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.
I just want it to go away.
These aren’t my words, though they could be. These words are Alex’s. They’re raw, honest, and from the heart. They also spilled into my side late last Saturday night while I cradled Alex's head outside the Eastgate Skyline restaurant. His good friend, Zach, stood by his side in support.
The night before, the young men kicked off a weekend of video games, movies, hoots, and hollers. While Kristy and I enjoyed our traditional Friday Night Pizza and Beer, the boys' gaming voices echoed throughout the house. It's a beautiful sound when you think about it - two young men enjoying a lasting friendship in the midst of Duchenne. The support that ensues is immeasurable and beautiful.
By 10pm, the adults faded away and the boys continued onward. I sleepily responded to several calls throughout the night for more pizza, snacks, and waters. Around 6am the next morning, the boys called it a night while Kristy poured the first cup of coffee. Not surprisingly, Alex and Zach slept most of Saturday.
On their waking early in the evening, they ate lunch and prepared themselves for another late-night adventure. Our first stop would be Kong: Skull Island, at the Milford Cinemark Theaters. We hoisted Alex out of bed and into his wheelchair, secured him in the van, and drove into the cold night. Jokes, music, teasing, odors - all Dude Trip necessities we have perfected over the years – filled the van. The theater was packed, the movie was good, and afterwards, our bellies growled for food.
We settled on Skyline, one of our favorite staples. After parking remotely (because the ONE van accessible handicapped space was taken…don’t get me started), we made our way across the parking lot and into the restaurant. For those who haven’t been to the Eastgate Skyline, the glass door entrance is a bit of a zig-zag for wheelchairs because the outside door is on the left and the inside door is then on the right. In the space between, Skyline unnecessarily adds a gumball machine, a wire rack of magazines advertising apartments for rent, and a wooden rack advertising jobs and cars for sale. All glaring obstacles to novice drivers, but Alex expertly navigates the course every time. I don’t know how he does it! Though I would soon gain an appreciation.
Inside, we found our favorite spot. Our server placed crackers, napkins, and forks on the table and memorized our menu-less orders (anyone who knows Skyline, knows that menus are taboo). Cheese coneys with mustard and onion for each of us, three-ways for both Zach and I, and spaghetti with cheese only for Alex (the chili makes things a bit messy for him). After a sprinkling of hot sauce, we talked about school, NCAA hoops, and girls. The boys nodded their cool-headed hellos to other high schoolers sitting nearby.
Life was good.
Because Alex can no longer lift his arms, I help him eat. At Skyline, I spun spaghetti on his fork, placed the fork in his hand, and then raised his arm to his mouth so he can feed himself. All went as planned, until midway through the meal when Alex asked to be sat back in his wheelchair because he was uncomfortable. This is not uncommon and typical for him as his spinal compression fractures often bring discomfort while sitting for long periods of time (remember we had been at the movies).
“Ugh! My stupid back!” he announced, signaling a familiar tune.
“No problem,” I told him (note: we’ve done this thousands of times before…literally). “Just roll away from the table and I’ll lift you back.”
He did. I did. And after multiple re-positions for comfort, Alex returned alongside the table to continue eating. Before long, his back bothered him again, so we repeated the effort. Later, when we finished our meal and leaned back in fullness, Alex asked to be sat back a third time. Again, not uncommon. But, afterwards, Alex still fidgeted and leaned his chair back and forth to find relief. It was clearly apparent Alex was uncomfortable and needed to get home. We left our table.
That’s when our night changed...dramatically, and the relentless, unforgiving nature of Duchenne crashed our party yet again.
While backing away from the table, Alex said he was feeling a little dizzy. I told Alex to follow Zach outside for some fresh air while I paid our bill at the checkout counter. I reached for my wallet and nodded pleasantries to the cashier. I considered Peppermint Patties for the boys.
That’s when I heard the crash. Heck, the whole restaurant heard the crash!
I looked to my left and saw the back of Alex’s chair banging into the glass door as he struggled to drive through the zigzag entryway. At first, I thought Alex just had trouble maneuvering through the obstacle course. But, that was unlike him. Usually, he can turn his chair on a dime. I then noticed Zach desperately trying to hold open the interior door with his fingertips, at the same time dancing on his toes to avoid being run over. That’s when I noticed Alex’s head bobbing uncontrollably as his chair reversed and slammed again with abandon.
Something wasn’t right.
I immediately ran to Alex’s aid, thinking he was stuck, only to find his eyes rolling back in his head and his arm falling away from his wheelchair joystick.
He slumped…UNCONSCIOUS!
I’m telling you, that scared the hell out of me! Alex has been dizzy before, but it was ALWAYS controllable. He NEVER passed out! We had discussed the issue before with his doctors and they told us he could be experiencing hypoglycemia or rapid drops in blood pressure, which would cause the dizziness. They said the episodes may be related to pre-diabetes, heart issues, neurological issues, or simply dehydration. They tell us he is at risk for these health concerns because of his Duchenne and related obesity and immobility. They tell us to watch for when the episodes happen, take note, and do our best to calm Alex when they do. His dizziness is typically brief and quickly relieved through hydration, fresh air, and steady breathing. All well and good when Alex is responsive. But when he’s not…
I quickly told Zach to hold the outside door as I grabbed the joystick and maneuvered Alex through the glass maze. I was determined to get Alex outside immediately (I am sure the Skyline manager thought we were ditching the bill). Though somewhat skilled in steering Alex’s wheelchair, I slammed it into the wire and wooden advertisement racks, sending the racks sprawling to the ground and the magazines flying everywhere. Thankfully, I avoided the gumball machine. During the frenzy, I also managed to slam Alex’s hanging arm into the exit door jam. I was desperate.
We made it outside where I cradled Alex’s head, held his hand, and urged him to breathe. Zach stood by in silence as he was clearly shaken. He saw Alex’s purple lips and pale skin. He saw Alex slumped and still. He was concerned, as was I. During that moment, I clearly remember thinking worst case thoughts and not now, not now! Not that there EVER is a good time, but Alex has a life to live! All kids do! I know some of you may think it was only fainting. But, when your son is limp and unconscious in your arms, it’s a frightening experience…and a cruel reminder of this horrible disease.
About ten seconds later, Alex thankfully regained consciousness. As a parent, the feeling of relief was incredible and I hugged him close! As a friend, I am certain Zach felt the same way, as I remember him saying “Dude, you scared the crap out of me.” But, as a kid with Duchenne – the one shouldering the hardship - I could see that feelings of concern, worry, and fear gripped Alex hard.
“Dad, what happened? How did I get out here?” His first words shared as we waited for him to recover.
“You passed out, Bud. We got you outside as quickly as possible.” I nodded towards the magazines scattered about the floor.
“Whaaaat?" he said woozily. "I don’t even remember coming out here. The last thing I remember was not being able to see. Everything was dark. I couldn’t find the door!”
Zach stood by shivering in the cold. “Dude, you about ran me over!”
“Really?” He said with concern. “Sorry.”
“No need to apologize,” We told him. “Just keep breathing deep. Everything will be alright.”
I looked up and saw a Skyline worker cleaning our mess. I apologized. He said don’t worry about it, then asked if we were okay. I told him we were fine, and that Alex just needed some fresh air. I assured the kind man I would be in soon to pay our bill. I then told Alex I need to go inside, and started to pull away from cradling his head. Alex clutched tightly.
“No, hold me, Dad! Don’t leave me.” I obliged without hesitation as any parent would.
“Hey, we’re never going to leave you, Bud!” Alex pushed his head deeper into my arms.
“Why did that happen?” he asked quietly while staring at the ground.
“I don’t know. Perhaps I didn’t give you enough water. Perhaps it was the pasta. Perhaps…”
“Am I dying? Will I make it home? I am not ready to die.”
Zach and I did our best to calm him. But, inside my head, I cursed Duchenne. Seriously. Cursed. It. I’ve said it before, and I’ll say it again. No kid should EVER think about dying. No kid should ever worry about death. I realize Duchenne has unique challenges and the odds are completely stacked against us. But, dammit, make it stop already!
“No, Bud. You are not dying. You have a whole life in front of you. You just fainted, but you’re doing much better now. You’ll be fine.”
“Yeah, you’ll be fine, Alex,” Zach added with growing confidence that everything was okay.
Alex calmed down and breathed deep. His skin color returned to normal. He began to feel like himself again. He also connected the dots. He knew his fainting was likely related to Duchenne. He calmly and deliberately shared his heart. You could practically feel his emotional pain.
“Dad, I am SO tired of this disease. I just want it to go away. I just want it to be over.”
“I know, Bud. I know. Me, too.”
What more can you say?
Alex’s doctors always put on a happy face and spin to the positive. They always do their best to keep spirits up. They must, understandably. But, if you look close, you can see what they see. It’s not pretty. Those in the advanced years of Duchenne will offer support. But they, too, know the road ahead only gets rockier. They experience it every day. Although therapies and wisdoms prepare you for hardships to come, NOTHING prepares you for the hardships that do. Having been through a few of them, all I can say is those moments are best handled through your heart and with a deep sigh. With Duchenne, you take each day as it comes, however blunt, and do your best to keep moving forward. You learn to support one another and carry on with love in your heart because, in the end, that’s all that matters.
You can also find the good in all this. Because, even during Duchenne’s darker moments, life’s beauty rises visible and strengthening, if only for a short while. It’s these moments that keep me going along our journey. And last Saturday night, after this frightening episode, I witnessed perhaps one of the most tender scenes in Duchenne I have ever known. It went like this.
When I finally convinced Alex we really did need to pay our bill, he reluctantly lifted away from my side and let go of my hand. Alex then opened his hand towards his best friend.
“I know it’s probably weird, but will you hold my hand?” he asked. There, in the cold night on the Skyline front sidewalk, Zach reached down and gripped Alex’s hand without hesitation.
"You bet," Zach replied.
“Thanks,” Alex said from his heart. Zach simply nodded as good friends do.
I marveled at the scene, choked back some tears, and then walked inside smiling.
As I paid our bill at the cashier, I looked through the window to check on the young men. Zach stood by his friend as Alex leaned close. I appreciated the support. But, when Zach placed his other hand around Alex’s shoulder, well...it filled my heart.
This journey with Duchenne is and will be difficult. The road is and will be rocky. But, with support from friends like Zach, it’s bearable...
…and beautiful. when you need it most.
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