David Click's Blog, page 4

THE AMAZING POWER OF SOUP AND BOOKS

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.

IN DUCHENNE

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.
 

ALL I WANT FOR CHRISTMAS

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?
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EIGHT WEEKS AND COUNTING

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.

A VIEW FROM SECTION 33B

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!

A NUGGET OF HOPE

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!

EVERYBODY POOPS

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?

RICKY

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.

THIS TIME OF YEAR

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.

THE KID IN A WHEELCHAIR

Alex and I recently attended a special one-night premiere of Batman – The Killing Joke. It's a DC Comics animated movie starring Mark Hamill as the Joker and, from what I remember, offers a glimpse into the origins of the infamous rivalry. The movie started at 10:30pm on a Monday night, competing with my body’s constant need for sleep. Unfortunately, the movie involved a dark theater, extended previews, and semi-comfortable seating - all recipe ingredients for a slumber. Which I did, of course, as we both expected.
 
Nevertheless, the mood was festive for a late night premiere. The crowd was energetic, though sparse, and restless with expectation. Strangers nodded hellos and exchanged smiles. Some were in costume. We talked with familiar theater workers and random patrons. We chatted with Alex's good friend, Liam, and others in his family. We enjoyed ourselves as usual – Alex watched one of his favorite characters on the big screen and I settled into my unintentional, though predictable, nap. Afterwards, as we drove home well after midnight, I smiled that our brief trip was not unlike any other. As those who know will agree, trips with Alex are not necessarily about the destination. They’re about the experience and people you meet.
 
If you’ve never joined us on a trip around town or elsewhere, you should, because going out with this kid is eye-opening to the goodness of humanity. Be it a visit to Target, the Cincinnati Zoo, or Children’s Hospital, Alex connects with people. When we attend the Baseball Fantasy Camp for Kids, Alex cherishes every moment with fellow campers, Reds players, Mr. Redlegs, and even Reds Owner, Bob Castellini. If we visit restaurants, such as Buffalo Wings and Rings, Skyline, or LaRosa’s, Alex enjoys chatting with servers, hostesses, or table bussers. If we visit bookstores like Half Price Books, Barnes & Noble, or Joseph-Beth, Alex talks superheroes or Star Wars with anyone who will listen. Looking for fresh air or chasing Pokemon Go in the Helicopter Park, Juilfs Park, or on the sidewalk? Alex will find you – especially if you are walking a dog or two. Essentially, wherever he goes, Alex makes friends, encourages people to smile, and gets strangers to laugh along with him.
 
Wherever we travel, Alex puts himself out there with no expectation other than friendship. Don’t get me wrong, the kid is a talker! Those who know him will certainly agree. But, his sincerity and hope to improve your day is genuine and beautiful to witness. He doesn’t care that he sits and others stand. He doesn’t care that he rolls and others walk. He doesn’t care if you’re young or old, quiet and shy, or loud and outgoing. Alex is comfortable with himself, despite his physical limits, and simply zips around in hopes of meeting a new friend.
 
Here is just a sampling:
 
Recently, outside our new favorite restaurant, Zoup, we found our van entry blocked by a car parked partially on the handicapped stripes. We patiently waited as an elderly African-American man opened the car door for his wife and then started the long journey to the driver’s side. While we waited, Alex kindly asked the man how he was doing. The man, somewhat shocked by the gesture, stopped and responded with a smile that he was well and similarly wished us a good day before continuing on his way.
 
Alex wasn’t done. He told the man he liked his voice.
 
His VOICE!
 
How many times do you hear THAT from a stranger? Let alone a teenager?
 
The comment caused the man stop, pivot, and then release a huge smile and words of thanks to the fine young man. The man’s smile, delight, and gratitude for receiving the compliment continued as he walked around the car and stepped inside. Once in the car, the man clearly shared Alex’s words with his wife, who in turn smiled and waved lovingly as they drove away.
 
During a recent Kroger trip, an autistic bagging clerk responded to Alex’s fist bump and well wish to have a nice day. The clerk smiled proudly and said “I will, because I feel that I can conquer the world after meeting you.”
 
On that same trip, Alex befriended a couple at Half Price Books by rolling alongside while they browsed movies. He simply said hello and asked them if they liked Star Wars. The introduction led to discussions of which episode is best. It then led to conversations of Star Wars Battlefront on PS4, which led to exchanged screen names. Now, not surprisingly, they are online gaming friends. Go figure. When I read Alex’s PS4 network message to them later that night, I couldn’t help but smile at his confidence. It read:
 
“Hey! How are you doing? I’m the kid in the wheelchair who you met at Half Price Books.”
 
Amazing.
 
Still, there’s more.
 
Alex LOVES drive-through window attendees, and often says hello over my shoulder from his wheelchair. Despite the line of cars behind us, I’ll power down his window so he can ask how they are doing and if they know about a movie coming out that week. He’ll thank them for serving his food and always wish them a good day. As we pull away, we’ll often see the worker leaning out the window and waving with a smile.
 
He LOVES everyone at Target stores, and knows many workers on sight or by name. When he arrives, he receives fist-bumps of hello and queries of his day. He’ll talk with shelf stockers, managers, cashiers, and even undercover security personnel (though they try to avoid it). In fact, when Alex recognizes an undercover agent, he’ll point them out and approach to ask if indeed they are working undercover. Within minutes of their embarrassment for being recognized, they are then seen chatting and laughing with Alex while I continue shopping. Similarly, checkouts at Target are like family reunions, as is when Alex sees the cart-corral guy in the parking lot while I load groceries in the van… you get the picture.
 
Alex LOVES restaurant servers and they love him. Though he makes friends wherever we go, his favorites work at Skyline, LaRosa’s, and Zoup! He’ll linger on a menu to keep the server around. He’ll ask for a drink refill, even if he doesn’t need one, just so he can stay longer. He’ll tell waitresses they are pretty or have nice hair or that he likes their eyes, and they in turn shower him with smiles, laughter, and conversation. One waitress at Buffalo Wings and Rings recognized Alex from her time serving tables at another restaurant. She approached from across the restaurant (we were not her table) just to say hello and to tell him how she never forgets a smile!
 
He LOVES “old people” (as he calls them)! At my recent 35th high school reunion, Alex confidently mingled with my friends who he barely knew. While I reminisced about summer nights, legendary sports, and general good times, I looked over to see Alex surrounded by smiles, laughter, and fist-bumps as if HE was back in town for HIS reunion.
 He LOVES celebrities, performers, or performers with pets…even skunks!! He’ll hang around and patiently wait until everyone has left and then approach the stage to tell them how much he enjoyed the show, sneak a picture, or maybe get an autograph. Though his ultimate desire may be the conversation, many performers equally indulge the attention for a match made in heaven.
 
He LOVES his buddy Zach’s family, including Zach’s five brothers and sisters, Mom, Dad, Aunts, Uncles, and Cousins. They make Alex  feel welcome and a part of the family every time he visits, even when he stays past midnight filling their house with hoots and hollers of video game success. He looks forward to their celebrations, graduations, and their annual Chili Fest every fall as well as their acceptance of him into their home.
 
I share all this because, if you haven’t noticed, wherever he goes…..Alex LOVES!
 
He doesn’t matter a person’s appearance, background, ethnicity, education, or nationality….Alex LOVES! Could you ask for anything more in a seventeen-year-old kid? Especially one living with Duchenne Muscular Dystrophy?
 
In a world mixed with aggression, loudness, and hyper-sensitivity, I find the most beautiful, peaceful, and arguably wisest perspective of life comes from someone who boldly and proudly introduces himself to strangers as the kid in a wheelchair.
 
This comes from a kid facing tremendous adversity in an increasingly mobile world. It comes from a kid with more going against him than many experience in a lifetime. It comes from a kid who accepts himself and his limits, and accepts you and yours. It comes from a kid who makes the most of his day, laughs about his past, and tries not to worry too much about his future. It comes from a kid who doesn’t focus on who he is not, but who he is. It comes from a kid who simply wants to love and be loved.
 
At the end of the Batman movie, I awoke to find a hand gently resting on my shoulder. I looked up to see Alex shaking his head with a knowing smile as if to say Dad, Dad, Dad, you did it again!
 
I yawned, stretched, and apologized, “Sorry, Bud. I didn’t mean to fall asleep. Did you enjoy the movie?”
 
Alex replied, “It’s okay, Dad. That’s just who you are….and, yes, I did! It was awesome!”
 
He paused, and then added with a hopeful smile…
 
“Ice cream?”