The opportunity for Alex to realize one of his dreams came last week when the 2017 Star Wars Celebration returned to Orlando, Florida after a five-year hiatus. The date had been marked on Alex’s calendar from the moment it was announced over a year ago. He counted down the days until our road trip began. He ordered his costume. We bought him a blue lightsaber.
You see, Alex not only loves Star Wars. He LIVES Star Wars! He knows every character from every scene from every episode. He practically knows every line from any scene. He plays every Star Wars video game. He has watched every season and every episode of Star Wars – Clone Wars and Star Wars - Rebels. He reads Star Wars encyclopedias, books, and comics. He collects Star Wars Lego characters. He watches YouTube videos of the Jedi Council and other Star Wars enthusiasts…repeatedly and then some more. He keeps a Darth Vader journal.
It’s truly magical to see his love for Star Wars, and something to behold when you consider his life with Duchenne Muscular Dystrophy. A disease that steals so much from him cannot take away his love for Star Wars. So, we made it a priority that Alex would be in Orlando this year because nothing, not even Duchenne, would stop him from attending. Even the return of his pesky chest congestion and mucus-filled cough was no match for his determination to drive nearly 2,000 miles for four days of Star Wars and nothing but Star Wars.
The morning of its arrival was something special. Alex awoke with a smile on his face and urgency in his voice. We dressed him in layers of fabric, sashes, and belts per his Star Wars specifications so he could arrive as Obi Won Kenobi. He carried the blue plastic lightsaber across his chest as his powerchair bounced along the sidewalk. His wheelchair slowly parted the sea of Star Wars fanatics moving towards the entrance (note: more than 70,000 fans attended the four-day event).
Inside, the 2017 Celebration year did not disappoint. The crowd was amazing and an abundance of lightsabers waved at every opportunity. Kathleen Kennedy, the president of Lucas Films, kicked off the four days by introducing George Lucas, the creator of Star Wars, who explained his passion for bringing Star Wars to life. Warwick Davis (Wicket, the Ewok) hosted the event as Mark Hamill (Luke Skywalker), Harrison Ford (Han Solo), Anthony Daniels (C3PO), Peter Mayhew (Chewbacca), Ian McDiarmid (Emperor Palpatine) Hayden Christensen (Anakin Skywalker), Daisy Ridley (Rey), and John Boyega (Finn) appeared live to talk Star Wars. Samuel Jackson (Mace Windu) and Liam Neeson (Qui-Gon Jinn) joined via satellite. Carrie Fisher’s daughter gave a moving tribute to her late mother. The great composer and conductor, John Williams, led his incredible orchestra through several Star Wars pieces including the familiar introductory theme.
DUN DUN DUN DUNNNNNNNNNNNN DUN
DUN DUN DUN DUNNNNNNN DUN
(admit it, you just hummed along)
During the Celebration, we watched in awe as Rian Johnson (Director of the upcoming Star Wars movie, The Last Jedi) introduced a clip, and Dave Filoni (Director of Star Wars - Clone Wars and Star Wars Rebels) premiered an entire episode of Rebels Season Four. Over the four days, we enjoyed panels from Mark Hamill, Anthony Daniels, Ray Park (Darth Maul), Ian McDiarmid, Warwick Davis, and Billy D. Williams (Lando Callrissian). We admired the attention to detail from fully-adorned fans parading across stage in the Star Wars Cosplay Competition.
The force was with us.
Yet, the Celebration exhausted Alex, as the daily grind of Duchenne took its toll. Each day, he endured nearly 15 hours sitting in his power wheelchair, fighting through oblivious crowds, and being repositioned often for comfort. Even in our accessible hotel room, Duchenne reared its annoying head as our Hoyer Lift could not be positioned with its legs under the bed. This forced us to place the lift at a corner, lower him with his feet on a chair, and then pull him up to the pillows. We performed these acrobatics every morning and night. When we brought the issue up to the hotel management, they looked at us like we were from a galaxy far far away.
Sigh. Another day with Duchenne. Just deal with it as it comes.
Moreover, Duchenne’s reach extended farther and in a manner not entirely fair. This year, the Celebration set up a wristband policy to attend the highly-sought panel discussions with limited seating. As you can expect, thousands of fans camped overnight in line waiting for a wristband. They brought pillows, sleeping bags, and ordered pizzas. They got little sleep, and Star Wars celebrities did their best to entertain the fans and keep them going through the night.
Because of Duchenne, Alex could not camp overnight and, similarly, I could not leave him alone sleeping in the hotel. So, every day, all wristbands already had been distributed by the time we arrived in the morning. We were forced to wait, patiently, on standby every day to see a panel. It’s a difficult concept to explain while thousands of excited fans stream inside.
“It’s not fair, Dad! Don’t they know I’m a fan, too!”
When we raised the issue with the Celebration staff, they simply shrugged and said Sorry, that’s policy. Over time, however, the staff came to know us and understand our situation. They would then quietly usher us inside to the back of the assembly. Not the greatest of seats, but we took them. Fortunately, we never missed a panel we wanted to see.
While waiting, I could not help but consider the differences of Duchenne since our last Celebration in 2012. The changes were significant. As a then 13-year old with Duchenne, Alex traveled in our minivan’s front seat, head high and proud. His wheelchair waited in the back, secured and empty until needed whenever we stopped for food, hotels, or simply to stretch. He flipped through Star Wars magazines and his character encyclopedia while I drove. I handed him a snack or drink whenever he wanted as we drove on down the highway listening to his teenage tunes. In hotels, I piggybacked him onto the bed, couch, and toilet. Alex could sit up to get dressed. At restaurants, he could hold a drink and feed himself.
Not so much anymore.
Today, as an 18-year old with Duchenne, Alex remained in his wheelchair throughout the entire 2,000-mile round trip, which his sore back just loved. He slumped frequently from the bounce of the road and we stopped often just to lift him back.
Because of Duchenne…
…He could not hold a book or read while riding in the minivan.
…He could not scratch his head or blow his nose (that darn cold), causing me to reach back while driving to help him perform these simple tasks.
…He could not hold a drink, causing me to reach back while driving to assist (with a straw).
…His cell phone frequently fell from his hands because he could not keep a grip (note: we drove many miles listening to his music as it continued to play from the minivan floor).
…His head pillow frequently fell while he slept due to the bounce of the road.
…He required help with every bite at every meal, every day and night.
…We needed a Hoyer Lift to transfer him into bed.
…He laid flat on the bed to get dressed.
…He could not use the hotel restroom.
…He used his cough assist to help clear his mucus-filled lungs after long days.
…He used his Bi-PAP every night so he could breathe and get a good night’s sleep.
I thought about future Celebrations in Orlando…
But, thankfully, Duchenne did not stop Alex from enjoying himself this year!
Per his usual, Alex talked with everyone he could find. We met fans from across the United States and all over the world (Singapore, Thailand, Peru, Germany, England, Brazil, Japan, Canada, and Mexico). Alex chatted with security personnel, police patrols, canine patrols, crowd control managers, maintenance staff, concessions workers, registration workers, ticket takers, wristband checkers, production operators, stage hands, and cameramen. Alex sought out costumed fans for pictures and, likewise, they took pictures of him in costume. He befriended the Celebration warm-up host, Mark Daniels, (who later ushered us into prime panel seating at a later panel). Alex was the fortunate subject of a selfie taken by Warwick Davis. In a crowd, Alex recognized and confidently approached Pablo Hidalgo, the Creative Executive for Lucas Films.
Who recognizes Creative Executives??
THAT should tell you the level of Alex’s fandom!
Yet, for me, the most touching part of the Celebration was Alex’s lightsaber. We had bought it at Target a couple weeks before we left. It’s simple, plastic, and blue, the kind that telescopes out when you use it. When you push a button, it pulsates a lovely groaning sound and lights up. Although awkward for him to hold, he carried and rested it across his chest every day. Though unlike many of the elaborate lightsabers we saw at the convention, Alex’s blue lightsaber meant the world to him and now me.
When I asked him why he carried it every day, his answer struck me deep and had me appreciating his determination to not let Duchenne hold him down nor keep him from realizing his dream. We should all take note.
“Because I can’t clap,” he answered with conviction. “I move the light saber so everyone knows I am having fun.”
Here was a kid who could not move his arms and barely wiggle his wrists, yet used the lightsaber to express himself. Here was a kid dressed as Obi Won Kenobi, determined to enjoy the day….and let others know it.
On the first day, during the Star Wars 40th Anniversary panel where the endless stream of stars came marching on stage and where John Williams conducted his orchestra, my heart filled with pride that Alex could experience his dream. I looked over to him and saw his eyes closed and head tilted back. I worried the long drive, crowds, and wheelchair-sitting wore on him. I worried that his chest congestion and breathing difficulties were taking a toll. I worried that fatigue and physical exhaustion had set. I feared the return of his dizziness.
“Hey, are you doing okay?” I asked with concern.
Alex opened his eyes and turned his head towards me. He wiggled his light saber and smiled with relaxed content.
“I’m just really happy.”