david clickauthor

ONE POINT

7/20/2018

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!

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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.

6 Comments

THE LIGHTSABER

4/21/2017

3 Comments

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

5 Comments

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.

5 Comments

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.

6 Comments

IN DUCHENNE

2/3/2017

16 Comments

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.

16 Comments

ALL I WANT FOR CHRISTMAS

12/20/2016

8 Comments

One Christmas, I asked Santa for a motorcycle. Not a real motorcycle, but a toy one I could ride around the neighborhood. All I wanted was to zip around with my friends. I wanted to keep up with them and get to where I was going super-fast. I wanted to be included and involved in whatever the neighborhood kids were doing. At the time, it seemed a motorcycle would help. Without it, my friends would have moved on to something else by the time I got there. They seemed so much bigger, older, and faster, and I wanted to be just like them.

It wasn’t too much to ask, was it?

On one particular Christmas morning, I woke up early, raced into my sister’s room (she always seemed to sleep longer on Christmas morning for whatever reason), and shook her awake. My parents were already downstairs…they said something about preparing a turkey, but that seemed odd for such an exciting day. It seemed they were always scurrying about doing something or other, always saying for me to be patient. Looking back, I get it now. But, when I was little, not so much.

The wait tortured me. My sister took her sweet time. My parents busied themselves with things downstairs. My bladder applied its usual morning wake-up pressure. I rushed to the bathroom, and then later returned to rouse my sister, who thankfully was now awake.

When THE moment finally arrived, Mom and Dad walked into the room and asked if we were ready.

HECK YEAH, WE’RE READY! IT’S CHRISTMAS MORNING!

My sister and I could see the glow of lights down below and our excitement soared. At the top of the stairs, Mom and Dad arranged us by age, oldest to youngest. UGH! That meant Dad went first, Mom second, my sister third, and me…an always frustrating last.

COME ON! COME ON! COME ON!

For whatever reason, my sister seemed concerned with me rushing past her, so she held out an arm and controlled my pace. The descent was so slow that I just sat and scooted down on my butt. Looking back, I’m glad my sister was there to help, because I would have fallen from excitement otherwise.

Once safely down the stairs, the roadblock lifted. We raced to the Christmas tree to find what Santa had delivered. I knew I had been good, so I hoped for everything I wanted.

And there it was…

My motorcycle!

A three-wheeled green beauty equipped with racing decals and fancy handlebars! Santa heard me! I jumped and screamed in excitement, then hopped on the hard-plastic seat. I revved the engine and crouched low in imagination. I turned to my parents, smiled, and then climbed off the motorcycle and gave them big hugs. It was a wonderful day!

I then claimed a spot on the floor and found presents with my name. I ripped them open as fast as I could. My hands and arms seemed to move in a blur. The wrapping paper flew in the air all around me. Life was good. It was the Christmas I had always dreamed!

That was then.

Christmas mornings are different for me now.

Much different.

Today, my parents usually wake me because I didn’t get to bed until the odd hours of the morning. That’s become my standard lately, playing video games and watching YouTube videos late into the night. I enjoy it because I can’t do much else, it seems. It’s frustrating, but I do what I can.

Nowadays, on Christmas mornings, my parents whisper in my ear that Christmas is here. I usually yawn and smile in return. I would love to stretch, but even that’s difficult. If I had been sleeping on my side, I must wait to be turned because I cannot do it by myself anymore. Once on my back, I smile again and nasally say Merry Christmas, and then ask for a hug. I love hugs! My parents remove my Bi-PAP mask, bend down in turn, and wrap their arms around me, and I do my best to return the favor. Thankfully, I don’t have to reach far, just a couple inches, enough for my hands to curl around them. They then put some socks and slippers on my feet and ask if I’m ready.

Uhhh, yeah! I am more than ready! But, uhhhh…I gotta go.

That’s when my parents nod their understanding. Mom goes to wake up my sister. Dad helps me aim into a bottle while I lie in bed. Once I’m done, Dad shimmies a sling underneath me and position the straps. He then brings in a Hoyer lift and hooks me up. I patiently wait again while Dad gets my power wheelchair and maneuvers it into my room. He then cranks the Hoyer lift and up I go. Slowly. Too slowly. Agonizingly slow for a Christmas morning! You see, usually it takes about 35 cranks to lift me. But, on Christmas, Dad likes to tease me by cranking super slow.

Come on, Dad! It’s Christmas! Hurry already!

After I am lifted high, Dad then rolls me away from the bed and pivots the lift towards my waiting wheelchair. I’m totally at his mercy at that point, and he always jokes around. He’ll stop midway and far from my wheelchair, and ask if I’m excited. I’ll respond loudly that I am, and he’ll resume pushing me towards my chair. He’ll then stop again to say…

Don’t you just hate it when someone leaves you hanging…especially on Christmas morning!

NOT FUNNY, DAD!!! GET ME DOWNSTAIRS!!!

We’ll laugh, but he always seems to laugh more. He’s cruel like that, you know. But, in a good way, because I know he loves me.

He’ll then position the Hoyer lift above my chair and gently lower me down. He’ll remove the sling (which always makes me slouch) and then reposition me in the chair. That process takes forever and includes body lifts, body shifts, bunched-shirt fixing, wedgie fixing, pant leg fixing, shoe fixing, leg and feet positioning, and repeat until comfort. But, it’s oh-so worth it to be comfortable in my chair because of the stupid compression fractures in my stupid back. By now, my Mom and sister are waiting on me this time.

My how times have changed.

I love my wheelchair! Though it stinks I have to use it, my wheelchair gives me control of my movement and that’s a great feeling! I can go where I want. So, the first thing I do on Christmas morning is zip to the balcony. There, my sister and I look down and then back to each other in mutual excitement. Christmas has arrived!

Now, instead of descending the stairs, we ride a small elevator. It seems to take forever and I silently urge it to move faster! Once down, I follow my sister (something about an age thing again) and we move fast to the family room. I need to be careful not to run over the dogs and cat.

I’ll park my chair in my favorite spot and wait for the gift-giving to begin. Because I can no longer pick up presents, my parents bring them to me. I can barely point to which present I want first, so my parents will point to one until I nod for them to pick it up. They’ll bring it to me so I can inspect it and feel its weight on my lap. Then I’ll nod again for them to help open the present. I do this because even the wrapping paper is too hard for me to tear apart anymore. It stinks, but I just can’t do it. How I hate Duchenne.

Anyway, my gifts usually include video games or movies. That’s about as much as I can really enjoy these days. Occasionally, I’ll get a book. But, I can’t even hold those anymore, or turn the pages. So, games and movies it is. I don’t really mind. I LOVE video games and movies. You should see my expanding collection!

Sometimes, Santa gets me clothes. Uhh, boring! Sometimes iTunes cards, which I also love. My stocking usually has candy, gum, Star Wars cards, football and baseball cards, or movie theater gift cards. Sometimes Five Guys and DQ gift cards, too. My relatives usually send me gift cards to my favorite store…Target! I love that store because they treat me so nice.

And so, the morning goes…

No longer do I ask for motorcycles of footballs or baseball gloves. No longer must I have fancy high-top sneakers. Those gifts (and days) are distant memories. In fact, the green motorcycle is currently collecting dust in basement storage. My parents want to give it to Goodwill or something. But, I’m not so sure if I want to give it up already.

I’ve got other plans.

You see, what I really, REALLY want for Christmas is for my stupid body to work. It’s getting weaker every day and I don’t like it. Not at all. Especially my lungs. I know doctors are working hard and they are making advances, so I want to be ready when the day comes (hence, the reason I hang onto the motorcycle). As much as I love video games, movies, and gift cards, they seem to be missing the awesome mobility my legs, arms, and hands could provide. If only my body would do what I want it to do. Maybe someday.

So, here I sit by the tree. Waiting. Hoping.

As I get older, I guess I need to move beyond the Santa thing. It’s hard because I still kind of believe. I love to hold his hand. I love to tell him what’s on my Christmas list. I just know that he listens. He says that he does.

But, for now, I’m thankful for what I have. I have a family that loves me. I have friends that care about me and laugh with me. I have pets that lick my face and sleep with me. I have video games and movies. I have a green motorcycle in the basement just waiting for me.

But, Santa, YOU know what I really want. I told you.

All I want for Christmas….ANY Christmas…is a cure for Duchenne so my stupid body can work again like I know it can.

That’s not too much to ask, is it?

8 Comments

EIGHT WEEKS AND COUNTING

11/29/2016

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Eight weeks can seem like an eternity. It can also be over before you know it. No matter your perspective, eight weeks is the rough equivalent of sixty days and sixty nights. It’s two long months looming before you, or two quick months already distant in the rearview mirror. It equates to 1,500 hours or 90,000 minutes, give or take. Regardless, anyway you slice it, eight weeks is eight weeks. And, for boys with Duchenne, eight weeks can be downright exhausting no matter how it adds up.

For us, the fun began at an OSU football game in early October. Sitting high up in Ohio Stadium, Alex and I watched the Buckeyes beat the Indiana Hoosiers (http://www.davidlclick.com/blog/a-view-from-section-33b), oblivious to the eight weeks that would soon be our future. During the game, we cheered as the Buckeyes padded their playoff resume. We visited with old and new friends. We braved the constant, steady, fall wind as it whipped against our faces in the last row of the stadium. After the game, we stayed in our seats before leaving (note: wheelchairs and crowds do not mix well), and then made our way through lingering tailgaters to our parked van. As we drove home later that night, we stopped at a Fazoli’s restaurant in Grove City to warm our bellies and shake off our chill. I was sniffling. Alex was sniffling. The pasta was nice and warm.

That’s when I heard the first cough.

At first, I thought Alex swallowed something wrong and needed to wash it down with his blue Italian Ice. But, another cough soon followed, and then another, as he tried to clear his throat and apologized for his disruption to our conversation. A runny nose soon joined the party, and he asked for a tissue. I held a napkin to his nose as he blew the first of many blows that night. It was clear that a cold was in the making. Great.

No big deal, I thought. He’s fought them off before. Give him a week or two, and he’ll be as good as new, I thought.

That was then. This is now.

That was then was during his younger Duchenne years. Doctors had always warned us of weakened immunity with Duchenne. But, Alex always fought off colds with relative, and dare I say normal, ease. He seemed remarkably healthy during his early years, even staying cold-free over the past two. I remember thinking, hey, this depressed immunity thing may be overrated.

Not so fast, Dad.

As many Duchenne parents can attest, colds and Duchenne become friendly allies and often welcome one another with open arms. As if systematically destroying every muscle in the body is not harsh enough, Duchenne happily allows a simple, pesky, cold to set up camp and stay for as long it wants. In exchange, the common cold exacerbates Duchenne and reminds you of Duchenne’s merciless power and control over your son. Arms too tired to lift even a little, become dead weights during a cold. Lungs too tired to breathe, leave our sons exhausted for much of the day and night. Coughs too weak to yield phlegm, allow mucus to fester, often leading to infection or pneumonia. Throw in constant hacking, endless nasal, sinus, and chest congestion, and restless nights…for everyone, and the common cold can be miserable.

Through it all, we help Alex as best we can, though his strength dictates the severity and duration. We help him blow his nose constantly. We keep him well-hydrated to loosen his mucus. We use a cough assist machine to make his coughs more productive and help suction his lungs. We keep his spirits up when he is too exhausted to leave his bedroom. We strap on his BiPAP to help him breathe. We encourage him that his cold will be over soon.

Over eight weeks, however, that reassurance loses its luster.

Because of his cold, Alex is too tired to attend school. Instead, he has resumed home instruction where a teacher comes to the house for one-on-one learning. It's not ideal, especially for a social kid like Alex. But, it works and keeps him up-to-date as best possible. Besides, who wants to help a kid blow his nose all day, hear him cough constantly in class, and wipe mucus and phlegm off his lips? I realize personal aides are available, but I would think they have limits. Besides, why likely spread his cold to others?

It's not that his cold restricts him from everyday life. He still enjoys getting out of the house every now and then. Three weeks into the cold, Alex forced himself to enjoy Halloween trick-or-treating. Thankfully, it was a dry and wonderfully warm night and Alex enjoyed talking with every neighbor he could find and fill his pillow case with shovels of candy. However, the night flat-out drained him and he stayed in bed for nearly a week afterward.

Four weeks into the cold, nothing would stop Alex from attending his buddy Zach’s 17th birthday party. He enjoyed pizza, cake, and late-teen hoots and hollers with eight young men. He smiled and watched from his wheelchair as his friends jockeyed for position around a TV, playing video games late into the night. Ever the night owl, Alex called me around midnight (which is about two hours earlier then when he typically calls) to come home. The cold had taken its toll on him that night and he had as much as he could handle. The party wiped him out for yet another a week in bed.

In week seven, Alex endured two long and grueling days at Cincinnati Children’s Hospital during his annual Duchenne clinic visit. There, doctors, nurses, and technicians listened to his breathing, administered a Pulmonary Function Test, and took x-rays of his lungs. Thank goodness, his lungs were clear and he did not have pneumonia. But, his body was clearly exhausted. His PFT testing results were abysmal and concerned the practicing pulmonologist (though she agreed his continuing battle strongly affected his PFT results). She opened our eyes to his struggle by showing us how Alex’s pulmonary results were nearly half of where they were last year…when they then showed a 30% lung function…you do the math. After rotating the computer monitor for Alex and I to see, she proceeded to show us x-rays of his lungs that reinforced the seriousness of a common cold and Duchenne.

“See those black areas on the x-ray?”

We did.

“Those are his lungs,” she pointed.

They looked small to me. But, I am not a doctor.

She confirmed my thinking as she counted the number of ribs crossing the lungs.

“Normally, our lungs extend beneath about eight ribs from top to bottom.”

Uh-oh. This doesn’t look good, I thought to myself.

“As you can see for Alex, his lungs are crossed by three-and-a-half ribs.”

She made a small circle with her thumbs and index fingers and held it to her chest, for example.

“Duchenne has affected his lung capacity to about 25% of what you and I use….and that’s before having a cold for (then) seven weeks.”

She looked to Alex and shook her head in admiration. He offered a polite smile in return.

“It’s no wonder you are tired!”

It’s no wonder indeed! This kid has been dealing with breathing difficulties for eight weeks! And doing so with small, weakened, congested lungs! Talk about a fighter!

Later, his neurologists, Drs. Wong and Rybalsky, evaluated Alex and his x-rays, and charted a new course. Though not a cure-all, they prescribed an antibiotic to help him fight off any possible nasal or chest infection. We must continue to use his cough assist to suction any mucus out of his chest, nose, and throat. He must drink as much water as he can to stay hydrated. We must give him daily Mucinex to loosen his mucus. No matter how irritating his coughing may be, we must NOT give him any cough suppressant because doing so can worsen his ability to expel the mucus. We must no longer give him doses of Nyquil to help him sleep for the same reason (major guilt with that one). Hopefully, this path will lead get us back to normality.

So, here we are eight weeks and counting. The Buckeyes game is long in the past. The Christmas holidays are around the corner. A New Year is fast approaching. It is safe to say, the LAST thing Alex should be dealing with (aside from Duchenne) is a continuing cold.

As parents, we hope the antibiotics work and Alex’s mucus soon leaves. Although we are not out of the woods, we hope he has dodged the bullet with pneumonia, and can rid himself of his stubborn cough. We hope his nose dries up and he can breathe easier. We hope our dogs enjoyed their run of eating the endless supply of used tissues.

Alex, not surprisingly, battles onward. His smile never ceases. His bursts of laughter never stop (though are occasionally interrupted by a cough or sniffle). He never truly complains as most of us surely would while suffering such a lengthy cold.

Alex just rolls with the punches and lives his life the best he can.

As we all should.

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A VIEW FROM SECTION 33B

10/13/2016

1 Comment

I caught myself daydreaming last weekend at the Ohio State University football game versus the Indiana Hoosiers, and it led me to smile. I daydreamed not because the game was boring. It was awesome! Nor that I don’t enjoy football. I do immensely! It wasn’t because Alex wouldn’t carry a conversation. Ha! That’s a good one! Instead, my daydreaming was rooted in life with Duchenne and the perspective it shared with seats in the last row of Ohio Stadium.

This was Alex’s first Ohio State football game, and the collegiate scene could not have been better. The sun was shining with not a cloud in the sky. The air was cool and crisp, with a steady breeze. The leaves were just beginning to turn color and prepping to fall. The Goodyear blimp floated quietly above. Students enthusiastically welcomed us from the balcony of the Varsity Club as we drove onto campus.

Late to arrive, we parked on the top level of an eight-story parking garage. We rode a packed elevator down to street level and then navigated our way through a sea of Buckeye fans moving in mass towards the stadium. From his wheelchair, I’m sure Alex saw nothing but backsides. But, he didn’t care. He was in his element…people everywhere!

The scene outside and inside Ohio Stadium was alive! We strolled by tailgate party after tailgate party, equipped with tents, banners, and flags flying high. Grills were sizzling. Music and pregame commentary blared from speakers. Beer taps and red solo cups were abundant. Aromas of burgers, brats, and hot dogs filled the air, as did many enthusiastic shouts of Go Bucks! and O-H!...I-O! as we rolled along.

We witnessed fans of all varieties from future football stars in Buckeye onesies to graying Alumni. We chatted with many fans, including the scarlet and gray face-painted super fan, Big Nut. We tailgated along Woody Hayes Drive with old college friends and their families, reminisced about our bygone days of college football, and then caught up on the thirty-plus years since we last saw one another. Before long, Alex and I made our way to our alpine-level seats in the stadium, where we could practically see every one of the 100,000-plus football fans dressed in various shades of red.

It was a beautiful day to be a Buckeye fan!

The stadium buzzed with anticipation. TBDBITL pumped up the crowd, marched across the field, and then scripted Ohio. When the Buckeyes ran onto the field, Alex experienced how few events compare to major college football. It’s loud. It’s spectacular. It’s the heart and soul of a community.

High up, Section 33B offered us the entirety of Ohio Stadium. Immediately below, sat thousands of students, screaming, dancing, and drinking. Around the horseshoe, adults and alumni sat absorbed in the action with utmost attention. We watched with amusement as some shook their heads and threw their hands in dissatisfaction of the Buckeyes passing attack, but then nodded with clairvoyant wisdom for each score. On the field, we saw OSU head coach, Urban Meyer, drop his head in disappointment before his team finally hit their stride. Players, coaches, trainers, officials, bandies, recruits, reporters, photographers, cheerleaders, mascots…you name them, they were all there scrambling and jockeying for position on and around the field.

Alex enjoyed himself thoroughly, just as I imagined. He watched with delight as Brutus the Buckeye did push-ups after every score. He enjoyed hot dogs with mustard and ketchup. He chatted with ESPN cameramen, stadium ushers, elevator attendants, security personnel, and OSU and Indiana fans standing or sitting around us. He celebrated scores with the wiggle of his hands. He shook his head in amusement at the silliness of students’ behavior below. He replied Daaaaaddd whenever I jokingly told him YOU’D better not ever act like that!

Still, amongst the pomp and circumstance, the expansive view from Section 33B led me to daydream. I wondered if Alex saw the thousands of college kids, many only a year or two older than he, standing and cheering before him. How could he not? Surely, he saw them standing on the bleachers, jumping up and down, and waving their arms wildly for reasons they probably didn’t understand. Surely, he heard them praise officials for bad calls against their beloved Buckeyes. Surely, he saw them push one other in euphoria and celebration for every Buckeye score. Surely, he saw them having the apparent time of their life.

I sure did.

The scenes reminded me of scenarios I’ve dreamed over the years (and, admittedly, still do) as we raise a son with Duchenne. I couldn’t help but see the football players and think back to my paternal dreams of raising a young man in helmet and pads. I couldn’t help but see the students sitting before us and dream about Alex attending college, living on his own, and learning the constant balance of books, girlfriends, parties, and sleep. I couldn’t help but notice kids hopping down the aisles for a quick jaunt to the restroom, and think of the cumbersome and time-consuming effort it is now for Alex to simply use the restroom. I couldn’t help but see the students high-five one another and think how Alex resorts to arm-rest fist-bumps because he cannot lift his arms. I couldn’t help but notice the students stand and stretch, and think how Alex’s body must scream for movement after sitting in his wheelchair for sixteen long hours. I couldn’t help but feel a sense of loss for things he may never know or experience, things that many of us take for granted. I wondered if he had longings for the life spread before him. Life without Duchenne.

Maybe.

Maybe not.

Maybe it’s just me.

That’s when I shook off my daydream, looked to Alex, and realigned myself. Amid the crowd noise and colorful college football fervor sat a boy simply enjoying life despite his ever-worsening physical challenges. He wore a hooded OSU sweatshirt to protect him from the wind, with its drawstring pulled tight so that only a small circle of his face remained visible. He had mustard clinging to the corner of his mouth and a few bread crumbs scattered across the front of his sweatshirt. He sensed me staring, turned, and then flashed his beautiful smile.

If he had dreams of football or college life or girlfriends or any other such collegiate activity, he didn’t show it. He was content living his life, sitting with Dad, and watching football. He enjoyed smiling and imperceptibly waving to girls, eating hot dogs, and befriending sullen Indiana fans. That day, the world beyond his reach didn’t seem to faze him as it did me. If it did, he didn’t mention it. Instead, he simply loved the life he lived.

I took note.

As I have learned and as the football game last weekend magnified, with Duchenne comes perspective. It willingly encourages you to observe and reflect on life, as it teases you along the way. It holds no concern where you’ve been, where you are, or where you are going, because it dictates the pace. It holds no worry you’d ever leave, because it knows you can’t. It holds no concern it will intrude on your life, because it simply will. But, as much as Duchenne contains and restricts and never lets go, Duchenne allows you to see a beautiful world you may have never seen before. You see beauty in people of all types. You see beauty in the colors, smells, and sounds of life. You see what matters and what doesn’t. Strangely, in that peace and in that moment sitting in Section 33B, I thanked Duchenne. Without it, I’m not certain I would have ever held such perspective.

Alex could care less about what he didn’t have. He cared more for what he did have. He had tickets to an OSU football game, with his Dad, on a beautiful Saturday afternoon. He had a game day program and a couple of hot dogs with mustard and ketchup. He met new friends who took the time to laugh and smile along with him.

What more could you ask?

Spread before me was life as I once knew it.

Sitting next to me was life as I now live it.

…and it's beautiful.

Go Bucks!

1 Comment

A NUGGET OF HOPE

9/20/2016

6 Comments

Waking is a happy time for our son, Alex. Although, like anyone, he can be a tad grumpy some days, he typically rises with a stretching yawn and growing smile. I suspect Alex starts this way because he knows laughter will soon follow someway, somewhere, and somehow, in ways neither of us can predict. On any given morning, Alex endures bad jokes, blinding Dad dances, amateurish voice and character impersonations, or “come-on-Dad-I’m-seventeen-already” stuffed animal animations. I engage him in such an imaginative manner in hopes of getting his brain churning and blood pumping to start the day. Believe me, it works! You can almost see his mind turn on and his body energize during the exchanges. Honestly, there is no purer sight than Alex’s morning smile and no more genuine sound than his belly laugh.

Some mornings, however, are starkly different.

Like yesterday…and for good reason.

Yesterday, I woke him quietly and pleasantly, allowing him to acclimate himself to the stillness of the day and the sunlight sneaking through the slatted blinds. I didn’t jump up and down on his bed as he likely expected. I didn’t use wild imaginations as he likely anticipated. I didn’t speak to him in an altered voice or display dance moves seen on Ellen. No, yesterday I just tapped his shoulder, whispered good morning, and then waited for him to rise without fanfare. The awakening was subdued, but worked just as well as he quickly sensed something amiss and opened his eyes wide and searching.

“Why are you just standing there?” he said through his nasal Bi-PAP. He strained to look around, searching for clues before squarely turning back to me with confusion. Something was up, he could tell.

I turned off his Bi-PAP and removed the flexible tubing and elastic head straps.

“Because it’s a good morning,” I stated simply with a knowing smile.

It was a good morning because, earlier in the day, the Food and Drug Administration granted accelerated approval of the first drug to treat Duchenne Muscular Dystrophy. The drug is called Eteplirsen and had been subject to scrutiny and delay for many years leaving Duchenne families frustrated and concerned. Eteplirsen is an exon-skipping drug specifically designed for Duchenne boys missing exon-51, approximately 13% of the Duchenne population. The news is hopeful for all boys and families with Duchenne because it opens the door for financing, research, and approvals for various Duchenne trials and studies.

Nonetheless, as I stood before Alex yesterday morning, I debated whether to share the news. I struggled with the idea because Eteplirsen did not directly impact him (Alex is missing exons 49-54), and I certainly did not want to mislead him. Would he understand this is not a cure? Would he understand the drug still requires study? Would he be happy or sad? Would he hear hope or discouragement? Would he feel left in or left out? Would he grasp the significance of today? What should I do?

On seeing his searching eyes and the reddened strap-marks creased across his cheeks, I knew. On seeing his flat, immobile, position in bed, and his contracted legs bent less than ninety-degrees at the knees beneath the sheets, I knew. Upon knowing the physical exhaustion of Duchenne kept him from school again yesterday, I knew. The FDA news could only help. He needed this. He needed something.

“Hey, I’ve got some news to share with you.”

Alex furrowed his brow in mild confusion, still wondering when the jokes would begin. He would have sat up straight with baited interest, if he could, but he resigned himself to lying flat instead. Waiting. As always.

“Remember when I told you about the drug Eteplirsen?”

He nodded.

“Well, this morning the FDA…”

When I finished, Alex didn’t say a word and I wondered if he fully grasped what I had shared. I wondered if sharing the news wasn’t such a good idea. Did I give him false hope? Did I cause him to consider his situation in contrast to boys who would directly benefit? Perhaps I should have resorted to our imaginative ways instead.

Then, from his supine position, Alex slowly and deliberately walked his fingers up his chest one inch at a time. When his hand reached his mouth, he hooked a finger in his cheek and turned his head to pull his arm even higher (he does this when he wants to reach something above his head or on the other side of his body). He then resumed his finger-march up his face and towards the side of his head. I knew immediately what he was doing and smiled in recognition. Tears gathered in the corners of my eyes in anticipation of what was to come.

When his fingers reached just above his temple, Alex clenched his fist. He then exploded his fingers from his head as if to say his mind was blown. He then dropped his arm and feigned fainting in disbelief. Just as quickly, he opened his eyes and turned back to me with excitement. A huge smile simultaneously formed across his face.

“Really!?” He said with bursting enthusiasm.

“Yes, really,” I replied happily, thankful for his reaction.

He turned his head and looked toward the sunlight streaming through his window slats.

“Seriously?” he sought to confirm.

“Yes, seriously,” I said with a smile.

I then explained the specifics again. I explained that approval comes with conditions of successful trials. I reminded him Eteplirsen only addresses exon-51. I reminded him we are still years away from definitive results. I reminded him of the obstacles yet to cross. I reminded him it’s not a guarantee. I reminded him…

Alex didn’t care. He had been waiting for something, anything, to hold onto…for years. Now, instead of politely nodding when his neurologist, Dr. Wong, explained how doctors are working hard to find a cure, he could see progress. Now he could sit up attentively in his power wheelchair and listen. Things were becoming real. Now, instead of thinking Duchenne as incurable, he could hold onto hope that maybe…just maybe…a cure was possible. He understood the scale of years, but didn’t care. A cure for Duchenne was at least a possibility someday, perhaps in his lifetime, and he couldn’t be happier.

His stream of thought then advanced in rapid fire, and pulled at my heartstrings.

“Dad, it would be SO cool if I could walk again, wouldn’t it!? Oh my gosh! But, I know it would probably take a while. Wouldn’t it? Do you think I would remember how to walk? I mean, I remember, but maybe my legs don’t remember. Maybe they will need to be taught again. And, the ground! I’ll feel the ground again! That will be weird. I wonder how my feet will feel against the ground? And, I’ll be able to turn around and see who is behind me! Nobody will be able to sneak up on me anymore! Do you think I’ll be able to stand up straight? Will my back be strong enough? I wonder if a cure for Duchenne will help my back? Do you think it would? I wonder if I will remember how to run? Will my legs cooperate? They’ll probably need to learn how again…..”

His thoughts were endless and absolutely beautiful!

I watched and listened in awe. He deserved this feeling. There, before me, lay a kid who simply wanted what most of us take for granted. He wanted his arms and legs back. He wanted to walk again. He wanted to sit up. He wanted to turn around. He wanted to run, if not to be so greedy.

He wanted to be like anyone else.

The FDA may have simply approved a new drug. They may have conditioned their approval with countless caveats and legal escape clauses. But, they cracked open the door for new research and possibilities even a kid could understand. They may have given some scientist or researcher an idea that is still years from effectiveness. They may have given support to those currently working hard to find a cure. But, more importantly, in this household…in Alex’s bedroom…news from the FDA ignited a spirit. Even though Eteplirsen will not help Alex, even if the road to one that does is probably long and remote, one thing is certain. Yesterday, the FDA gave a boy a nugget of hope. And, sometimes…that’s all that matters.

Alex ended his feelings with one simple yet beautiful statement. He expressed this to me with a full smile on his face and a faraway look in his eyes as he looked to the sunlight pushing into his room.

“Dad…if I could walk again…that would be awesome!”

Yes, Bud, that would be awesome indeed!

6 Comments

EVERYBODY POOPS

8/25/2016

23 Comments

It's a well-known fact that everybody poops. You poop. I poop. The POTUS poops. The Pope poops. Queen Elizabeth II poops. Hillary and Donald poop. In fact, all celebrities, athletes, police officers, teachers…you name them…they all poop. However, it's a lesser-known, and little-shared, fact those with Duchenne Muscular Dystrophy poop. Look it up, or ask someone who's been there. Pooping and Duchenne is an adventure to say the least.

I am not trying to gross you out, or write about something that makes you uncomfortable. If this subject does, or causes you to shake your head in disapproval, then please stop reading. I am simply trying to share a little light on something those living with the monster understand all too well, and secretly wish others knew about their daily struggle. So, if you are open to reading about a natural, though challenging, part of life with Duchenne, please continue reading with an open mind and a sense of maturity.

When your son says “I gotta go number two,” or something similar, that is when Duchenne parents release a deep sigh, roll up their sleeves, and respond…

“Okay, let’s do this.”

We reply this way because, in reality, we have no choice, nor do our sons. We also say it because there’s no better way to address this subject than tackle it head on. We can’t wish it away. We can’t ignore it. We can’t help our son with half an effort. When he needs cleaned, he needs cleaned. There are no shortcuts involved. He needs our full attention, because when he has to go, he has to go, and he cannot do it without our help. Start to finish, it takes a while (sometimes up to an hour)…but, that’s just life with Duchenne.

Calls from nature involve teamwork, cooperation, and a lot of trust. We must work with our sons for success, mostly during the day though sometimes in the middle of the night. Our sons expect us to treat them with respect, dignity, and maturity. They don’t want us to make a big deal about it, as well we shouldn’t. Equally, we trust our sons to let us help them with a very private aspect of their life.

For us, it was a learning process that evolved consistent with Alex’s age. During the early years of our Duchenne journey, he used a toilet like anyone else. His weight was manageable and he climbed onto the toilet unassisted or with minimal help. Later, when he struggled to climb up or could not clean himself effectively because of weakening muscles and imbalance, we helped and life was good.

Things became interesting, however, when Alex starting using a wheelchair in the Third Grade. Because he could no longer walk, he could not exit his wheelchair and move to the throne. To help, we developed a piggyback transfer method, where I squatted in front of his chair, secured his arms over my shoulders, and then stood. After carrying him to the toilet, I turned around and carefully lowered him down. We used this transfer method everywhere…at home, friends’ homes, restaurants, hotels, and even school.

Although his school offered use of a smooth, wooden, transfer board to slide him from his chair to the toilet, Alex preferred the piggyback method. We were fortunate his elementary and middle schools allowed us to use spacious bathrooms in the teacher’s lounge or special needs classroom. Once parked in privacy, I would piggyback him from his wheelchair to a nearby bench or table, undress him, and then piggyback him from the table to the toilet. When he finished, we reversed the process. We had this method down to a science.

I helped Alex go to the bathroom nearly every lunchtime. While he did his business, we would chat about his school day, his friends, girls, or even do some last minute studying for an afternoon test. Looking back, we had some wonderful, father-son bonding conversations in the school bathroom just sitting, laughing, and talking. Fond memories, indeed.

As Alex grew older and his weight increased from immobility and steroid use, I could no longer safely transfer him by piggyback. For example, we laugh (thankfully) about a time at Pierce Point Cinemas, when Alex had to go number two during a movie. After my incredulous reaction of you’ve GOT to be kidding me…NOW?, we made our way into an accessible stall in the public restroom. Without a transfer table, we decided to piggyback and then remove his pants on the toilet (i.e., shift them back and forth until they come off). It was not ideal, as it led to slumping and uncomfortable repositioning. It was also not ideal that I piggyback a growing boy who, at the time, approached my body weight in size.

Not surprisingly, things did not go as planned.

After Alex backed his chair into the stall, I squatted to pull him onto my back. With his arms over my shoulders and his hands securely clasped in mine, I stood or at least tried to stand. Because of my failing ability, his increased weight, and gravity, I lost balance and we fell to the floor. With Alex's full weight on my back and my face on the clean checkered tile, we could clearly see beneath the stall door that nobody was around to help. We were alone, stuck, and unable to move. We laughed in hysterics.

I remember lying there thinking…Okay, it's up to us to figure this out (which, by the way, is a common theme with Duchenne).

As Alex hung on for dear life, we slowly inched our way back up and then eventually onto the toilet. Once in place, everything else went smoothly, normally, and naturally just as we planned. Although we missed most of the movie, THAT father-son moment will never be forgotten...by either of us.

When Alex developed back issues beginning in the Seventh Grade¸ we abandoned use of a toilet. His spinal compression fractures were painful and debilitating and he was bedridden for nearly five months.

When that first call from nature sounded, we didn’t know what to do. I couldn’t piggyback him to the toilet because of his pain or transport him via a Hoyer lift for the same reason. We had heard of fracture pans, but did not have one. I remember trying a baking pan instead, but that caused him severe discomfort. We considered towels, but were not sure of their capacity to contain everything. We settled on adult diapers and a quick run to the store while he patiently waited. Once secured, we then gently turned him on his side. With the help of some strategically placed pillows and towels, we were ready. The method worked wonders then, and still does today, five years later…and even the other night at 3AM.

Today, as a 17-year old high school Junior, if Alex has to go, I pick him up and take him home to conduct his business. I’ll then take him back to school if he is not too exhausted from sitting in his wheelchair or if it’s not too close to the end of the school day.

Though unpleasant, perhaps the biggest worry about number two and Duchenne is the dreaded indigestion. Nobody likes this. If our sons are sick or have an upset stomach, things get real interesting, real fast. In fact, our proficiency is tested and performed in fast-forward to make things work cleanly and efficiently. We just roll with the punches and work to keep things contained. It isn’t pretty. But, often life with Duchenne isn’t pretty.

I share all this because we have found that acceptance and creativity are essential with Duchenne, especially when our sons are older, heavier, and unable to move. Our sons learn to accept full exposure and we learn to treat it like it's no big deal. Because, it isn’t. It's life, and sometimes life with Duchenne needs a little exposure so others can understand the challenges involved.

The bottom line is that you may surprise yourself on how you address this natural act. Many use a hoist and transfer to the toilet. Some use a hoist and bucket, if the urge cannot wait. Any method takes time to undress your son, transfer and position him, and then let him do his business. It then takes more time to clean him, transfer him back to his bed, dress him, and then set him back up to whatever he was doing before he had to go. Like anything else, practice becomes routine with time, and soon you won’t even think twice about it. We have found that patience, maturity, and improvisation are the keys to a successful experience. A good supply of vinyl gloves and sturdy wet-wipes work wonders, too.

Whatever your method, just know that if it works…it works…and that’s all that matters. It doesn’t matter how you do it, just that you do it because it must be done. You may also discover, as we have, that it’s a trusting and bonding time with your son.

So, if you’re still reading this blog post, thank you. I sincerely didn’t intend to make you uncomfortable. Although some may consider the subject unpleasant or crossing the line of appropriateness, what can you do…

This IS life with Duchenne…

…and just one part of the daily grind.

Besides, everybody poops…remember?

23 Comments

RICKY

8/20/2016

2 Comments

The Duchenne community lost a dear friend this week in Ricky Tsang, and truthfully it’s an odd feeling. Ricky was one of those life constants you always expected to be there, though knew you would lose someday. His frequent and inspiring posts always brought a smile to my face because I could hear him. He expressed himself beautifully, honestly, and thoughtfully. He simultaneously made me nod and shake my head towards his daily struggle against Duchenne. At times, it seemed, I could feel his pain.

At the ripe age of 35, he was one of Duchenne’s senior citizens, and arguably one of the most vocal. Sometimes ornery but always caring, Ricky was honest, loving, and compassionate with a heart of gold. He was equally a romantic smooth talker and crotchety straight-shooter. He was quick-witted, strong-willed, and skilled with the written and spoken word. Sometimes sensitive to a fault, he put himself out there for all to see, hear, and read.

Our community’s love and admiration for Ricky was bountiful. Just read any of the hundreds of posts from his Facebook friends. They are ALL beautiful and reflective of his gentle soul. We loved Ricky and he loved us more. He cared passionately for everyone (especially women) and offered his counsel, wisdom, and perspective about life with Duchenne to anyone who asked. He was a trailblazer in the grips of constant pain. He was a torchbearer in the face of approaching darkness.

Still, I can’t seem to wrap my mind around his death. It's a strange feeling – here one day, gone the next. I still hear his voice. I still feel his determination to live. I still expect to read his daily advice on how to understand women, live with Duchenne, and never give up. I still expect to hear about a secret visit from Taylor Swift. I still expect to watch his videos about life, his wonderful family, and his heartfelt love letter to his future wife. Despite this odd feeling, I know Ricky will never fade from my memory. His voice will stay with me for years to come.

Ricky was special to so many because he spoke not only for himself...

...but FOR us.

The least we can do for Ricky is listen to his voice and never give up our fight against Duchenne.

He'd want it no other way.

2 Comments

THIS TIME OF YEAR

8/11/2016

9 Comments

This time of year is forever etched in my soul. For over thirty years now, the smell of freshly cut, dew-covered, August grass immediately takes me back in time to a place of unforgiving coaches, crushing hits, and hard, sun-baked grounds. This time of year I can still feel bruises and aching muscles, skinned knees and elbows, and pounding headaches. This time of year I can still hear coaches bark HARDER! FASTER! AGAIN! and even DAG GUMMIT, CLICK!! THAT WAS PATHETIC!! This time of year reminds me how to push myself through incredible pain and fatigue to do it all again the next day. It reminds me of the purpose and value of picking myself up when knocked down, hitting back harder than I did before, and pushing through my burning desire to stop. When I recall my fondness for those hot, humid, and seemingly endless August football practices, I can’t help but smile at the values they instilled, especially as we live today with Duchenne Muscular Dystrophy.

Life with Duchenne is no fun…for anyone, especially for our boys. But, it’s a challenge for caregivers as well. Although I would not change my role as Alex’s caregiver for anything in the world, I’m here to tell you that caring for a boy with Duchenne is no picnic. There are no Bon-Bon’s involved, a good night’s sleep is foreign concept, and you don’t go home at five. Caregiving for Duchenne is performed around the clock. It taxes you emotionally and physically more than you would ever imagine. With Duchenne, you serve the needs of a child who has the brains of an adult and the body of an old man. Day after day after day…night after night after night.

Don’t get me wrong. Caring for Alex is both a privilege and blessing. As many can attest, he is an incredible young man with a heart of gold and a contagious smile.

But,…

It’s the constancy of Duchenne that wears on you. This disease is with you, your son, and your family all day and night, stubborn to leave and at times laughing at your fumbling inability to manage it. Sure, Duchenne may head to the sidelines now and then as life distracts you. You are certain to experience good times when Duchenne seems a distant thought among your family’s treasured moments like vacations, celebrations, or simply enjoying a meal together. But, rest assured, Duchenne is there. Having weaved itself into the fabric of your lifestyle, Duchenne never leaves. Be it lifting, turning, feeding, dressing, grooming, massaging, washing, wiping, giving, fetching, stretching, searching, positioning, explaining, defending, fighting, hoisting, helping,…you name it, Duchenne never lets up. All the while, the bully camps, spreads, and plots its next real estate grab on your son. It’s frustrating on many levels.

Alex gets this, as do many boys and men with Duchenne I’ve come to know. They see Duchenne’s toll upon their caregivers. They see the tired eyes, fatigued bodies, and dragging feet. They hear the occasional edgy voices, heavy sighs, and veiled frustrations. They get it, and wish hard they could do something more to help. However, they often have no choice but to ask. At times, the exchanges can be like pleasant negotiations where both sides willingly and happily meet in the middle. Other times, the conversations collide like two bulls in a china shop where tempers are short and messy and the needs are many and compounding. That’s just the way it is with a disease that never stops and nor cares of the havoc it creates. You just learn to live with it.

With Duchenne, it’s important to understand that as your son’s condition worsens, YOU the caregiver must strengthen mentally and physically. As your son matures, you must find ways to manage his increasing weight and immobility as well as his declining abilities to function and simply breathe. He needs you, and you know it.

It's an evolving awareness. In the early years, you become his legs and carry him often. You boost his confidence as he notices himself falling behind. You show him emotional and social strengths as he transitions to a power wheelchair in stark contrast to his peers. You learn competence with Hoyer lifts and joysticks, as well as ramps and unwieldy accessible vans. You adapt to ignorant and oblivious crowds, inaccessible sidewalks and storefronts, and friends’ inaccessible homes. You shrug off spilled drinks, wet beds, and stained clothes. You comfort him as the number of his visiting friends declines. You display strength, patience, and compassion when he looks to you for answers to life’s hard and difficult questions. You guide him through life’s changes and harsh realities as his Duchenne advances. In the latter stages, you learn the vital importance of cleaning his trachea, suctioning mucus from his lungs, and maintaining his medical equipment. Through it all, you become his confidant, cheerleader, and reliable go-to. You become his dependable ally, strongest fighter, and ultimate role model on how to live. He looks up to you and you cannot let him down.

You learn to do all this because Duchenne never stops. It’s relentless, and so you must be, too. You do it else get bulled over by the unforgiving monster. Duchenne ONLY becomes easier if you keep on grinding and tackle it one day at a time. And then do it again and again and again.

So, for me, I say thank you to my coaches Piper, Thome, and Bickel. Thank you coaches Focht, Tatman, and Beverage, and many others who have molded me through the years. I can still hear your loud, unimpressed, though encouraging, voices pushing me onward to do and be my best. I can only hope those hot, humid, and endless August practices have rooted somewhere deep within me.

I used to think this time of year was all about football. I used to think it was all about the game. But now, when I smell that fresh-cut grass, I know.

It’s about life and how we live it.

This time of year is my reminder to ALWAYS help my son…

…laugh,

…love, and

…live the life he’s dreamed!

Bring it, Duchenne.

9 Comments

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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

ALL I WANT FOR CHRISTMAS

EIGHT WEEKS AND COUNTING

A VIEW FROM SECTION 33B

A NUGGET OF HOPE

EVERYBODY POOPS

RICKY

THIS TIME OF YEAR

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