoist pulled awkwardly in tow from the other. We passed several security guards who visually scanned us as Alex nodded his standard “Sup, man?” to each one until they acknowledged his presence. He then added multiple “Have a nice day’s!” until they smiled in return and wished him the same. He clenched his hand for hopeful fist bumps, but they unfortunately went unnoticed.

On the elevator, Alex made room for a young man about the same age as Alex and then asked if he was a doctor. The young man smiled sheepishly and replied he was only a hospital volunteer in cardiology, but hoped to be a doctor someday. Alex encouraged him and wished him well as the young man engaged Alex’s fist bump before departing a floor below our destination. You could see the hopeful volunteer smiling with pride as he walked away and then turned to wave as he continued his day with a bounce in his step. I couldn’t help but notice the irony of the brief exchange between the young men.

We arrived to the 7th floor and made our way to our home-away-from-home for the next thirty or so hours. We laughed as we checked out the room’s vast amenities, including a brick wall for an exterior window view, sterile smells of cotton and sanitizer, and a TV preset to hospital safety videos! I cranked and hoisted Alex out of his wheelchair and into his bed, set up his ventilator, and then unpacked our belongings before we welcomed the steady stream of administrators, nurses, phlebotomists, technicians, residents, and doctors that filled our day and Alex’s bedside. Many times, they would linger and share a laugh with Alex before moving onto the next patient. Throughout it all, Alex chatted with each person as if they were old friends.

The infusion itself was simple, once they found a good vein. The procedure took approximately an hour and a half, but then required an overnight stay to check for potential side effects such as nausea, headaches, hives, painful joints, swelling, etc. Alex and I were not thrilled, but made the most of it. They told us to consider it like a vacation. They enthusiastically promoted the comfortable incline bed, told us to order from the healthy room-service menu, and then pointed to the wall-mounted TV. Seeing all this, who wouldn’t feel like they were on vacation? We politely nodded until they left and then joked about our good fortune at such a resort facility. To pass the time, we talked about anything and everything and then watched a couple of movies and a lifetime’s worth of Cartoon Network! Our night was capped by a welcome and recharging phone call from home.

Throughout the day and night, Alex seized every opportunity to chat with hospital staff. He encouraged one shy nurse to talk about her newborn who she missed dearly. He complimented every hairstyle and beard or mustache that entered our room from doctor to room service attendant. He wanted the window blinds left open so he could catch the eye of anyone who would walk by and peer in our room. We eventually agreed that sleep would make our departure come quickly, so we called it a night. We both fell fast asleep as the day had been surprisingly exhausting. Throughout the night, I awoke often and then smiled in amazement (as I lay on the oh-so-comfortable fold-out vinyl chair-bed with a bar that undercut the middle of my back) while listening to friendly conversations between Alex and nurses who checked on him every half an hour.

Late the next morning, after breakfast and after a doctor looked at Alex’s bloodwork results, Alex was officially discharged. Not unexpectedly, Alex thanked the doctor and told him he liked his beard and mustache. The doctor blushed slightly, stroked his chin, and smiled with pride.

“Why, thank you, young man! That’s very kind of you to say.”

“Someday, I hope to have a mustache!” Alex added truthfully.

“Keep at it,” the doctor encouraged Alex's minimal growth and then continued proudly. “I’ve been working on this one for about a month now!”

The two talked facial hair growth for a little while before Alex then clenched a fist and nodded towards it. The doctor recognized the request and stepped forward to lightly connect the bump before departing.

Then, as I packed our bag to leave, Alex’s morning nurse came in and removed Alex’s IV from his arm. Naturally, Alex told her she looked pretty. A nice compliment from a kind young man, I’m sure she thought as she held a gauze pad to the wound and stretched a colorful Band-Aid across his arm. Perhaps she was flattered. Perhaps she had heard it before. Nonetheless, she seemed happy for the compliment and smiled. Again, I admired Alex ability to make anyone’s day.

But then…Alex revealed he still had much to learn when he added (innocently)…

”You probably don’t hear that too much, do you?”

An awkward silence filled the room. I knew he was trying to score points for his chivalry, but I froze nonetheless and hovered over our bag. I glanced sideways to the young woman.

She hesitated, surely contemplating her reply, and then acknowledged the compliment as she replied professionally.

“Well, no…not that much. But, thank you.” She then exited the room with a bit of a chuckle, a kind wave, and well-wishes for a good week.

With my tongue set firmly in my cheek, I continued packing our bag. I nodded recognition that life and how to live is a constant learning process…for everyone. No exceptions. Although Alex has taught ME a lot about how to live fully, smile in the face challenges, and laugh as often as possible, this was his time to learn. Because everyone needs guidance now and then. We all do, and we’re here for one another.

I took a deep breath, understanding my responsibility to help him.

I began.

“Dude….”

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THE HONGI

9/19/2018

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Our family has a new favorite actor. His name is Manu Bennett, more popularly known as Deathstroke in the TV series Arrow, Azog in the movie The Hobbit, or Crixus in the TV series Spartacus. Still don’t know him? No worries. I didn’t either until last weekend at the Cincinnati Comic Expo. But from this day forward, I’ll never forget him.

For those unaware, Manu is a strong, chiseled, and deep-voiced actor typically cast as a tough guy - villain or hero. On film, he fights hard and usually wins. In press, he’s often found gracing covers of fitness and health magazines. In person, he is a tan-skinned New Zealander with dark flowing locks, a warm, beaming smile, and an incredibly caring heart.

The world needs more Manu’s. Let me explain.

The Cincinnati Comic Expo is one of Alex’s favorite days of the year. Each year, he circles the date on his calendar months in advance and counts the days until its arrival. He does not for the comic books, the graphic artwork, or the elaborate costumes, but for the plethora of actors willing to exchange an autograph, selfie, or both for cash. It’s a racket, if you ask me, with starstruck fans shelling out hundreds of dollars for the chance to meet celebrity. Not my usual cup of tea, but Alex LOVES this event, and we attend every year.

Our day started this year upon Alex’s waking and his excitement for the day. He couldn’t stop talking about the Comic Expo, and hurried me along to get him ready. He patiently waited in bed while I fed and then dressed him for the big day. Although he genuinely worried whether his deteriorating back would last, he eagerly brainstormed which movies to bring for the various actors to sign. Wait a minute, I thought! Who said anything about autographs? Ignoring my non-verbal warnings, Alex pressed.

“Yeah, Dad. Autographs!”

For whatever reason - perhaps his level of excitement or his challenging year of back pain - I relented. It had been a tough summer for Alex. I reconsidered and thought what the heck.

“Okay, but only one,” I surprisingly succumbed to his excitement.

“Yes!” he immediately replied with achievement, then pushed his luck. “Can I get two?”

I shook my head with resolve. “No. One.”

Alex frowned disappointment and pressed further. “Awwww, come on, Dad! You KNOW I love to meet people!”

I smiled and nodded agreement. “I know you do. We think that’s awesome. You can meet all the people you want! But…only ONE autograph, okay?”

Alex looked away to the window trying to think of another route of persuasion.

“ONE!” I preempted when he opened his mouth. I then revealed how I really felt. “Besides, they’re just scribbles on paper anyway.”

Alex grumbled his shock and disagreement. I silently worried if I had squelched his enthusiasm. I guess I was already in a sour mood. You see, he and I have different perspectives of the Cincinnati Comic Expo.

To Alex, the Cincinnati Comic Expo is a superhero-packed, fan-filled event that is alive and awesome! It gets him out of bed and out of the house. It allows him to spend time with people other than Mom or Dad. It connects him with the world and especially his heroes, favorite celebrities, and complete-strangers-turned-best-friends…seriously. The day helps him to forget about his limitations with Duchenne Muscular Dystrophy. It helps him to forget about his back pain. It puts an everlasting smile on his face.

To me, the Cincinnati Comic Expo, while entertaining, is challenging and exhausting from start to finish. The day is physically taxing, emotionally tiring, and oftentimes downright frustrating. I sigh thinking of the effort involved for simply getting Alex dressed in costume, out of bed, and out the door. I cringe with annoyance thinking about locating accessible parking, navigating through oblivious crowds, or any other inconvenience in the world of immobility. I say this because where before I could dress Alex easily, now requires a nearly continuous and complex series of pulls, lifts, pushes, and turns of a body larger than mine. Throw in Alex’s desired one-piece superhero costume, and I quickly break out in a sweat while dressing him. This is followed by hoisting, positioning his heavy body to a place of seemingly disappearing comfort, and then grooming him to be ready for the day and challenges that await. After more than an hour, we then have the joy of looking forward to parking, crowds, and other challenges at the Expo.

Sigh. Bad attitude, I know. But, please keep reading.

Upon arrival to the downtown venue, we found a nearby parking garage and predictably drove to the highest level because the spattering of handicapped parking spots were already full. We maneuvered Alex’s wheelchair out of the van and onto the parking stripes partially covered by the wonderful parking job of the adjacent car. We encountered a rickety elevator too small to enter that forced us to traverse five levels of ramping while continually cautioning cars from hitting us (note: we found a more accessible parking garage AND a working elevator on Day 2 of the Expo…thank you, 84̊ 51ꞌ Building!). Upon safely reaching ground level, we navigated our way to the Expo entrance only to find stairs and yet another long detour for wheelchairs.

Inside, we found thousands of people more concerned with finding that rare comic book, unique t-shirt, or collector’s pin rather than allowing a young man in a wheelchair the chance to simply drive. We politely and continually redirected those who failed to simply look down to avoid collision. We saw costumed fans enjoying hot dogs, pizza, popcorn, and fun drinks, while we patiently worked to feed Alex a bite and then wipe his lips after every one. After being told straws were no longer provided at the event for environmental reasons, I tilted a water bottle to his mouth and tried not to pour it down his face, but did anyway. We ignored the frequent stares of those unfamiliar with a young man in a wheelchair with portable sip ventilation.

Sigh. Such is life with Duchenne. As much as you learn to deal with it, it’s still frustrating at times.

Then, after fighting the crowds, we made our way to celebrity row. There, an abundance of celebrities sit behind tall tables that are positioned in front of black curtains with elaborate posters featuring the actor’s name and photograph. In front of the tables, signs post the actor’s window of availability as well as cost for an autographs, selfies, or both. Highway robbery, if you ask me. Besides, they’re basically all the same, right?

Was I ever wrong.

Alex had selected Manu Bennett for his ONE autograph. I had no idea who Manu was but just smiled my support of Alex’s dream to meet a celebrity. As Alex led us to the line for Manu, I could see the crowd ahead and my frustrations soon began to mount their offensive. The line was long, about fifty people deep and snaking through several switchbacks taped on the floor. Simple for most navigators, but awkward for wheelchairs. I subtly shook my head at the situation and sighed.

We then waited.

And waited.

And waited.

It had been over an hour already and it seemed the line was not moving as fast as it should. Although we met many interesting people, I wondered What could be taking so long? Was it really worth it? Someone ahead then relayed that a few dealers had brought a boatload of items for Manu to sign and certify, which extended our wait time. I noticed a sign posted that Manu would only be available for another 20 minutes. I counted the number of fans before us and calculated our chances. My frustrations mounted on top of the ones I already had brought with me that day.

Are you kidding me? I thought. We wait all this time and then NOT get an autograph!?

“Dad, we’ll get one. Just be patient.”

I looked to Alex. “Sorry, did I say that aloud?”

“Yes!” Alex shook his head in mild embarrassment, and then sipped his ventilation.

I settled myself and focused on Alex’s genuine excitement. I still could not see the value of the autograph, but a deal’s a deal. Be patient. This was for Alex, I told myself.

Soon, our position in the line had approached the celebrity table. And, go figure, Manu’s handlers announced he would be leaving for a photo shoot and be back in an hour. I swiveled in frustration before one handler noticed Alex and said, “but...after this young man!” I sheepishly smiled our thanks and swallowed my impatience. I then opened my wallet, voiced apology, and paid the requisite fee, silently protesting the charge as ridiculous. Alex asked me to get his empty Arrow DVD case for Manu to sign. I did, and then handed the case to Manu.

“Ahhh, you’re an Arrow fan, I see!” Manu exclaimed in his rich New Zealander accent.

Alex beamed that a celebrity actually talked to him. I waited politely.

Manu signed the movie and then, after some chit-chat, reached for a picture of his character Deathstroke (Alex told him he loved Deathstroke). He signed the picture as well, while I whispered to the handler we only wanted ONE autograph. The handler shook his head and dismissed my cost concerns. After some more chit-chat between fan and actor, Manu stood up, walked around from behind the table, and asked Alex if he wanted a selfie, too.

I immediately looked to the handler who had anticipated my concern and dismissed it a second time. Relax, man, he expressed with just a glance.

I turned back to Manu and Alex, who were talking and lost in their own world.

And there, they struck me.

Before me was one of the most beautiful, personal, exchanges I had ever witnessed. Manu had squatted to wheelchair level, ignoring all eyes upon him. He reached out and then gripped Alex’s hand like they were blood brothers. He held it tight while they talked. Manu listened as Alex shared his life with him. Alex told him about being adopted from Romania. He shared how he lives with Duchenne. Manu smiled, nodded respectively, and leaned close. He told Alex to stay strong, be brave, and keep being the awesome young man he could tell that he was. While tears formed in my eyes watching this exchange, Manu and Alex posed for a selfie taken by the handler. Alex’s joy was beautiful. I was so happy he could meet one of his heroes.

They were not done.

Manu then turned again to Alex and explained what he was about to do. He told Alex they were going to touch noses and then foreheads, close their eyes, and breathe deeply together, intimately sharing the air they breathe.

“This is called a Hongi,” Manu explained quietly. “It is native to my homeland of New Zealand and is shared amongst friends to exchange the breath of life and the sharing of souls.” He waited until Alex understood, and then asked. “Are you ready?”

Alex nodded.

Manu and Alex then touched noses and slowly joined foreheads. They closed their eyes and breathed deeply, Manu’s breaths clearly stronger and Alex following Manu’s lead as best he could. Manu then whispered, “Use my breath to give you strength, as yours will do the same for me.”

Alex and Manu continued breathing like this for nearly a minute. I wish I had the nerve to take a picture, but I was too struck by awe and respect to do so. Those in line behind watched silently as well. It was truly magical.

When Alex and Manu finally parted though still holding hands, you could see the shared experience had affected them both. They held eye contact for an extended period. I stood by with an everlasting smile. What crowds? What frustrations? What Duchenne?

THIS was incredible.

THIS was back pain taking a back seat and frustrations melting away.

THIS was a reminder of our shared humanity, no matter how famous or able or seemingly overwhelmed.

THIS was life as intended. Shared. Beautiful. Giving.

Manu eventually stood, smiled, and then quietly disappeared behind black curtains to his scheduled photo shoot.

Alex and I sat stunned for a moment trying to comprehend what just happened. We looked to each other, smiled in amazement, and then pivoted to roll away. Alex held his smile and forgot about his back pain. I held my smile and walked with renewed energy to meet anything the Cincinnati Comic Expo had to offer.

As we approached another table, Alex asked, “Can I get another autograph from someone else?”

I chuckled at his renewed attempt and then shook my head.

“No, one is enough.”

One was more than enough.

Note: On Day 2 of the Expo, Alex rolled by Manu’s table again, hoping to chat. The line was long and we debated if we should wait. His handler noticed us and pulled us to the front of the line. There, a second time, Manu stopped what he was doing and came out to talk with Alex. Their conversation concluded with another Hongi as if they were friends for life.

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ONE POINT

7/20/2018

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Imagine, if you will, a 4-foot 10-inch tall young man tipping the scales just north of eighty pounds. Envision his white jersey top gaping over his scrawny build with silky blue shorts draped mid-thigh above knee-high tube socks. Close your eyes and picture him sprinting down court proudly representing his 7th-Grade basketball team. Everything he had planned was certain to come true. Everything he had hoped for had fallen into place just as predicted. THIS was his time to shine. THIS would be the defining moment propelling him to basketball greatness. He could feel it. He could sense it. He could see the highlight reel rolling in his head as he led the game’s first fast break following tipoff. Nothing would stop him. The stars had been aligned.

Or so he thought.

Moments before, the basketball had fallen into his hands as undoubtedly foretold by a popular 1975 book titled Biorhythms. For those unfamiliar, the then best-seller provided research, charts, and graphs, as well as dates and times for when our lives would be at their peaks or valleys. All we had to do, the book contended, was recognize our rhythm, align it with the books graphs and charts, and watch the unfolding of our certain success.

The young man had studied the book diligently. He charted his rhythms, his ebbs and flows. He reviewed his team schedule and circled the date when his marginal talents would certainly intersect with guaranteed greatness. The perennial bench-warmer then convinced Coach Bailey to give him a shot at starting because it would be the night-of-all-nights in junior high school basketball history. The young man ignored that the normal 7th-Grade starters (who were quite good) had previously beaten the same opponent by over 50 points a couple weeks prior. He failed to hear Coach Bailey explain how he wanted to allow others a chance to start a game given the right opportunity. Regardless, the young man counted the minutes until tipoff. This would be his night!

After teams introductions with spotty loudspeaker and crowd fanfare, the team huddled and put their hands together waiting for inspirational words from Coach Bailey. They soon broke with a cheer and the young man trotted confidently towards midcourt ready to claim his spot. He jockeyed for pre-tip positioning alongside his taller teammates and opponents. He took a deep but excited breath, and then waved discreetly to his Mom sitting in the bleachers. He then awkwardly held his hands high in advance of tipoff. This was his moment, he was sure. Biorhythms had predicted his success. He silently willed the referee to start the game and toss the basketball skyward.

As if meant, the basketball tipped his direction and fell into his open arms. He buzzed with excitement as he cradled the ball, bent over in protection, and then shook off any others fighting for the opening tip. A moment later, remembering his certain destiny, he turned and dribbled down the court, starting the game’s first fast break.

I often recall this moment when Duchenne overwhelms me as Alex’s caregiver. Like basketball, there are days when I’m on top of my game, handling anything the beast cares to dish out. On those days, I feel superhuman, like I’m leading the fast break. I feel like I can make any shot from anywhere on the court. I feel like NOTHING about this disease could bring me down. I help Alex with strength and determination. I instill in him confidence and normality. I help him to push beyond any emotional or physical pain and despair that threatens his day. On those days, cleaning and grooming Alex is an honor and feeding him is a blessing. Tears that threaten or fall from his eyes are wiped and absorbed with love and reassurance that everything will be okay. Creativity flows from my brain with ways to entertain and encourage, or simply listen and support. I feel like THIS is where I am meant to be. THIS is my calling, my duty, and my honor. On those days, nothing can stop me. The game is my control.

But, like life in general, caregiving for Duchenne does not always happen the way you plan. Sometimes, the tough days smack you without warning, triggered by the slightest of events like a spilled drink, a broken wheelchair, or a 3AM poop. For me, sometimes it’s seeing a father and son playing catch, a kid riding a bike, or your son’s friends living the life you thought he’d lead. Sometimes, it’s your lack of sleep, strained back, or shortened temper that tips the scale. Sometimes, it’s the silliest or stupidest of things that seem so significant at the time and then snowball for no reason other than fatigue or spite. On those days, I don’t like myself.

And then…you see a burning candle post on Facebook.

If you’ve seen them, you know what I mean. In our Duchenne community, they show yet another young man who has lost his battle well before his prime. For whatever reason, these posts seem to be happening more and more frequently this summer. They’re disheartening. They’re sobering. Sometimes, they leave you with the smack of reality and a realignment of attitude. Other times, they leave you feeling vulnerable to the horrors of this disease. The candles make you question your ability to make a difference in the losing battle. You feel helpless and sometimes alone.

You read of beautiful lives taken too soon, some as young as 13 years old. You learn of Christopher, Devin, Brayden, and Matthew. You smile at the shared memories of Tristen, Kelton, Justin, and Joshua. You shake your head at the passing of Keith, Keshav, Ross, and Dallas. You whisper a comforting prayer for young men like Ben, who is currently surrounded by family in hospice. You sigh because such young men square you to the realities of Duchenne. They remind you a cure has yet to be found. They remind you our time together is short and limited. Such thought can leave you paralyzed with sadness and despair.

But each passing also brings pause to what really matters in life, and how we should all live. Each passing pulls me back from the frustrations of the daily grind. Each passing reminds me to let go of the moodiness, the pettiness, the selfishness. Each passing reminds me to LIVE the life we have with one another, while we have it!

This cannot be more clear.

Most recently, it was the passing of 16-year old boy named Danny that realigned me. Like many young men with Duchenne, Danny lived life to the fullest. He smiled often and wide. He was well-liked and loved by many. He was a passionate Rutgers sports fan. He had a bucket list that included items like watching a sunset, flying a kite, and participating in a water balloon fight, to name a few. He hoped to make snow cones, play mini-golf, and wash the car. He wanted to go fishing, find a four-leaf clover, and to go through a Sonic drive-thru for his favorite order of tater tots and a Diet Coke. Simple requests. Some left unfulfilled. All with intention of simply enjoying life.

Danny’s candle reminded me of life’s preciousness we too often forget. It reminded me to push through life’s rough spots and cherish our time together. It reminded me to take a deep breath, to enjoy the moment, and to laugh and love. It reminded me to live as Danny’s family asked.

#makeeverydaycount

It’s frustrating that it takes a burning candle and a hashtag to remind me of life’s importance. It bothers me the daily grind sometimes overshadows the blessing lying before me – smiling, laughing, and looking to me for direction, inspiration, and hope. It frustrates me I become wrapped up in the world of Duchenne, sometimes seeing only the negative when the positive is but a smile away. Life is not always what you expect. It isn’t planned, settled, or predetermined. It’s certainly not led by published biorhythms. Our lives, and our abilities to live to our fullest, are up to US…all of us…together. We can make it incredible if we try, even in the toughest of times, or we can’t.

It’s that simple.

A couple months ago, Alex hurt his back the night before his senior honors assembly. The pain was so severe that Alex could not move more than a wiggle, and he was confined to bed for more than a month. He realized his misfortune would cause him to miss the honors assembly as well as his high school graduation a few days later. He was heartbroken because he so desperately wanted to be with his friends and share in the experiences. He so desperately wanted to be like everyone else, a kid celebrating life’s achievements. As parents, we felt helpless that he would miss one of life’s grand passages in high school graduation – yet another life milestone stolen by Duchenne.

My frustration with this damn disease was near an all-time high.

Then, some in our community learned of his situation. Within a matter of hours, friends, neighbors, teachers from Alex’s Preschool to Senior Year, the High School Principal, an Assistant Principal, and even members of West Clermont High School’s marching band learned of Alex’s condition and rallied together to bring graduation to him! To our house! In his bedroom! Once assembled on our driveway, the marching band started playing the school fight song and led the procession through our back door, into our house, and upstairs to Alex’s bedroom! His smile of surprise, joy, and appreciation was priceless!

The band played the graduation hymn as Principal Gebhardt presented Alex with his academic and achievement awards. His friends offered their support and fist bumps of strength and encouragement. Teachers recounted stories of their days teaching Alex and his friends. It was a beautiful afternoon! Principal Gebhardt then came back a week later (in full graduation cap and gown) to present Alex with his official diploma. A couple days later, Alex was on the evening news sharing the incredible story and what it meant to him.

The energy that afternoon was incredible! Smiles in that room were abundant! Not just for Alex, but for seeing the joy our community created. It’s beautiful what can happen when we come together for one another. It’s amazing to think of our potentials. We cannot do life alone.

I wish I would have learned this lesson long ago when I raced downcourt towards the 7th-Grade basketball game’s certain first points. I wish I would have understood that launching a premature, one-handed, layup from the foul line a la Julius Irving-style did not provide a strong foundation from which to build my basketball career. I wish I would have known to look for the open man and pass the ball. I wish I would have known that biorhythms foretold in a best-selling paperback were no match for teamwork and togetherness.

Then again, when the basketball clanged hard off the backboard and awkwardly off the rim, I should have known it would be a long day. I should have known the game would be a grind, as is life. I should have known the game, and life, never goes as planned. I should have known the best we can hope for is fortitude to push through the difficult days (and nights)…with family, friends, and community to lighten the load along the way.

I should have known.

On that day back in 1976, during that first and only ever start in my esteemed basketball career, I scored one point.

It may have been the most meaningful point of my life.

(huh, come to think of it…perhaps the biorhythms were right after all)

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WAITING, PANCAKES, AND BACK IN THE DAY

4/17/2018

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Back in the day, a teenage boy waited on the corner of Cassingham and Elm. The sun had already slipped below the surrounding residential horizon, and the skies had already changed to shades of gray and some black. In the distance, stadium lights pushed skyward and reflected off low clouds hovering over the small community that had gathered for a Friday night high school football game. Pregame sounds from marching bands, announcers on loudspeakers, and enthusiastic cheerleaders filled the air and carried to the street corner where the boy patiently waited for a girl he had asked to the game.

What if she doesn’t show up? His mind raced with worry. What if I say all the wrong things? He practiced lines he had rehearsed in his head. He repeatedly scanned the sidewalks for the girl’s arrival. He took many deep breaths to calm himself. The wait was agonizing, yet hopeful.

Soon, the distant cheers grew louder and he realized the football game had started. Am I at the wrong corner? He wondered. Did she have a change of plans, or a change of heart? He paced about in small circles, nervously wiping his sweaty palms across his pants, while the streetlight above lazily changed from green to yellow to red, and then quietly back to green. Each minute felt like hours. Each light change reminded him of his solitude. Each distant cheer added to his isolation.

They weren’t a couple, by any means. Far from it. Although he had a crush on her since the Fourth grade, the game would be their first date. He wondered if he should hold her hand when they walked to the stadium. He fumbled through his pockets to make sure he had enough money to buy her a Coke at the game.

Before long, he heard the marching band begin its halftime performance, and the boy realized their meeting would probably not happen like he had hoped. It was getting late. He realized the girl, for whatever reason, would not be meeting him at the corner. Perhaps she thought we were to meet at the game, he thought. He sighed with resignation, and then made his way to the stadium alone, yet still hopeful.

The boy entered the loud stadium and walked towards a group of friends and other restless teenagers gathered along a low fence line surrounding the end zone. Where have you been? His friends shouted. The game is almost over, they laughed. Then, they pointed.

The boy followed their direction and saw the girl. She stood smiling and laughing, seemingly lost in conversation with another boy as if they were an established couple.

The boy’s heart broke.

I share this story with Alex, every now and then, to help him understand life's disappointments, especially when it comes to girls. I tell him it happens to everyone. I tell him you gotta roll with the punches and keep moving forward no matter how hard it can be. I tell him disappointment is not a reflection on him, it’s just the way things happen sometimes. I tell him that someday he’ll find the one. It just takes time. He’ll shrug and nod understanding. He’ll smile and try his best to move on. But, you feel his pain. You feel his loneliness. You also feel his frustrations of living with Duchenne.

I share this story because he had garnered the nerve one day to ask a girl to visit him at home and play some video games. She agreed, and they set a date a couple weeks in advance. As you can imagine, Alex counted the days to until her arrival. He planned out what video games they would play or movies they would possibly watch. He told me what shirt he wanted to wear.

The day of the meeting, he asked me to dress and groom him, and get him ready. He asked me to hoist him into his wheelchair hours earlier than needed just in case of her early arrival. He made his way downstairs and rolled around the house waiting for the visit to begin. He stared out the windows and, more than once, swore he saw her car driving up the street. After a while, weaves of wheelchair pacing had grooved into the carpets and the planned meeting time had long since passed. Still, he waited…hopeful.

A couple hours later, the young woman texted that she couldn’t make it, and apologized for not coming to see him. He had been all dressed up and ready to go. He debated if he should go back upstairs alone. Seeing his disappointment, I took him to the movies and then IHOP for some late-night pancakes.

There, Alex shared his heart. “I wonder if I’ll ever have a girlfriend. I mean…I can’t walk, YOU have to drive me everywhere, and YOU have to feed me every bite when I eat. I can’t do anything by myself! I can’t go anywhere by myself! If someone ever dates me, they date you, too!” He looked away, as if searching for something, anything to prove he was a teenager like anyone else.

He turned back to me and opened his mouth for another bite of pancakes. I obliged, and then wiped syrup from his lips.

As any parent, you give support as best you can. You tell him not to worry. You tell him it’s not just him. You tell him everyone goes through tough times and that many experience disappointment or heartbreak. But, as a Duchenne parent, these moments tear you apart. Sure, teen angst is common throughout anyone’s adolescence. Sure, we’ve all been there. But, with Duchenne, you hear him. You feel him. You know what he is thinking. He wants to be like everyone else, in a world where the odds of having Duchenne are roughly 1 in 3500. Despite your words of understanding and comfort, his frustrations of immobility and complete dependence for everything are real. You understand and let him know that you do.

And, it’s not just with girls. Feelings of social isolation happen with his guy friends, as well.

For example, Alex recently invited six young men to join him for a movie and a sleepover to celebrate his 19th birthday. He had hopes of laughter, pizza, hoots and hollers late into the night, if not morning. He imagined company and conversations with people other than Mom and Dad for a change. Nights with friends make him feel a part of it all. He joked that he hoped his friends wouldn’t cancel like the girl he had invited a couple of weeks before.

Then, unfortunately, they did. One by one.

Days leading up to the party, two friends canceled because of conflicting Spring vacation plans. The night before the party, another canceled because of work commitments. Then, while grooving his wheelchair in circles and waiting downstairs for the remaining guests to arrive, two more canceled for last-minute college or family obligations. The sixth, and last, invitee then texted that he couldn’t make it because he didn’t have a car and couldn’t get a ride.

Alex looked at me and simply shook his head. “I’m cursed,” he said.

Just like that…birthday plans with six friends…dashed and nearly destroyed. We had to do something. We called the sixth friend and told him we would pick him up so Alex would have at least one friend at the movies with him other than Dad. After the movie (Ready Player One), we picked up another friend after his work shift had ended. Determined to enjoy his party, Alex and his two friends stayed up most of the night celebrating another year.

Sigh. Crisis averted.

What many may not realize is the magnitude of visits to a kid with Duchenne. Any visit, anytime, anywhere, is treasured. Any visit, anytime, anywhere, is revered. If a visit is possible, our family makes time for it to happen. We do because, with Duchenne, as your son’s world shrinks, his friends’ lives grow exponentially. As he becomes increasingly dependent for everything, his friends become increasingly independent and launch into active lives. You can’t blame them. In fact, you cheer for them, because they have become like family over the years and their success is encouraged! Still, for the kid with Duchenne, the separation in young adulthoods becomes too swift. It happens too fast. The gap, sadly, grows wider…and expands every day.

Family can fill the gap, and kind neighbors as well, but it’s just not the same as friends. We wish we could do more.

So, as you can tell, we are entering a transitional period in Alex’s life. As he approaches high school graduation, many of his friends are moving on to their next adventure. Some are heading to college. Some are beginning new jobs. Either way, they are moving onward as well they should.

But, unfortunately for Alex, the friend-market is thinning and will undoubtedly become more so in the coming years. He may meet new friends when he is out and about, but that will become harder and harder as his Duchenne advances and he spends most of his time at home with Mom and Dad. He’ll also chuckle and shake his head as our aging heads inevitably tilt back asleep while watching a movie with him. When that happens, he sometimes calls friends and family in other states to stay connected at any hour of the night.

God love him.

It’s times like these that tap your heart and encourage you to continually tap his. Despite his restrictions with Duchenne, you encourage him that what matters most is his spirit for life and his belief in himself. You tell him that you love him and always will. You encourage that what matters is happiness and love for one another. You pump him with self-confidence to face the difficult days, because you know there will be many. You do everything you can to keep his chin up, despite his declining physical abilities. You laugh with him as you watch his favorite sit-com or YouTube video. You take him to a park or a bookstore or a Reds game and hope for a win. You do anything of the sort because you want to give him the best life he can have. You do because YOU see the gift he brings to the world, and you hope others see it as well.

You do because he needs the connection,

…and deserves as much.

Over the pancakes at IHOP, I shared my story again with him about the boy waiting at the corner. I told him that although the girl did not meet him at the corner, she is a good friend to this day. I reinforced that although friends may come and go, good friends will always be there for him in the years to come.

He smiles, shakes his head, and says…

”Thanks, Dad. But, do you realize how many times you've told me that story!”

Update: The young woman who had to cancel her visit the day of the IHOP pancakes is upstairs at this very moment as I write…laughing with Alex and playing Madden 2018. They are good friends, and the laughter coming from his room couldn’t make me happier. You go, Alex!

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THE KEY

1/26/2018

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For the past 17 years, I have held our son Alex’s hand every night as he falls asleep. It’s a special time between father and son as we lie on our backs and talk to the ceiling. We talk about life, girls, video games, and anything weighing heavy on his teenaged mind. I listen and offer guidance where I can as Alex opens his heart and bares his soul. Over the past several years, our most poignant discussions have centered on one question about life with Duchenne Muscular Dystrophy.

“Why?”

This is not an easy question to answer as Duchenne is cruelly progressive and terminal. His question is heartfelt, personal, and truth-seeking. It expects attention, understanding, and honesty. The question is also universal as it relates to human suffering.

I've tried to capture the essence of this question and our discussions in The Key. From Jerusalem to Milan, the foothills of the Italian Alps to Bellagio and Lake Como, The Key propels readers on a desperate search for truth about Jerusalem's destruction and human suffering. The Key challenges readers to question God's Plan, our responsibilities to one another, and the future of humanity through the eyes of a man seeking revenge and another living with Duchenne Muscular Dystrophy.

I hope you enjoy it!

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THE KEY

“Thrilling!” “Action-Packed!” “Thought-Provoking!”
“A Remarkable Story!”

From Jerusalem to Milan, the foothills of the Italian Alps to Lake Como and Bellagio, The Key propels readers on a desperate search for truth about Jerusalem’s destruction and the problem of human suffering. A sequel to The Cave, David Click’s debut novel, The Key challenges readers to question God’s Plan, our responsibilities to one another, and the future of humanity through the eyes of a man seeking revenge and another living with Duchenne Muscular Dystrophy.

“Perhaps the reason for suffering is much deeper than faith and a plan. Perhaps suffering is more than lightness and darkness, or blessing and sacrifice. Perhaps the reason for suffering can be found inward instead of outward.” - Excerpt from The Key

Anticipated release: February 2018 (Adger Publishing, LLC)

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NEXT THURSDAY CAN WAIT

11/23/2017

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Duchenne Muscular Dystrophy is a most unwelcome beast. Without invitation, it steals your son one muscle fiber at a time, laying claim to his legs, arms, and torso for starters, then moving on to his lungs and heart without care. It attacks his ability to simply breathe, eat, or control his body in manners most of us take for granted. It holds complete and total disregard for his hopes, dreams, or fears, as well as your own. It relentlessly claims new territory as it camps, spreads, and seeps into every aspect of your life, every day and every night.

Most unwelcome indeed.

As it will be next Thursday, one week after Thanksgiving, when we visit Cincinnati Children’s Hospital to discuss Alex’s latest round of testing and evaluations performed last week. Next Thursday will be a long day of waiting and listening in a windowless clinic room where limits of patience, hunger, and emotions are tested. It will be a day filled with administrators, technicians, nurses, and doctors specializing in pulmonology, cardiology, neurology, and endocrinology. Throw in dietitians, physical therapists, social workers, and palliative care specialists, and the day will be like a large family gathering of revolving doors, serious talks, and some tears. We’ll sit and take it while doctors share Alex’s steady decline in nearly every measurable category related to this incurable disease. We’ll sigh deeply, hold hands, and wish it was all a dream.

But, it’s not.

It’s life with Duchenne.

Next Thursday, we’ll see old friends we have known for years like Kenny-Benny in cardiology check-in who always shares smiles and laughter with Alex. We’ll see Dr. Wong in neurology, as well as her assistant Andrea, who have been with Alex since he was 3 years old. We’ll see Drs. Rutter, McCormick, and Garbani, and many others at our home-away-from-home located at 3333 Burnet Avenue.

We'll hear reminders of Duchenne’s unstoppable progression. We’ll listen to Dr. Sawnani, Alex’s pulmonologist and all-time favorite doctor, describe Alex’s declining lung function with heartfelt (though sometimes difficult) honesty. We’ll listen to Dr. Ryan, the cardiologist who works to protect Alex’s strongest muscle of all. We’ll listen as Alex shares his hopes and dreams with Dr. Widener, his palliative care doctor who is tasked to help Alex live as comfortably as possible as life gets tough. All said and done, it’s a long and exhausting day, one that usually leaves our heads full and our hearts heavy.

But, next Thursday is just that. It’s NOT today! It’s not turkey, mashed potatoes, and green beans. It’s not Italian wedding soup, sweet potatoes, and stuffing. It’s not creamed corn casserole, tossed salad, and homemade bread! It’s not full bellies, dishes, and football! It's not, because today is OUR day! Next Thursday can wait!

I say this because today we focus on the good in life with Duchenne. Although next Thursday looms heavy, we have today. It’s precious. It’s now. And, it’s ours to enjoy and indulge. Let the feasting begin!

And today, this Thanksgiving, I am thankful for many things currently in our life with Duchenne.

Things like…

…seeing life from an incredible perspective I never would have dreamed
…witnessing Alex’s genuine love for everyone…seriously, everyone!
…watching him approach anyone with confidence and a smile
…seeing the hope in his eyes as his hand loosely curls for a fist-bump
…seeing his genuine joy for attending school and being with friends, teachers, assistant principals, security guards, and custodians
…listening to his hopes and dreams about life, girls, and everything teen-aged in between
…watching him work the phones in search of a friend to sleep over
…going to his school to help him use the restroom or sit him back in his wheelchair
…helping him with the simplest of tasks we often take for granted
…calming his hopes, worries, and fears
…helping him to understand life and death
…wiping his tears
…encouraging his dreams
…sharing his joys
…sharing his love
…hearing his laughter
…experiencing his smile
…holding his hand while we sleep, and
…hearing him say I love you every night.

On a personal front, I am also thankful for…

…Friday Night Pizza and Beer when Kristy and I carve out time to talk about life, Duchenne, our hopes, and our dreams (as well as listen to classic rock and enjoy a cold one or three)
…writing, fantasy sports, Sudoku, and hummus - my escapes from the daily grind
…friends who take the time to ask about Alex
…my coaches who encouraged me to do my best and never give up
…my parents who demonstrated commitment and love
…our daughter who fills us with pride and joy
…my wife who loves and completes me (and tolerates my quirks)
…our little family who travels this challenging road together.

For Alex, I am thankful for…

…Star Wars, need I say more?
…superheroes, who give him hope in the fight of good vs. evil
…video games that allow him to escape and conquer
…movies that entertain and expand his imagination
…his friends Zach, Brendan, Adam, Liam, and Ben, to name a few
…his secret crushes who shall remain nameless
…neighbors with driveways who take the time to talk and laugh with Alex
…anyone who allows Alex to pet their dog
…waiters and waitresses that share in Alex’s smile and laughter
…zoos, malls, parks, museums, and theaters or any open space for wheelchairs
…concrete, asphalt, or any other smooth surface to roll unobstructed
…storefronts without a step
…cell phones so Alex can call us whenever he needs
…Alexa for voice-activated calls (as his arms become too weak to hold a phone)
…a power wheelchair so he can get out and about
…a handicapped accessible van
…a Hoyer lift to transfer Alex from his bed to his wheelchair, and back again
…Bi-PAPs, sip vents, and cough assists
…technologies and treatments that give us another day
…caring and compassionate doctors, nurses, administrators, and technicians
…our little family
…Our son who shows us how to live!

So, there you have it. A brief and brighter side of living with Duchenne, as I see it. Although next Thursday will undoubtedly remind us of the monster’s sadistic and progressive march, Alex helps us to realize we have today and we have each other! And, nothing is more beautiful when you really think about it! For THAT perspective, we give thanks!

Life sometimes isn’t always what you expect. It isn’t always what you dreamed, hoped, or planned. But, it’s life! It’s your life! So, find the good, be thankful, and live with love!

We see no other way.

HAPPY THANKSGIVING EVERYONE!

Please pass the gravy!

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A TIMELY TEXT

10/20/2017

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We have attended several West Clermont High School sporting events this fall, including five boys soccer matches, two football games, and one girls soccer match to be exact. We do so because Alex is a social kid who yearns to stay connected with others despite his limitations living with Duchenne Muscular Dystrophy. We do so because he enjoys meeting and interacting with people from all walks of life. We do so because he enjoys watching sports, not necessarily for the competition, but for the whirlwind of activity that surrounds it.

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.

Life.

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!”

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THE LAST FIRST DAY

8/29/2017

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Well, tomorrow is the day. Where did the time go? Tomorrow signals an ending as much as it does a beginning. It brings sorrow as much as it does excitement. It’s the groaning of first-day pictures followed by the enthusiasm of renewed friendships. It’s the cold reality of learning amidst the thrill of seeing who sits around you. It's the return of routine, day after day after day. It’s noisy lunchrooms, crowded hallways, and slamming lockers. It’s marching bands, mascots, and Friday Night Lights. It's tradition. It's American. It’s back to school!

If it was only so simple.

You see, tomorrow also marks the start of our son’s final year of high school, and most likely his final year of public education. Alex will be a Senior this year, which is incredible to believe. It seems only yesterday we brought home a little boy from Romania, wide-eyed, apprehensive, yet smiling. It seems only yesterday we enrolled him in Clough Pike Elementary with simple worries of Will he make friends? Will he be a good student? Will he color within the lines? It seems only yesterday we sat down with his preschool teacher to share his challenges with the still immature beast known as Duchenne Muscular Dystrophy. It seems only yesterday we watched him waddle down the hallway, eager to catch up to his classmates, while we held our breath he wouldn't fall.

It seems only yesterday…

Like any student, Alex will awaken tomorrow with excitement, only he won’t jump out of bed or leap down the stairs. He won’t grab a bite to eat, sling a backpack over his shoulder, and dash outside to a friend’s waiting car. Instead, Alex will lie still in bed waiting for us to remove his BiPAP ventilation from his face. He will wait for us to help him use the restroom, select what to wear, and eat breakfast. He’ll endure turning, twisting, and lifting as we pull clothes onto his body, secure a sling beneath him, and then hoist and roll him across the room before lowering him into his power wheelchair. He will then be repositioned until his comfort is achieved. He will sit patiently while we brush his teeth, comb his hair, and position his slipper-covered feet on the foot tray. After smiling for traditional first-day pictures, Alex will roll into the minivan, wait while we buckle him up, and then urge me to get a move on it, because he’s got people to see!

As we pull into the school parking lot, his worries may surface a little for the challenges he’ll face. But, knowing Alex, he’ll push them aside in anticipation of finding students, teachers, administrators, or staff he hasn’t seen all summer. He’ll eagerly roll out of the van, endure yet another round of lifting, repositioning, and feet placement before I publicly embarrass him by using Dad-spit to wipe crusted jelly from the corner of his mouth. Then, before rolling away into the crowd of nearly 2,400 other students at the new West Clermont High School, he’ll turn to me and ask for a hug...and I will gladly oblige. He’ll nod he’s ready, but then ask if it's okay to call when he needs help.

You bet, Bud. Go get ‘em!

With some apprehension, Alex will pivot his power wheelchair and zoom away, hopeful to fit into the social scene just like anyone else. As he disappears into the crowd on his last first day, I’m not saying there will be a tear in my eye.

Sigh.

So goes the easy part of his school day.

I say this because the first of his calls for help typically comes within an hour or two of dropping him off. Alex will call for me to either lift him back in his wheelchair because he is uncomfortable (note: I would NEVER expect a teacher to risk personal injury lifting a 210-lb. young man), help him use the restroom (a bottle), or bring him home because of back discomfort (believe me, it’s real!). Any of these reasons is understandable considering his Duchenne, especially since Alex's last spinal x-rays showed compression fractures now in EVERY thoracic and lumbar vertebra, except L3. Add to the daily challenge his steadily declining lung function, and it’s no surprise the day wears on him. Yet, he is determined.

I can only imagine his discomfort while he sits for long periods of time in the same position, unable to adjust. I can only imagine him trying to grin and bear it so as not to disrupt his class or interrupt a teacher. I can only imagine Alex debating whether he should call me. I can only imagine his frustration when he decides to call, but then cannot bring his cell phone up to his ear. I can only hope someone helps.

His school challenges won’t end there.

Because of Duchenne, Alex must ask for support to…

…open closed doors
…exit class early (i.e., wheelchairs and hallway gridlock do not mix well)
…push buttons on the school elevator. (Note: his new high school has three floors, and his class schedule sends him from floors 1 to 2 to 3 to 2 to 1 to 2 to 1…every day. If you’re counting, that’s 14 separate pushes for someone who cannot reach the buttons and must seek help for every push).

In the classroom, he must ask for support to…

…access his backpack, which he carries on the back of his wheelchair (though this may be replaced by a portable ventilator this year)
…place a pencil in his hand
…take notes (his writing is very slow)
…open a textbook
…hold a textbook
…turn a page
…hold a page
…take tests
…take quizzes
…use a computer
…perform class projects
…get the teacher’s attention (i.e., Alex cannot raise his hand)

If he makes it to fifth bell (lunch), he must ask for support to…

…carry a lunch tray
…select and receive his food
…scan his student ID to pay the cashier
…EAT his lunch
…DRINK his water
…wipe his mouth
…brush crumbs off his shirt
…dispose of his lunch tray, and too often
…find someone to sit with him*

(*major kudos to his friend, Liam, who has helped Alex in the lunchroom in years past. Hoping their lunch schedules align again this year!)

Not surprisingly, after about one to two months of these daily challenges and Alex’s overall physical fatigue, the school day becomes too much for him to handle. That is when he typically transitions to Home Instruction, a program where a district teacher comes to our home a few days each week for one-on-one instruction with Alex.

In Home Instruction, Alex stays current and connected with his school. His class typically begins after the regular school day and lasts for a couple hours while he lays in bed. His teacher helps him to read books, discuss academic concepts, and take tests including rounds of state-mandated testing and even the ACT, all required for graduation. Home Instruction will then likely continue through the winter months due to cold temperatures and his fatigue, and then slide through spring towards graduation. The arrangement is not ideal for a social kid like Alex, but it works and has served him well for the last six years.

As tomorrow brings a new day, a new school, and a final lap in Alex’s public education, our wish for him is simple….keep smiling. While he lives with an unforgiving monster that steals a little of him every day, we are in awe of his approach to life. It’s beautiful. It’s remarkable. It’s Alex. His school year will be challenging, but we couldn’t be prouder of the young man he has become.

So, what’s his next step? The one after high school graduation?

Simply put…who knows?

With Duchenne, you focus on the present and let the future sort itself out as you go. You do what feels best for your son and consistent with what he wants out of life. You do anything to keep the smile on his face and the joy in his heart. We realize many young men with Duchenne further their education into college and beyond. Many others continue into successful careers. Some marry and live effectively on their own. Some get jobs. Some are vocal advocates. Some stay at home. It’s a wide range of possibilities. For Alex, we take it one day at a time, if not one moment at a time. Simply said, we will cross that bridge when we get there and when he’s ready.

Tomorrow, as I watch him roll into school on his last first day, I’ll now admit a tear will fall.

It will because this young man is happy...

...which is our ONLY goal for his education.

Go Wolves!

6 Comments

FIFTEEN YEARS IN

7/5/2017

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Fifteen years in since we answered the call. Fifteen years in since we picked up the phone to hear a Cincinnati Children’s Hospital neurologist change our lives. We barely knew her at the time, though she already knew our future better than us. She knew our hopes, dreams, and lives would never be the same. She knew the progression. She knew the heartbreak. She knew the pain. We just listened….in utter disbelief.

“Your son has Duchenne Muscular Dystrophy.”

Silence.

Every Duchenne parent remembers the call. Ask them about it, sometimes, and I guarantee you will witness a snort of incredulity followed by a shaking head, a deep breath, and faraway eyes. The call changes everything. It is stunning. It is unbelievable. It leaves you speechless, numb, and confused. It prompts denial. It suspends time.

Excuse me? Duchenne what? There must be some mistake.

Our call came on July 5, 2002, ironically the day after we celebrated Independence. The Children’s Hospital neurologist told us she knew about the diagnosis a couple days prior, but withheld the news because she did not want to ruin our holiday. Gee, thanks. With one call, our lives changed, our dreams evaporated, and our hopes vanished. The rest of that day was a blur, a confusing mess of realization and disbelief. I honestly cannot remember what we did other than sit and try to wrap our heads around what just happened. I can still feel the gut punch.

That day, dreams disappeared in a flash. Gone. Over. Done. The ones where I…

…caught my son’s fastball and then casually tossed it back,
…nodded my confidence from the bleachers before his crucial at-bat,
…encouraged him to “go long” before throwing the football,
…tested his shoulder pads with two fists before a big game,
…bumped against him as we battled one-on-one in the driveway,
…laughed with him around a campfire during a backpacking trip,
…steered a boat while watching him learn to waterski,
…tossed him the car keys and reminded him to not drink and drive,
…smiled with pride as he helped his sister move into her new apartment,
…thanked him for cutting the grass.

I could go on… The dreams were many, and sometimes still are.

Before the call, I saw Dad-hood like most Dads I knew growing up. I saw it through the eyes of my Dad and his Dad before him. I saw activity and vitality. I saw patient demonstration and loving expectation. I imagined sports, camping, fishing, boating, swimming, running, jumping, and climbing. I imagined Alex’s college, career, wedding, and children. I imagined everything life was certain to provide.

That all changed after the call. As we learned more about Duchenne, I imagined Alex…

…falling behind his peers,
…losing his ability to walk,
…using a power wheelchair,
…losing the use of his arms,
…losing friends,
…needing help to eat,
…needing help to breathe, and
…asking when he would die.

Fifteen years in, all of it has come true, just as I imagined, and then some.

But…it’s okay.

In fact, it’s more than okay!

With Duchenne, you see life from an angle you never would have otherwise. You see the preciousness of now and the beauty of togetherness. You thrive in the power of love and the healing strength of laughter. You receive sincere appreciation for always being there, be it sitting, standing, or sleeping alongside. You feel the strong connection of a loose handhold as well as the loving embrace of an armless hug. You absorb tears as well as heartbreak. You pick up your son as much as he picks up you. You give and receive absolute trust because you are his confidant, guardian, and best friend. You see bravery, in the face of Duchenne. You see your son, with eyes wide open. His and yours.

Rare gifts indeed.

When we hung up from the call, I feared life with Duchenne. I feared Alex’s inabilities, as well as my own. I feared its effect on him, as well as our family. I feared what he would be missing, and what we had lost. I worried about how we would manage the beast. I worried about the unknown and what I could not control.

Today, fifteen years in, we embrace it, despite what the monster may yet have in store.

We do so because we have one another…right now…

…and that’s all that matters.

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A PITCH TO HIT

6/8/2017

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Perspective helps you to understand the world, your place within it, and your responsibility to others. It enables you to appreciate what you have and focus less on what you don’t. It assists you to breathe easier and deeper, while letting go of frustrations and anxieties that can bog you down. It teaches you to appreciate every moment, as you should and while you can.

Yet, perspective can be finicky. It can disappear as quickly as it’s found. It can hide as easily as it appears. It can leave you if you aren’t too careful. It can stay away if you take it for granted. When you have it, you know it. When you don’t have it, you don’t know it. But, often, to get it back, all you need is to open your eyes and see it...right there in front of you.

For this Duchenne Dad, such perspective returned to me a couple days ago at the Baseball Fantasy Camp for Kids hosted in partnership with the Cincinnati Reds. The fantasy camp is a non-profit organization that provides an opportunity for young baseball fans with special needs, like our son Alex, to enjoy a day on the field with Major League ballplayers. Currently, Baseball Fantasy Camp for Kids is established in twelve cities with Major League Baseball teams, with plans for more.

We have attended the Baseball Fantasy Camp for Kids for many years and every time it delivers better than ever. Previous camps have connected kids with Cincinnati Reds players Zach Cozart, Devin Mesoraco, Homer Bailey, Shin-Soo Choo, and Todd Frazier to name a few. This year, the kids interacted with Scooter Gennett, Scott Schebler, Michael Lorenzen, and Patrick Kevlehan, who collectively supported and encouraged all campers and their families. Considering that Scooter later hit a record four home runs in a game just hours after this year’s camp, suggests the camp’s positive effect, even on Major Leaguers.

It’s a memorable day!

Over the years, Alex has played catch with All-Stars, hit against Major League pitchers, and laughed with Cincinnati Reds owners, including Bob Castellini. Every year, Alex talks with staff from the Reds Community Fund, Urban Youth Academy, and Cincinnati Recreation Commission. He enjoys silent, but animated, conversations and shenanigans with mascots Mr. Redlegs, Rosie Red, and Gapper. He interacts with parents and families of kids with mental and physical disabilities. He scores autographs, selfies, and fist bumps from Reds players throughout the event. To top it off, he poses for a baseball card imprinted with his picture, personal stats, and interests.

Fantasy Baseball Camp for Kids and the Cincinnati Reds do it right by these kids, and we cannot be more appreciative! But, what they may not realize it how far their influence reaches.

For me, the day brings needed perspective to our life with Duchenne. Although Kristy and I do our best to manage the beast, sometimes our perspective slips away within the daily grind of caregiving, be it turning, lifting, dressing, feeding, cleaning, wiping, washing, hoisting, listening, supporting, explaining, comforting…I could go on. Sometimes we lose sight of what we are doing as we swallow our frustration with Duchenne’s unstoppable progression. Sometimes we lose perspective of what we have when we see vitality…at the park, on the ball field, on Facebook, or wherever…and consider the life we thought we’d lead before Duchenne introduced itself. Sometimes, Duchenne simply gets the best of us.

That’s why a day supporting kids with a range of disabilities, some severe but all very real, reminds us where we’ve been, where we are, and where we are going. More importantly, it reminds us of life, and how to live.

For this reason, I cherish the Baseball Fantasy Camp for Kids. I smile when Alex’s best friend, Zach, serves as Alex’s Buddy and plays catch, fields grounders, and helps Alex wherever and whenever he can. I fill with pride as our daughter, Kaitlyn, supports Alex and many other campers with high-five’s, endless smiles, and positive words of encouragement. I beam like any proud parent as Alex confidently approaches home plate, grips a plastic bat loosely across his lap, and waits for the wiffleball pitch. Like any parent, I get nervous hoping he will succeed, and hold my breath until he does. That is usually the time when Alex glances to me as if to say…Relax, Dad. I got this.

Then, he connects!

Although his plastic bat barely moves because of Alex’s declining arm strength, the joy on his face is incredible to see as the ball bounces a few feet before him and he transfers his hand from the bat to wheelchair joystick. You’d think he hit a line drive as he drops the bat while zipping to first base, eager to beat the throw. Once safely on first, he’ll lead off the bag before the next pitch, and then zoom full-throttle to second base when the next kid connects. He’ll do the same to third base, and then to home…swinging the back of his chair across home plate as if he were sliding in with the winning run. It’s beautiful to behold…and needed perspective for me to keep pushing on with Duchenne.

The welcome and renewed perspective doesn’t end there!

As one of the roving camp instructors, I chat with kids with disabilities ranging from autism to cerebral palsy to the ever-familiar Duchenne, as we prepare them to run to the next base. They, in turn, give slaps of five or ten or whatever they want, display proud grins of accomplishment and success, and express their simple joy for doing what many of us take for granted. I smile with admiration as campers’ youthful Buddies push wheelchairs and lead determined walkers around the bases by hand, while encouraging every athletic effort as true friends do. I nod with understanding as parents cheer their kids to do their best, and later express gratitude for the welcome change from daily caregiving. During breaks, we speak with parents who tell us how their kids look forward to the Fantasy Camp all year long, as its one of the highlights of their year. We listen as some tearfully share how their sons or daughters sleep wearing a Reds uniform in the days leading up to camp because they are so excited.

As you can guess, the Fantasy Camp is a brief escape from life with disability, but one that is SO recharging to the soul, kids and parents alike. It gives Alex a chance to get out bed and out of the house. It changes his perspective from the four walls of his bedroom to the four corners of the infield. It provides him with conversation, laughter, and smiles he so desperately seeks. It pumps him with pride of connectivity, as it brings families, friends, and larger-than-life Major Leaguers standing by his side and cheering his effort. It helps him to live a life of his dreams, as well he should.

Likewise, the Fantasy Camp helps me to understand the big picture of life with Duchenne. It helps me to understand that although the disease is horrible, terrible, relentless, unforgiving, menacing, teasing, threatening, discouraging, exhausting….[insert adjective here]…it’s life. It’s our life. As difficult as it is sometimes, it could be worse. As unfair as it feels, it could be less fair. As isolating as it seems, we are not alone. Baseball Fantasy Camp for Kids helps us to understand that life is a matter of perspective. It may not be the life we expected, but it’s the one we have. So, we had better live it to the fullest, like the campers do every year!

At the end of the day, as we loaded into the van, Alex summarized his approach to hitting, which offers valuable life perspective.

“Hey, Bud! You did really well today!” I told him.

“Thanks,” Alex replied. “It was fun.”

“And those hits…way to go!”

Alex nodded proudly, and then added like a true Major Leaguer…

“I just look for a pitch to hit.”

As we all should.

Alex laughing it up with Cincinnati Reds Owner Bob Castellini in 2015

For more information about Baseball Fantasy Camp for Kids
please visit http://www.baseballfantasycampforkids.com/

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"...A HAPPY KID"

5/12/2017

6 Comments

“Hey, Bud. I need to talk with you about someone we’ll meet today.”

So began a conversation yesterday as Alex and I drove along Interstate I-275 towards Cincinnati Children’s Hospital. The trip capped a stream of hospital visits over the past three weeks. The first included a now-quarterly pulmonary function test (PFT) and visit with Alex’s Pulmonologist. The second included a EEG brain scan to understand his infrequent dizziness and fainting. The third included our now routine Duchenne testing (MRI, EKG, blood work, and x-rays) and follow-up clinic visits with doctors from Neurology, Cardiology, Pulmonary, Endocrinology, Physical Therapy, Rehabilitation, Nutrition, and Social Work. The last visit also included for the first time ever…Palliative Care.

Thankfully, Alex LOVES Children’s Hospital! He loves it not so much for his testing, which can be invasive, long, and sometimes painful (note: his blood draws are notorious for hidden and collapsing veins, which are all too common with Duchenne boys). Alex loves Children’s for the people, even the ones drawing his blood (who he always thanks). He loves the visits for old friends like Herb in lab testing registration or Kenny-Benny in the Duchenne (Cardiac) clinic registration (we call him Kenny-Benny because for years we thought his name was Kenny, when it was actually Benny. Fortunately, Kenny-Benny enjoys the unique name and laughs with us every time). Alex also enjoys visits with nurses, technicians, cafeteria workers, cashiers, janitors, front desk personnel, security guards, and the like. He has come to know many on sight alone. He enjoys meeting new Children’s employees like the friendly technicians and fellows in the EEG testing lab, the Chick-fil-A cow mascot making a special visit yesterday, and anyone riding the elevator with us…to name a few.

Seriously, to name a few. If Alex had more time, he would visit every person on every floor, and then find time to work the parking garage. It’s amazing to watch.

We crossed the Ohio River and headed into Kentucky, towards I-471.

“Who's that?” Alex asked, his curiosity peeked by my revelation of someone new. But this time, he picked up on the emotion we were meeting someone serious. He wondered why I would make a big deal about meeting someone. Don’t they just grow on trees? He knows we have always let him meet people wherever we go. Why prepare him for someone new?

“Well, I’m not sure who it will be specifically. But, today we will be meeting with someone from Palliative Care.”

“Palliative Care? What’s that?” He asked innocently.

The words were understandably foreign to Alex, and to me admittedly when it came to Duchenne. Palliative Care was something in the far future…right? Palliative Care helped patients only in the late stages, correct? However, I knew we had turned a corner and crossed yet another bridge when during our recent visit with Pulmonary the doctor said she was seriously concerned, and wanted to introduce Palliative Care to the team management for Alex. That didn’t sound good.

“Yes. The Duchenne Clinic wants everyone over the age of 18 to begin speaking with Palliative Care,” I generalized, though honestly. For days, I had wondered how to introduce the subject. Alex turning 18 recently seemed the perfect explanation at this stage.

You see, we knew we must prepare him somehow. We knew having Palliative Care walk into our clinic room unannounced would be an odd and difficult pill for Alex to swallow. Best to prepare him beforehand, right? When we were driving to Children’s the morning of his appointments, the timing felt right.

“What do they want to talk about?”

I sighed, feigned distraction from cars driving around us on I-275, and then reached deep within to answer him honestly. Here goes.

“Palliative Care helps older Duchenne boys with quality of life issues. They want to make sure you are living as comfortably as possible and know what you want when things get tough.”

“Comfortable as possible? Know what I want? When things get tough? What do you mean?”

Oh Lord.

As I considered my response, spinning through my head was the prior conversation with Alex’s Pulmonologist about Alex’s declining lung strength since 2009. Over the 8-year span, his pulmonary function has declined LINEARLLY every visit to its meager function today. The trend was not good, and nothing to date helped change its direction. Unless corrected, the trend pointed to trouble ahead. This had not been the first time pulmonary voiced concern. But, it was the first time they have sought Palliative Care to assist.

As I drove through Kentucky and towards the Ohio River, I saw the downward-trending graph in my head. I considered whether to share the words the Palliative Care team uses in their Conversation Starter Kit hand-out. Words like wishes or preferences or worst of all…end-of-life.

Inhale. Exhale. Not now.

Traffic flowed steadily as we crossed over the Ohio River, towards Children’s Hospital, and to our last day of appointments. While driving, I felt the surrealism of Duchenne. I wanted to scream No, we can’t be THERE yet! I wanted to yell this cannot be happening NOW. I wanted to curse Duchenne, repeatedly, and then some more. Instead, I collected my strength, breathed deep, and stay focused on the road ahead.

“Well, at your age, some young men with Duchenne can really have a tough time. They can struggle to understand what’s happening to them. They can worry about their future.”

“What are you saying?” The concern raised in Alex’s voice. I clearly was not explaining as I had hoped.

“I’m saying that, as you know, Duchenne is a hard disease. For some kids, it can get really tough, Some may be overwhelmed with it all…”

Alex abruptly declares his state of mind, of which we are eternally grateful for his resiliency and positive outlook on life.

“Well, that’s not me!” He smiled when I glanced back with relief.

This is truth, and I cannot help join in his smile. His perspective of life…his Duchenne life, in particular…is absolutely beautiful (and the reason I started blogging his journey). Alex sees himself as no different from anyone else, only that he sits down more than others. Despite his physical weakness, he sees himself as an example of happiness and a spreader of cheer. He sees himself as someone who can pick others up just by talking, smiling, and helping them to smile along with him. He shares an interest with everyone he speaks, and with everyone he meets.

Literally.

If you have met Alex, you know what I mean.

But still, the Palliative Care team is not just a formality. They serve a purpose. An important purpose. So much so, Alex’s Pulmonologist wants them on the team, and we agree. I think, subconsciously, Alex understands this, but not fully. He feels his breathing difficulties. He hears the doctors voice their concern. He saw the doctor’s reaction when he asked her the following direct question.

“So, does this mean I am going to die at age twenty?”

Note, this has been a common question Alex has asked over the years, but it was the first time he asked a doctor directly. He held strong as he watched her sigh and pause before responding.

The doctors know his future. They know the challenges he faces. They have seen it before. Sometimes they are blunt. Sometimes they are not. The other day, they were less than either for clear reason. But, the Pulmonologist’s knowing glance to me told me what she truly believed. As a parent, you do everything you can to stay strong for your son. You project strength so he can, too. You project understanding, so he can with time. You project love at every turn.

On the pulmonary front, doctors have prescribed a new and improved ventilator for home use, and a portable ventilator (sip ventilation) to attach to his wheelchair for when we venture outside the home. This morning, Children’s Hospital Home Care spent two hours in our home demonstrating and training us on its usage.

On the cardio front, doctors have expressed concern with new scarring on Alex’s heart. This is the first concern ever shared from Cardiology. Although small, the scarring reminds us the heart is a muscle, too, and that Duchenne could care less of the havoc it creates throughout his body.

For these reasons, Palliative Care is welcome on our team. Things are getting real.

But, for now, our utmost and ultimate goal is to keep Alex’s spirits as high as possible. We must help him to keep the smile on his face. We will do everything and whatever we can to maintain this kid’s joy for life. Those who know Alex will understand what we mean.

We continued driving north on Burnett Avenue, and then pulled into the underground parking garage at Children’s Hospital. I dreaded the visit, and wondered if Alex felt the same way. As he rolled out of the minivan, however, all he talked about was seeing Kenny-Benny. I considered broaching Palliative Care again, but saw no reason. Alex knew how to handle adversity. He knew what he wanted. He wanted time to talk with one of his best friends at Children’s Hospital.

Later, I pulled Alex away from Kenny-Benny and guided him to our clinic room where we spent the better part of the day waiting and talking with the endless stream of nurses, technicians, and doctors. It was a familiar day, one we have enjoyed for nearly 15 years now. For years, Duchenne was a distant monster coming closer. For years, life moved along as best hoped. Only now, do the visits seem real…and vital.

“So, Alex, tell us about what you like to do,” Dr. Widener of the Palliative Care team began. “What makes you happy?”

Classic kid shoulder shrug, followed by awkward silence and searching eyes. Alex, then relaxes and fills the void as only he can.

“I don’t know. People, I guess. I really enjoy meeting and talking with people.”

Smiles all around. A difficult subject appears easier to discuss.

“That’s a wonderful trait to have,” Dr. Widener responded with sincere admiration.

And, so began our meeting with Palliative Care. It was introductory of sorts, thank goodness. I’m not sure we’re ready for the hard topics just yet, the ones to come. But, I could feel Dr. Widener delicately searching for clues on how Alex approaches life. I could sense his gentle handling of very personal worries and concerns. I nodded in thanks for his professionalism and Alex’s incredible attitude. This was Alex’s time to speak, and my time to listen.

“I’m a happy kid.” Alex expressed.

“Yes, we clearly see that. We want you to keep smiling, keep talking, and keep doing what you do.”

Kristy and I couldn’t agree more.

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THE LIGHTSABER

4/21/2017

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Sometimes, the simplest of dreams light the way. They carry us when times are tough. They stay with us when all seems lost. They live and thrive in our minds, colorful and true. They’re ours and ours alone to nurture and grow. They keep us moving forward, sometimes for years on end. They captivate, encourage, and support us when we need it most. And, when the opportunity to realize a dream arrives…you seize it, while you can.

The opportunity for Alex to realize one of his dreams came last week when the 2017 Star Wars Celebration returned to Orlando, Florida after a five-year hiatus. The date had been marked on Alex’s calendar from the moment it was announced over a year ago. He counted down the days until our road trip began. He ordered his costume. We bought him a blue lightsaber.

You see, Alex not only loves Star Wars. He LIVES Star Wars! He knows every character from every scene from every episode. He practically knows every line from any scene. He plays every Star Wars video game. He has watched every season and every episode of Star Wars – Clone Wars and Star Wars - Rebels. He reads Star Wars encyclopedias, books, and comics. He collects Star Wars Lego characters. He watches YouTube videos of the Jedi Council and other Star Wars enthusiasts…repeatedly and then some more. He keeps a Darth Vader journal.

It’s truly magical to see his love for Star Wars, and something to behold when you consider his life with Duchenne Muscular Dystrophy. A disease that steals so much from him cannot take away his love for Star Wars. So, we made it a priority that Alex would be in Orlando this year because nothing, not even Duchenne, would stop him from attending. Even the return of his pesky chest congestion and mucus-filled cough was no match for his determination to drive nearly 2,000 miles for four days of Star Wars and nothing but Star Wars.

The morning of its arrival was something special. Alex awoke with a smile on his face and urgency in his voice. We dressed him in layers of fabric, sashes, and belts per his Star Wars specifications so he could arrive as Obi Won Kenobi. He carried the blue plastic lightsaber across his chest as his powerchair bounced along the sidewalk. His wheelchair slowly parted the sea of Star Wars fanatics moving towards the entrance (note: more than 70,000 fans attended the four-day event).

Inside, the 2017 Celebration year did not disappoint. The crowd was amazing and an abundance of lightsabers waved at every opportunity. Kathleen Kennedy, the president of Lucas Films, kicked off the four days by introducing George Lucas, the creator of Star Wars, who explained his passion for bringing Star Wars to life. Warwick Davis (Wicket, the Ewok) hosted the event as Mark Hamill (Luke Skywalker), Harrison Ford (Han Solo), Anthony Daniels (C3PO), Peter Mayhew (Chewbacca), Ian McDiarmid (Emperor Palpatine) Hayden Christensen (Anakin Skywalker), Daisy Ridley (Rey), and John Boyega (Finn) appeared live to talk Star Wars. Samuel Jackson (Mace Windu) and Liam Neeson (Qui-Gon Jinn) joined via satellite. Carrie Fisher’s daughter gave a moving tribute to her late mother. The great composer and conductor, John Williams, led his incredible orchestra through several Star Wars pieces including the familiar introductory theme.

DUN DUN DUN DUNNNNNNNNNNNN DUN

DUN DUN DUN DUNNNNNNN DUN

(admit it, you just hummed along)

During the Celebration, we watched in awe as Rian Johnson (Director of the upcoming Star Wars movie, The Last Jedi) introduced a clip, and Dave Filoni (Director of Star Wars - Clone Wars and Star Wars Rebels) premiered an entire episode of Rebels Season Four. Over the four days, we enjoyed panels from Mark Hamill, Anthony Daniels, Ray Park (Darth Maul), Ian McDiarmid, Warwick Davis, and Billy D. Williams (Lando Callrissian). We admired the attention to detail from fully-adorned fans parading across stage in the Star Wars Cosplay Competition.

The force was with us.

Yet, the Celebration exhausted Alex, as the daily grind of Duchenne took its toll. Each day, he endured nearly 15 hours sitting in his power wheelchair, fighting through oblivious crowds, and being repositioned often for comfort. Even in our accessible hotel room, Duchenne reared its annoying head as our Hoyer Lift could not be positioned with its legs under the bed. This forced us to place the lift at a corner, lower him with his feet on a chair, and then pull him up to the pillows. We performed these acrobatics every morning and night. When we brought the issue up to the hotel management, they looked at us like we were from a galaxy far far away.

Sigh. Another day with Duchenne. Just deal with it as it comes.

Moreover, Duchenne’s reach extended farther and in a manner not entirely fair. This year, the Celebration set up a wristband policy to attend the highly-sought panel discussions with limited seating. As you can expect, thousands of fans camped overnight in line waiting for a wristband. They brought pillows, sleeping bags, and ordered pizzas. They got little sleep, and Star Wars celebrities did their best to entertain the fans and keep them going through the night.

Because of Duchenne, Alex could not camp overnight and, similarly, I could not leave him alone sleeping in the hotel. So, every day, all wristbands already had been distributed by the time we arrived in the morning. We were forced to wait, patiently, on standby every day to see a panel. It’s a difficult concept to explain while thousands of excited fans stream inside.

“It’s not fair, Dad! Don’t they know I’m a fan, too!”

When we raised the issue with the Celebration staff, they simply shrugged and said Sorry, that’s policy. Over time, however, the staff came to know us and understand our situation. They would then quietly usher us inside to the back of the assembly. Not the greatest of seats, but we took them. Fortunately, we never missed a panel we wanted to see.

While waiting, I could not help but consider the differences of Duchenne since our last Celebration in 2012. The changes were significant. As a then 13-year old with Duchenne, Alex traveled in our minivan’s front seat, head high and proud. His wheelchair waited in the back, secured and empty until needed whenever we stopped for food, hotels, or simply to stretch. He flipped through Star Wars magazines and his character encyclopedia while I drove. I handed him a snack or drink whenever he wanted as we drove on down the highway listening to his teenage tunes. In hotels, I piggybacked him onto the bed, couch, and toilet. Alex could sit up to get dressed. At restaurants, he could hold a drink and feed himself.

Not so much anymore.

Today, as an 18-year old with Duchenne, Alex remained in his wheelchair throughout the entire 2,000-mile round trip, which his sore back just loved. He slumped frequently from the bounce of the road and we stopped often just to lift him back.

Because of Duchenne…

…He could not hold a book or read while riding in the minivan.
…He could not scratch his head or blow his nose (that darn cold), causing me to reach back while driving to help him perform these simple tasks.
…He could not hold a drink, causing me to reach back while driving to assist (with a straw).
…His cell phone frequently fell from his hands because he could not keep a grip (note: we drove many miles listening to his music as it continued to play from the minivan floor).
…His head pillow frequently fell while he slept due to the bounce of the road.
…He required help with every bite at every meal, every day and night.
…We needed a Hoyer Lift to transfer him into bed.
…He laid flat on the bed to get dressed.
…He could not use the hotel restroom.
…He used his cough assist to help clear his mucus-filled lungs after long days.
…He used his Bi-PAP every night so he could breathe and get a good night’s sleep.

I thought about future Celebrations in Orlando…

But, thankfully, Duchenne did not stop Alex from enjoying himself this year!

Per his usual, Alex talked with everyone he could find. We met fans from across the United States and all over the world (Singapore, Thailand, Peru, Germany, England, Brazil, Japan, Canada, and Mexico). Alex chatted with security personnel, police patrols, canine patrols, crowd control managers, maintenance staff, concessions workers, registration workers, ticket takers, wristband checkers, production operators, stage hands, and cameramen. Alex sought out costumed fans for pictures and, likewise, they took pictures of him in costume. He befriended the Celebration warm-up host, Mark Daniels, (who later ushered us into prime panel seating at a later panel). Alex was the fortunate subject of a selfie taken by Warwick Davis. In a crowd, Alex recognized and confidently approached Pablo Hidalgo, the Creative Executive for Lucas Films.

Who recognizes Creative Executives??

THAT should tell you the level of Alex’s fandom!

Yet, for me, the most touching part of the Celebration was Alex’s lightsaber. We had bought it at Target a couple weeks before we left. It’s simple, plastic, and blue, the kind that telescopes out when you use it. When you push a button, it pulsates a lovely groaning sound and lights up. Although awkward for him to hold, he carried and rested it across his chest every day. Though unlike many of the elaborate lightsabers we saw at the convention, Alex’s blue lightsaber meant the world to him and now me.

When I asked him why he carried it every day, his answer struck me deep and had me appreciating his determination to not let Duchenne hold him down nor keep him from realizing his dream. We should all take note.

“Because I can’t clap,” he answered with conviction. “I move the light saber so everyone knows I am having fun.”

Here was a kid who could not move his arms and barely wiggle his wrists, yet used the lightsaber to express himself. Here was a kid dressed as Obi Won Kenobi, determined to enjoy the day….and let others know it.

On the first day, during the Star Wars 40th Anniversary panel where the endless stream of stars came marching on stage and where John Williams conducted his orchestra, my heart filled with pride that Alex could experience his dream. I looked over to him and saw his eyes closed and head tilted back. I worried the long drive, crowds, and wheelchair-sitting wore on him. I worried that his chest congestion and breathing difficulties were taking a toll. I worried that fatigue and physical exhaustion had set. I feared the return of his dizziness.

“Hey, are you doing okay?” I asked with concern.

Alex opened his eyes and turned his head towards me. He wiggled his light saber and smiled with relaxed content.

“I’m just really happy.”

May the force be with you!

3 Comments

CHEESE CONEYS AND A FRIEND

3/21/2017

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I am SO tired of this disease.

I just want it to go away.

These aren’t my words, though they could be. These words are Alex’s. They’re raw, honest, and from the heart. They also spilled into my side late last Saturday night while I cradled Alex's head outside the Eastgate Skyline restaurant. His good friend, Zach, stood by his side in support.

The night before, the young men kicked off a weekend of video games, movies, hoots, and hollers. While Kristy and I enjoyed our traditional Friday Night Pizza and Beer, the boys' gaming voices echoed throughout the house. It's a beautiful sound when you think about it - two young men enjoying a lasting friendship in the midst of Duchenne. The support that ensues is immeasurable and beautiful.

By 10pm, the adults faded away and the boys continued onward. I sleepily responded to several calls throughout the night for more pizza, snacks, and waters. Around 6am the next morning, the boys called it a night while Kristy poured the first cup of coffee. Not surprisingly, Alex and Zach slept most of Saturday.

On their waking early in the evening, they ate lunch and prepared themselves for another late-night adventure. Our first stop would be Kong: Skull Island, at the Milford Cinemark Theaters. We hoisted Alex out of bed and into his wheelchair, secured him in the van, and drove into the cold night. Jokes, music, teasing, odors - all Dude Trip necessities we have perfected over the years – filled the van. The theater was packed, the movie was good, and afterwards, our bellies growled for food.

We settled on Skyline, one of our favorite staples. After parking remotely (because the ONE van accessible handicapped space was taken…don’t get me started), we made our way across the parking lot and into the restaurant. For those who haven’t been to the Eastgate Skyline, the glass door entrance is a bit of a zig-zag for wheelchairs because the outside door is on the left and the inside door is then on the right. In the space between, Skyline unnecessarily adds a gumball machine, a wire rack of magazines advertising apartments for rent, and a wooden rack advertising jobs and cars for sale. All glaring obstacles to novice drivers, but Alex expertly navigates the course every time. I don’t know how he does it! Though I would soon gain an appreciation.

Inside, we found our favorite spot. Our server placed crackers, napkins, and forks on the table and memorized our menu-less orders (anyone who knows Skyline, knows that menus are taboo). Cheese coneys with mustard and onion for each of us, three-ways for both Zach and I, and spaghetti with cheese only for Alex (the chili makes things a bit messy for him). After a sprinkling of hot sauce, we talked about school, NCAA hoops, and girls. The boys nodded their cool-headed hellos to other high schoolers sitting nearby.

Life was good.

Because Alex can no longer lift his arms, I help him eat. At Skyline, I spun spaghetti on his fork, placed the fork in his hand, and then raised his arm to his mouth so he can feed himself. All went as planned, until midway through the meal when Alex asked to be sat back in his wheelchair because he was uncomfortable. This is not uncommon and typical for him as his spinal compression fractures often bring discomfort while sitting for long periods of time (remember we had been at the movies).

“Ugh! My stupid back!” he announced, signaling a familiar tune.

“No problem,” I told him (note: we’ve done this thousands of times before…literally). “Just roll away from the table and I’ll lift you back.”

He did. I did. And after multiple re-positions for comfort, Alex returned alongside the table to continue eating. Before long, his back bothered him again, so we repeated the effort. Later, when we finished our meal and leaned back in fullness, Alex asked to be sat back a third time. Again, not uncommon. But, afterwards, Alex still fidgeted and leaned his chair back and forth to find relief. It was clearly apparent Alex was uncomfortable and needed to get home. We left our table.

That’s when our night changed...dramatically, and the relentless, unforgiving nature of Duchenne crashed our party yet again.

While backing away from the table, Alex said he was feeling a little dizzy. I told Alex to follow Zach outside for some fresh air while I paid our bill at the checkout counter. I reached for my wallet and nodded pleasantries to the cashier. I considered Peppermint Patties for the boys.

That’s when I heard the crash. Heck, the whole restaurant heard the crash!

I looked to my left and saw the back of Alex’s chair banging into the glass door as he struggled to drive through the zigzag entryway. At first, I thought Alex just had trouble maneuvering through the obstacle course. But, that was unlike him. Usually, he can turn his chair on a dime. I then noticed Zach desperately trying to hold open the interior door with his fingertips, at the same time dancing on his toes to avoid being run over. That’s when I noticed Alex’s head bobbing uncontrollably as his chair reversed and slammed again with abandon.

Something wasn’t right.

I immediately ran to Alex’s aid, thinking he was stuck, only to find his eyes rolling back in his head and his arm falling away from his wheelchair joystick.

He slumped…UNCONSCIOUS!

I’m telling you, that scared the hell out of me! Alex has been dizzy before, but it was ALWAYS controllable. He NEVER passed out! We had discussed the issue before with his doctors and they told us he could be experiencing hypoglycemia or rapid drops in blood pressure, which would cause the dizziness. They said the episodes may be related to pre-diabetes, heart issues, neurological issues, or simply dehydration. They tell us he is at risk for these health concerns because of his Duchenne and related obesity and immobility. They tell us to watch for when the episodes happen, take note, and do our best to calm Alex when they do. His dizziness is typically brief and quickly relieved through hydration, fresh air, and steady breathing. All well and good when Alex is responsive. But when he’s not…

I quickly told Zach to hold the outside door as I grabbed the joystick and maneuvered Alex through the glass maze. I was determined to get Alex outside immediately (I am sure the Skyline manager thought we were ditching the bill). Though somewhat skilled in steering Alex’s wheelchair, I slammed it into the wire and wooden advertisement racks, sending the racks sprawling to the ground and the magazines flying everywhere. Thankfully, I avoided the gumball machine. During the frenzy, I also managed to slam Alex’s hanging arm into the exit door jam. I was desperate.

We made it outside where I cradled Alex’s head, held his hand, and urged him to breathe. Zach stood by in silence as he was clearly shaken. He saw Alex’s purple lips and pale skin. He saw Alex slumped and still. He was concerned, as was I. During that moment, I clearly remember thinking worst case thoughts and not now, not now! Not that there EVER is a good time, but Alex has a life to live! All kids do! I know some of you may think it was only fainting. But, when your son is limp and unconscious in your arms, it’s a frightening experience…and a cruel reminder of this horrible disease.

About ten seconds later, Alex thankfully regained consciousness. As a parent, the feeling of relief was incredible and I hugged him close! As a friend, I am certain Zach felt the same way, as I remember him saying “Dude, you scared the crap out of me.” But, as a kid with Duchenne – the one shouldering the hardship - I could see that feelings of concern, worry, and fear gripped Alex hard.

“Dad, what happened? How did I get out here?” His first words shared as we waited for him to recover.

“You passed out, Bud. We got you outside as quickly as possible.” I nodded towards the magazines scattered about the floor.

“Whaaaat?" he said woozily. "I don’t even remember coming out here. The last thing I remember was not being able to see. Everything was dark. I couldn’t find the door!”

Zach stood by shivering in the cold. “Dude, you about ran me over!”

“Really?” He said with concern. “Sorry.”

“No need to apologize,” We told him. “Just keep breathing deep. Everything will be alright.”

I looked up and saw a Skyline worker cleaning our mess. I apologized. He said don’t worry about it, then asked if we were okay. I told him we were fine, and that Alex just needed some fresh air. I assured the kind man I would be in soon to pay our bill. I then told Alex I need to go inside, and started to pull away from cradling his head. Alex clutched tightly.

“No, hold me, Dad! Don’t leave me.” I obliged without hesitation as any parent would.

“Hey, we’re never going to leave you, Bud!” Alex pushed his head deeper into my arms.

“Why did that happen?” he asked quietly while staring at the ground.

“I don’t know. Perhaps I didn’t give you enough water. Perhaps it was the pasta. Perhaps…”

“Am I dying? Will I make it home? I am not ready to die.”

Zach and I did our best to calm him. But, inside my head, I cursed Duchenne. Seriously. Cursed. It. I’ve said it before, and I’ll say it again. No kid should EVER think about dying. No kid should ever worry about death. I realize Duchenne has unique challenges and the odds are completely stacked against us. But, dammit, make it stop already!

“No, Bud. You are not dying. You have a whole life in front of you. You just fainted, but you’re doing much better now. You’ll be fine.”

“Yeah, you’ll be fine, Alex,” Zach added with growing confidence that everything was okay.

Alex calmed down and breathed deep. His skin color returned to normal. He began to feel like himself again. He also connected the dots. He knew his fainting was likely related to Duchenne. He calmly and deliberately shared his heart. You could practically feel his emotional pain.

“Dad, I am SO tired of this disease. I just want it to go away. I just want it to be over.”

“I know, Bud. I know. Me, too.”

What more can you say?

Alex’s doctors always put on a happy face and spin to the positive. They always do their best to keep spirits up. They must, understandably. But, if you look close, you can see what they see. It’s not pretty. Those in the advanced years of Duchenne will offer support. But they, too, know the road ahead only gets rockier. They experience it every day. Although therapies and wisdoms prepare you for hardships to come, NOTHING prepares you for the hardships that do. Having been through a few of them, all I can say is those moments are best handled through your heart and with a deep sigh. With Duchenne, you take each day as it comes, however blunt, and do your best to keep moving forward. You learn to support one another and carry on with love in your heart because, in the end, that’s all that matters.

You can also find the good in all this. Because, even during Duchenne’s darker moments, life’s beauty rises visible and strengthening, if only for a short while. It’s these moments that keep me going along our journey. And last Saturday night, after this frightening episode, I witnessed perhaps one of the most tender scenes in Duchenne I have ever known. It went like this.

When I finally convinced Alex we really did need to pay our bill, he reluctantly lifted away from my side and let go of my hand. Alex then opened his hand towards his best friend.

“I know it’s probably weird, but will you hold my hand?” he asked. There, in the cold night on the Skyline front sidewalk, Zach reached down and gripped Alex’s hand without hesitation.

"You bet," Zach replied.

“Thanks,” Alex said from his heart. Zach simply nodded as good friends do.

I marveled at the scene, choked back some tears, and then walked inside smiling.

As I paid our bill at the cashier, I looked through the window to check on the young men. Zach stood by his friend as Alex leaned close. I appreciated the support. But, when Zach placed his other hand around Alex’s shoulder, well...it filled my heart.

This journey with Duchenne is and will be difficult. The road is and will be rocky. But, with support from friends like Zach, it’s bearable...

…and beautiful. when you need it most.

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THE AMAZING POWER OF SOUP AND BOOKS

2/23/2017

6 Comments

You should have seen him! The poor shelf-stocker didn’t see it coming and didn’t know what hit him. As I watched from a distance, feigning interest in cookbooks and bird-watching guides, the naive employee from Half Price Books just nodded and smiled and replied Oh, really! over and over and over again. I snickered with knowing when the young man would ask a question of his own, hoping to redirect the conversation. It didn’t work, and only expanded the conversation. He was obviously new.

It was a sight to see, let alone hear. Alex peppered the shelf-stocker with questions and comments about movies and television series, especially Star Wars and Family Guy, while the young man strolled through the store and placed books on the shelves. As the employee pushed the cart from aisle to aisle and stocked used arrivals, Alex followed alongside and talked. And talked. And talked. At times, his voice and excitement carried throughout the bookstore, overtaking the pleasant Muzak piped in overhead. I swear it seemed they turned up the volume a little to mask his talking.

But who can blame him for seeking new conversation? Who can blame him for clinging to connection?

The kid was desperate for a change.

On top of his fighting a cold for now entering its 20th week (thankfully in the waning stages), he had been stuck at home for over the past two weeks while our accessible minivan underwent an endless stream of repairs. Without transportation, Alex couldn’t go anywhere other than our house or the neighborhood sidewalk. He couldn’t go to his favorite restaurants. We couldn’t go his favorite stores. He couldn’t go to the park or mall or zoo. He couldn’t visit his friend, Zach! Because of the van repairs, we even had to postpone a Children’s Hospital appointment, which he loves, thankfully, for the social engagement.

As anyone who knows Alex can certainly understand, being homebound is torture for him. Throw in Duchenne, and staying in bed gets real old, real fast.

It’s not that we didn’t get him out of his room. We did. We would hoist him out of bed and bring him downstairs so he could roll around the house. We would bundle him up and head outside for a stroll around the neighborhood. But, it’s just not the same for a social kid like Alex. Especially, someone who is dependent on others for nearly everything, most notably transportation.

Because Alex enjoys staying up nights and sleeping days, our ventures around the neighborhood sidewalks usually occur in evenings. Unfortunately, this is when most people this time of year are inside eating dinner, unwinding from the day, or doing homework. During an excursion last week around the neighborhood, we again found everyone inside or simply waving while they drove by. Our prospects of visiting were fading, when one neighbor suddenly came out to greet us. When he did, he found Alex desperate to talk about anything. Before long, cold temperatures pushed him back inside and us home. As the sun set, the winter forced us to wait for another day.

When the weather turned warmer later in the week, Alex awoke one day to voices in the neighboring driveway. His eyes flew open and he asked if he could head over for a visit. The 45-minute process of getting him dressed, out of bed, and outside was well worth the effort as Alex enjoyed driveway conversations there and elsewhere late into the night. Our neighbors kindly walked him home well past dark with a smile on his face and rosy cheeks. The visits helped his feeling of isolation, but as I hoisted Alex back into bed that night, Alex I could see needed more.

He did because, during the two-week-plus repair, Alex had worked the phones often to find friends to come over for a visit. But, unfortunately, he struck out with every call for one reason or another. It seemed everyone he called had something going on with school, sports, work, homework, girlfriends, or family time. Alex understood, but sighed his disappointment in spending another night with Mom and Dad sitting in his room. Not that he doesn’t enjoy our company. We’re a barrel of fun! But, as Alex puts it…“No offense, Mom and Dad, but I see you guys every day!”

No worries, Bud. We get it.

So, when Mobility Works called to say our van was ready, Alex could hardly contain himself. Finally, he could go somewhere! Finally, he could get out of the house and do his thing! Finally, he had control! We quickly worked out a plan that while Alex’s Home Instruction teacher came to the house, our good neighbor, Don, would give me a ride to pick up the van. When I returned, I could see it on Alex’s face. He had watched enough television. He had watched enough YouTube. He had played enough video games. He had enough schooling. He needed out. Desperately! He was bursting at the seams to socialize. I hoisted him into his wheelchair, secured him in the repaired minivan, and off we went.

So, where do you go after being homebound for two weeks?

Well, of course,…Zoup!

Alex loves this restaurant. It’s a pleasant environment, the food is outstanding, and the staff is always friendly and accommodating. It’s not surprising he selected this destination for his first stop. Fortunately, nobody was in line. Alex had free reign to do his thing. I asked for soup sample after soup sample knowing full well he only wanted to chat and hang out. As we watched them pour samples and prepare our soup and sandwich selections, Alex was in heaven talking with the workers. I smiled for his happiness, filled our drinks, and then found a table. Alex continued chatting. I literally had to push Alex away from the counter so we could eat. As I helped Alex enjoy sourdough bread dipped in his tomato basil soup, he would talk across the store to the soup staff.

“The tomato basil soup is really good today!” he shouted.

He accepted another bite, and then enthusiastically asked for more. I wiped soup from the corners of his mouth, before dipping another piece and placing it in his mouth.

“When’s the French onion soup coming in?” he inquired while chewing. “I looovvve French onion soup!”

And so it continued between nearly every bite.

Later, as I dumped our trash in the garbage bin, Alex zipped back to the counter to talk some more and pinpoint exactly when the French onion soup would be served. I just watched, smiled, and was thankful for his newfound freedom from his bedroom. Never in my life had I known that soup had such an impact on a kid. After about an hour in Zoup, we headed to his next requested stop.

Half Price Books!

There, I chuckled as the young shelf-stocker greeted Alex and asked how he’s doing.

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IN DUCHENNE

2/3/2017

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It’s interesting how time can extract true thought. I say this because, given space, we often think too much. At least I do. With ample time, we imagine wisdom, eloquence, and persuasion. We share experiences, stories, or casual exaggerations. We consider many angles and contingencies as if we knew what to expect all along. We prepare against our weaknesses and fortify our strengths, all in hopes of saying the right thing at the right time.

Then, there are times when we have seconds to think and fewer to speak. Sometimes we hit the mark, other times we miss. Either way, our audience expects something, anything because they value our perspective. They know we have experience in what they face, and hope for guidance along their journey. In these times, words often emerge quickly, unfiltered, but from the heart. They can even surprise, causing us to smile in self-awareness, as if to say where did THAT come from?

For me, such words emerged the other day faster than I could think.

Alex and I waited in the blood testing lab at Children’s Hospital in Cincinnati. Our visit was off-schedule, atypical of the standard six-month interval we now experience with Duchenne. Our visit did not include Dexa scans, MRIs, EKGs, or the like. We were not there to see Neurologists, Cardiologists, or Endocrinologists, as we typically do. We came to Children’s to figure out how to end Alex’s congested misery, which had entered its 17th consecutive week.

As anyone knows, colds are downright annoying. The drainage, the stuffiness, the cough, the tissues. Ugh. All of it…miserable. For Alex, after rounds of antibiotics, over-the-counter drugs, restless nights, and cough assistance, the stubborn cold still would not go away. Although colds and Duchenne are familiar friends, we wanted to somehow end the relationship and bring Alex his needed relief. So, we met with Alex’s pulmonologist, Dr. Sawnani, took x-rays of his lungs to eliminate concern of pneumonia, and had him repeat a previously failed pulmonary function testing. All in a day’s work for Duchenne families.

The surprisingly long day ended with yet another Duchenne blood draw. I signed us in to hospital testing lab, found a seat, and scrolled the latest news on my cell phone. Alex, per his usual, approached anyone and everyone he could find and wiggled his hand in greeting to those who would notice. The waiting area was full of children and families of all ages and from all walks of life. Clearly, it would be a long wait.

Before long, Alex met a young couple and their son, who appeared to be about two years old. I watched and nodded a seated greeting, but let Alex do his thing. From a distance, I could see smiles and hear laughter as Alex quickly made new friends. When the young family was called into the lab, they picked up their son, thanked Alex for his kindness, and smiled politely to me as if to say you have a very kind son. I smiled and nodded my thanks in return, and then resumed watching the news and waiting our turn with needles. Alex looked for another family to meet.

Before long, the young family exited the lab and approached us again before they left. As they put on their coats, we talked in generalities, but something about their eyes told me we had much in common. They asked if we had seen Dr. Wong today, as they had, when it hit me.

THEY were a Duchenne family just like us. WE certainly had much common. With their son at age two, their journey had just begun.

How could I have been so rude?

I quickly explained how much we loved Dr. Wong and her cross-disciplinary team. I shared how Dr. Wong’s team has treated Alex like family for the past 15 years, and that I was certain this family’s trip to Cincinnati (from New Jersey) was well worth the effort. I assured them they were in good hands.

Then, I started thinking too much. I looked to their little boy, who rested in his father’s arms unaware of his future. I recognized his innocence, and remembered Alex’s. I saw the father’s love for his son, as well as the abundance of dreams he would gradually, and likely reluctantly, let go. In that short glance, I saw his strength for the present and his worry of the future. I saw that look because, as a Duchenne Dad, I’ve lived that look.

Similarly, I saw the mother’s love. In the brief connection, I saw her concern for the future and her determination to do everything under the sun to protect her child. I saw her pushing aside her dreams to help her son live the best life he could. I again saw that look.

We exchanged small talk and smiles of unspoken knowing.

The words spilled from my mouth.

“Duchenne is a journey...”

They emerged without thinking. It wasn’t something I had planned to say. I guess, intuitively, I wanted to prepare them somehow for the road ahead. Not that they needed my help, or they didn’t already know the obvious with Duchenne. More than likely they did. I guess my words were shared more to acknowledge an understanding for what they may be thinking. I wanted them to know they were not alone.

Then, I added…surprising myself…the following words that poured from my heart.

“…but, it’s a beautiful journey!”

I immediately thought...Did I just say that? I’ve thought it. I’ve written it. But, I’m not sure I have ever SAID it before. Let alone to strangers.

Regardless, the statement rings truth. I see this more and more every day. Where I once dreaded every fiber of Alex’s muscle loss, I find peace. Where I once feared my son’s future, as well as my own, I find understanding. Where I more than once lamented lost dreams, and admittedly still do, I find love….all of it in Duchenne.

As much as it sucks…totally sucks…more than anything sucks…the journey is beautiful!

I say this because nowhere else could I have imagined finding the beauty in things like…

…lifting my son’s arm to his mouth so he can “feed himself,”
…lifting his arm so he can rub crusty sleep from his eye,
…wiping milk from his lip or food from his face,
…washing and drying his hair,
…showering him and toweling him dry,
…peeling dead skin from his feet,
…applying lotion to his dry skin,
…clipping his toenails,
…cutting his hair,
…massaging his feet,
…massaging his muscles,
…cleaning his “backside,”
...helping him to "fill a bottle,"
…brushing his teeth,
…combing his hair,
…scratching his itches,
…dressing his limp body,
…putting a coat on him while he lays flat,
…pulling his constant wedgies,
…straightening his feet
…re-positioning his legs,
…sitting him back in his wheelchair, and even
…calming his concerns about life…and death.

Likewise, nowhere else could I have found beauty in things like…
…traveling to regional zoos, malls, and bookstores – all places where he is free to roam,
…talking with doctors, nurses, and administrators who treat Alex like family,
…witnessing his love for complete strangers,
…witnessing his respect for any person, in any job, in any place,
…holding his hand every night,
…listening to his laughter despite his struggles,
…seeing his smile despite his future.

I could go on. Those who read this blog understand what I say.

Minutes later, the young mother came hurrying back, somewhat winded but smiling and a little nervous. I thought she had forgotten something. She hadn’t. They felt it, too, and wanted to exchange numbers so we could stay connected along the journey. We parted as newfound friends, in Duchenne.

“They were a nice family,” Alex said as we watched her walk away.

“Yes, they were,” I agreed, disappointed in with myself for not meeting them sooner.

In that simple meeting of strangers, the goodness of Duchenne came shining through. Although the future threatens us with despair and the road ahead is and will be rocky, the present unveils a beautiful life. We need to remind ourselves of this whenever we can. All of us. Not just those in Duchenne.

I looked to Alex to share the feeling, but stopped and smiled instead.

There he was, living it...

...and working the room again.

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HAPPY JUNE!

BECAUSE OF KYLO

THE SILENT BATTLE

SITTING WITH GEORGE

THAT SPARKLE

THE INFUSION

THE HONGI

ONE POINT

WAITING, PANCAKES, AND BACK IN THE DAY

THE KEY

NEXT THURSDAY CAN WAIT

A TIMELY TEXT

THE LAST FIRST DAY

FIFTEEN YEARS IN

A PITCH TO HIT

"...A HAPPY KID"

THE LIGHTSABER

CHEESE CONEYS AND A FRIEND

THE AMAZING POWER OF SOUP AND BOOKS

IN DUCHENNE

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