The rhythmic sound of Alex’s Bi-PAP filled our Chicago hotel room last week and my heart. The sound was not only peaceful and soothing, but life-sustaining as it pushed air deep into his lungs to help him rest peacefully and give him strength for another day. The sound was not only calming and reassuring, but grounding as it blended with the metallic clang of elevator doors outside our room, random honks of aggressive drivers beyond our window, and distant knocks in the hallway from busy housekeepers. The sound was not only real and vital in our battle against Duchenne Muscular Dystrophy, but also served as a steady reminder of our son’s dreams, our responsibility to help him live those dreams, and the awareness that we have today to make those dreams possible.
Still, something didn’t feel right about the sound last week. The Bi-PAP’s rhythm seemed unsettling and unnerving. It seemed foreboding, like an ominous warning from somewhere dark and sinister. For some reason, the equipment’s mechanical, pulsing sound made it seem like we had been transported to a galaxy far far away and that Darth Vader himself stood nearby, breathing hard and certain.
KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR
Or, more likely, Star Wars had taken over my conscience! It wouldn’t be surprising.
You see, Alex and I attended Star Wars Celebration 2019 in Chicago last week, and the five-day event was nothing short of mind-blowing! It was Star Wars, Star Wars, Star Wars…everywhere! Seriously EVERYWHERE! Signs, posters, and exhibits featuring anything Star Wars filled the cavernous McCormick Place Convention Center. Star Wars celebrities, personalities, and hosts occupied stages, signed autographs, and posed for pictures with enthusiastic fans. Unique galaxy props, toys, and clothing for sale tempted you at every turn. Superfans hosted panels of Star Wars trivia, Star Wars collectibles, and how to build droids, to name a few. Elaborately costumed fans roamed the convention space and willingly posed with anyone, like one big Star Wars family! Honestly, with the tens of thousands of fans in costume every day, many carrying lightsabers, and most wearing smiles, this event would leave you in awe of humanity!
We met people from all walks of life, all parts of the planet, and all parts of the galaxy. We met fans dressed as Obi-Wan Kenobi, Darth Vader, and Luke Skywalker. We saw fans dressed as Anakin Skywalker, Princess Leah, and even George Lucas! We met creatures from planets and galaxies too many to name. We spoke with celebrities and hosts, who made Alex feel a part of it all. And, as typical with Alex, we befriended parking attendants, janitors, ticket scanners, security personnel, and more. It wouldn’t surprise me if Alex was now pen-pals with the BBQ sandwich cart vendor, who we purchased lunch from every day.
“Hello again, Kylo! Want the usual pulled pork and a water?”
It’s human (and alien) connections like these that are most appreciated and fill the heart!
For example, following the opening panel featuring Star Wars - Episode IX – The Rise of Skywalker, a burly security guard noticed our struggle in crowd gridlock. He quickly came to our assistance, told us not to worry, and VOCALLY parted the crowd for Alex’s wheelchair to follow. After expertly parting the masses like Moses and the Red Sea, the kind and surprisingly gentle man bowed and offered a fist bump as if he had just helped the leader of the Resistance!
At another panel, a blind man sitting next to us overheard Alex saying the overhead lights caused him dizziness and we should leave. The man tapped me on my arm, removed his hat, and then kindly offered it to Alex so he could shield his eyes. Dizziness averted! Panel enjoyed! Friendship established! Afterward, we returned the hat and chatted with the friendly man from California who loves Star Wars as much as Alex. His young daughter dressed as Rey stood alongside and shared her excitement as well!
In the parking garage, a security guard on a smoke break saw our time-consuming efforts of releasing tie-downs, exiting our van, and then repeatedly lifting and repositioning Alex for comfort in his wheelchair. The grizzled security guard dropped his cigarette, swiveled his foot on it, and then nodded us over while cautiously looking around. The helpful man then ushered us through some doors, into a security warehouse, and then through a “secret” door that opened DIRECTLY onto the Celebration main floor! This awesome act of kindness allowed us to avoid thousands of fans at entry checkpoints and helped us enter the Celebration without delay.
“I figured you needed every advantage you can get,” the kind man said with a smile and a wink. “Come back here every day, and I’ll help you out!”
We thanked him profusely as he added, “Enjoy your day, Kylo!”
(Side note: it’s these random acts of kindness that make living with this hard disease so bearable. EVERY time, it puts a smile on your face and warmth in your heart that people care!)
Yet, despite these wonderful people, Star Wars Celebration 2019 also had a dark side through no fault of its own. Because of the sheer volume of fans, many overlooked Alex as if he was invisible. I realize this may be hard for some to understand because Alex is so social, but when you are sitting in a wheelchair you are generally below line-of-sight and often not seen. Most people looked forward and ahead to see where they are going in the mass of fans and seldom looked down to a kid so desperate to share his passion for Star Wars. On top of that, most people were focused on getting to the next panel, finding that unique collectible, or searching for autographs and photo-ops. Few took notice of a reclined Kylo Ren seeking human connection while trying to navigate his way.
“Hey, man! I like your costume!” Alex would say sideways from his reclined position. After no response, he would try again. “Do you like my costume?” He waited politely for a few seconds but watched as they walked away and engaged enthusiastically with someone else.
“Hey bro, did you see the Episode IX panel?” He prompted others without success. “It was awesome, don’t you think?” He continued in hopes they would hear him though didn’t. Silence usually followed his attempts, along with the sight of another costumed backside walking away.
“Do they not hear me, Dad?” He would ask. “Don’t they see me?” He would plead. “Don’t they know I’m a fan, too?” Despite his disappointment, he rolled onward towards another costumed fan, hopeful for connection.
This isn’t to say people were rude. No, far from it. Most were just oblivious to Alex’s desire to share his passion and to communicate with someone other than Dad. It’s a hard thing for others to realize when they don’t look down in a mass of people. It’s a harder thing to explain to a kid who craves human connection. Most times, people only noticed Alex when they nearly collided with his wheelchair, apologized, and then moved on. Other times, the noise of the Celebration was simply too loud for his soft voice to overcome from a reclined position. Some absently stared as they passed or didn’t know what to say to a young man leaning back and sipping portable ventilation. The downside of these missed human connections was that it unmasked and compounded Alex’s severe back pain.
“Dad, my back really hurts again! Can you lift me back?” He would say while we weaved aimlessly through the crowd. We saw an open spot along a wall and rolled towards it. We then performed our lift-back acrobatics (again), readjusted the layers of his costume fabric, and repositioned his red lightsaber across his chest. Before we moved on, we made sure his glove-covered hand had a solid grip on his lightsaber so it would not fall off his lap, though did often.
As much as the Celebration was fun, this trip was a taxing. The drive to and from Chicago was hard. The multiple tie-downs in our accessible van were hard. The transfers in and out of bed were hard. Moving through the parking garage, Celebration space, and masses of people was hard. Throw in rush-hour commuters, notorious and unavoidable Chicago potholes, and a blizzard with three inches of slushy wet snow, and the entire trip was downright exhausting for both of us, physically and mentally.
Through it all, Alex sat in a constant state of discomfort. He adjusted and reclined his wheelchair often and needed repositioned frequently. He took prescribed pain meds to help manage his pain and counted the hours until he could take some more. He slept long hours and skipped panels he had wanted to see so he could rest. He fell asleep during our daily commute and sometimes during panels where talk droned (ahem, Droid Builders). He asked to leave early each day so he could rest in the hotel bed. He ate dinner in bed most nights. He forced himself awake most mornings and pushed himself onward each day because he wanted to celebrate his passion – Star Wars – with hopes of sharing his passion with others.
Every day, Alex dressed as Kylo Ren. Every day, the young man wore a black long-sleeved pleated shirt, a long black flowing robe, a loose black full-bodied hood over his head, and a black leather glove on his left hand. He carried a cross-barred red lightsaber across his chest and rolled onward through the crowd despite his discomfort and pain. He offered a smile and a nod to every person who looked down and engaged in conversation with those few who took the time. Every day, he clenched his hand in hopes of a fist bump with whoever noticed.
He is the toughest, most determined, kid I know.
We left the five-day Celebration a day earlier than planned. We did because Alex’s body was simply spent and he wanted to conserve his energy for the long drive home. Despite his exhaustion, we had a great time! We lived everything Star Wars, enjoyed our time together as father and son, and filled our days with as much as Duchenne and his ailing back would allow.
Today, as I reflect on our third Star Wars Celebration, I cannot help but smile with the memory. I do not only for the fun we had or for the adventure we shared in a galaxy far far away. I do not only for the memories of standing against the wall enjoying delicious BBQ sandwiches, teasing him about his desire to take a picture with a scantily clad Princess Leah, or seeing his satisfaction one night with Chicago-style deep dish pizza. I do not only for meeting kind strangers who didn’t need to help us but did in the most memorable and simplest of ways. I do not only for those who took the time to chat with Kylo and help him forget about his back pain, if only for a short while. I do not only because of the push of air that will now forever sound like Vader.
No...I smile because of Kylo, and his determination to make the best of a tough situation, live life to the fullest, and fulfill a dream despite the constant headwinds of living with Duchenne.
KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR
Until next time, Chicago!
Still, something didn’t feel right about the sound last week. The Bi-PAP’s rhythm seemed unsettling and unnerving. It seemed foreboding, like an ominous warning from somewhere dark and sinister. For some reason, the equipment’s mechanical, pulsing sound made it seem like we had been transported to a galaxy far far away and that Darth Vader himself stood nearby, breathing hard and certain.
KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR
Or, more likely, Star Wars had taken over my conscience! It wouldn’t be surprising.
You see, Alex and I attended Star Wars Celebration 2019 in Chicago last week, and the five-day event was nothing short of mind-blowing! It was Star Wars, Star Wars, Star Wars…everywhere! Seriously EVERYWHERE! Signs, posters, and exhibits featuring anything Star Wars filled the cavernous McCormick Place Convention Center. Star Wars celebrities, personalities, and hosts occupied stages, signed autographs, and posed for pictures with enthusiastic fans. Unique galaxy props, toys, and clothing for sale tempted you at every turn. Superfans hosted panels of Star Wars trivia, Star Wars collectibles, and how to build droids, to name a few. Elaborately costumed fans roamed the convention space and willingly posed with anyone, like one big Star Wars family! Honestly, with the tens of thousands of fans in costume every day, many carrying lightsabers, and most wearing smiles, this event would leave you in awe of humanity!
We met people from all walks of life, all parts of the planet, and all parts of the galaxy. We met fans dressed as Obi-Wan Kenobi, Darth Vader, and Luke Skywalker. We saw fans dressed as Anakin Skywalker, Princess Leah, and even George Lucas! We met creatures from planets and galaxies too many to name. We spoke with celebrities and hosts, who made Alex feel a part of it all. And, as typical with Alex, we befriended parking attendants, janitors, ticket scanners, security personnel, and more. It wouldn’t surprise me if Alex was now pen-pals with the BBQ sandwich cart vendor, who we purchased lunch from every day.
“Hello again, Kylo! Want the usual pulled pork and a water?”
It’s human (and alien) connections like these that are most appreciated and fill the heart!
For example, following the opening panel featuring Star Wars - Episode IX – The Rise of Skywalker, a burly security guard noticed our struggle in crowd gridlock. He quickly came to our assistance, told us not to worry, and VOCALLY parted the crowd for Alex’s wheelchair to follow. After expertly parting the masses like Moses and the Red Sea, the kind and surprisingly gentle man bowed and offered a fist bump as if he had just helped the leader of the Resistance!
At another panel, a blind man sitting next to us overheard Alex saying the overhead lights caused him dizziness and we should leave. The man tapped me on my arm, removed his hat, and then kindly offered it to Alex so he could shield his eyes. Dizziness averted! Panel enjoyed! Friendship established! Afterward, we returned the hat and chatted with the friendly man from California who loves Star Wars as much as Alex. His young daughter dressed as Rey stood alongside and shared her excitement as well!
In the parking garage, a security guard on a smoke break saw our time-consuming efforts of releasing tie-downs, exiting our van, and then repeatedly lifting and repositioning Alex for comfort in his wheelchair. The grizzled security guard dropped his cigarette, swiveled his foot on it, and then nodded us over while cautiously looking around. The helpful man then ushered us through some doors, into a security warehouse, and then through a “secret” door that opened DIRECTLY onto the Celebration main floor! This awesome act of kindness allowed us to avoid thousands of fans at entry checkpoints and helped us enter the Celebration without delay.
“I figured you needed every advantage you can get,” the kind man said with a smile and a wink. “Come back here every day, and I’ll help you out!”
We thanked him profusely as he added, “Enjoy your day, Kylo!”
(Side note: it’s these random acts of kindness that make living with this hard disease so bearable. EVERY time, it puts a smile on your face and warmth in your heart that people care!)
Yet, despite these wonderful people, Star Wars Celebration 2019 also had a dark side through no fault of its own. Because of the sheer volume of fans, many overlooked Alex as if he was invisible. I realize this may be hard for some to understand because Alex is so social, but when you are sitting in a wheelchair you are generally below line-of-sight and often not seen. Most people looked forward and ahead to see where they are going in the mass of fans and seldom looked down to a kid so desperate to share his passion for Star Wars. On top of that, most people were focused on getting to the next panel, finding that unique collectible, or searching for autographs and photo-ops. Few took notice of a reclined Kylo Ren seeking human connection while trying to navigate his way.
“Hey, man! I like your costume!” Alex would say sideways from his reclined position. After no response, he would try again. “Do you like my costume?” He waited politely for a few seconds but watched as they walked away and engaged enthusiastically with someone else.
“Hey bro, did you see the Episode IX panel?” He prompted others without success. “It was awesome, don’t you think?” He continued in hopes they would hear him though didn’t. Silence usually followed his attempts, along with the sight of another costumed backside walking away.
“Do they not hear me, Dad?” He would ask. “Don’t they see me?” He would plead. “Don’t they know I’m a fan, too?” Despite his disappointment, he rolled onward towards another costumed fan, hopeful for connection.
This isn’t to say people were rude. No, far from it. Most were just oblivious to Alex’s desire to share his passion and to communicate with someone other than Dad. It’s a hard thing for others to realize when they don’t look down in a mass of people. It’s a harder thing to explain to a kid who craves human connection. Most times, people only noticed Alex when they nearly collided with his wheelchair, apologized, and then moved on. Other times, the noise of the Celebration was simply too loud for his soft voice to overcome from a reclined position. Some absently stared as they passed or didn’t know what to say to a young man leaning back and sipping portable ventilation. The downside of these missed human connections was that it unmasked and compounded Alex’s severe back pain.
“Dad, my back really hurts again! Can you lift me back?” He would say while we weaved aimlessly through the crowd. We saw an open spot along a wall and rolled towards it. We then performed our lift-back acrobatics (again), readjusted the layers of his costume fabric, and repositioned his red lightsaber across his chest. Before we moved on, we made sure his glove-covered hand had a solid grip on his lightsaber so it would not fall off his lap, though did often.
As much as the Celebration was fun, this trip was a taxing. The drive to and from Chicago was hard. The multiple tie-downs in our accessible van were hard. The transfers in and out of bed were hard. Moving through the parking garage, Celebration space, and masses of people was hard. Throw in rush-hour commuters, notorious and unavoidable Chicago potholes, and a blizzard with three inches of slushy wet snow, and the entire trip was downright exhausting for both of us, physically and mentally.
Through it all, Alex sat in a constant state of discomfort. He adjusted and reclined his wheelchair often and needed repositioned frequently. He took prescribed pain meds to help manage his pain and counted the hours until he could take some more. He slept long hours and skipped panels he had wanted to see so he could rest. He fell asleep during our daily commute and sometimes during panels where talk droned (ahem, Droid Builders). He asked to leave early each day so he could rest in the hotel bed. He ate dinner in bed most nights. He forced himself awake most mornings and pushed himself onward each day because he wanted to celebrate his passion – Star Wars – with hopes of sharing his passion with others.
Every day, Alex dressed as Kylo Ren. Every day, the young man wore a black long-sleeved pleated shirt, a long black flowing robe, a loose black full-bodied hood over his head, and a black leather glove on his left hand. He carried a cross-barred red lightsaber across his chest and rolled onward through the crowd despite his discomfort and pain. He offered a smile and a nod to every person who looked down and engaged in conversation with those few who took the time. Every day, he clenched his hand in hopes of a fist bump with whoever noticed.
He is the toughest, most determined, kid I know.
We left the five-day Celebration a day earlier than planned. We did because Alex’s body was simply spent and he wanted to conserve his energy for the long drive home. Despite his exhaustion, we had a great time! We lived everything Star Wars, enjoyed our time together as father and son, and filled our days with as much as Duchenne and his ailing back would allow.
Today, as I reflect on our third Star Wars Celebration, I cannot help but smile with the memory. I do not only for the fun we had or for the adventure we shared in a galaxy far far away. I do not only for the memories of standing against the wall enjoying delicious BBQ sandwiches, teasing him about his desire to take a picture with a scantily clad Princess Leah, or seeing his satisfaction one night with Chicago-style deep dish pizza. I do not only for meeting kind strangers who didn’t need to help us but did in the most memorable and simplest of ways. I do not only for those who took the time to chat with Kylo and help him forget about his back pain, if only for a short while. I do not only because of the push of air that will now forever sound like Vader.
No...I smile because of Kylo, and his determination to make the best of a tough situation, live life to the fullest, and fulfill a dream despite the constant headwinds of living with Duchenne.
KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR
Until next time, Chicago!
May the force be with you!
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