Yet, he persisted.
As I have often shared in this blog, life with Duchenne is hard. It’s ruthless and unforgiving. It’s isolating and constricting to everyone, especially Alex who has been confined to his bed going on eight months now. Such is life, though, and we have learned to make the most of it with conversations, movies, games, and visits from family and friends. But, Duchenne never stops and never lets up. It cares nothing of your feelings or your discomfort. The physical and mental toll wears on you constantly, and teases you when you see others enjoying life as you wish you could. One such life joy nearly we thought taken from Alex was the latest Star Wars movie – The Rise of Skywalker.
For those unaware, Alex is a huge Star Wars fan. Let me put that another way…ALEX IS A HUGE STAR WARS FAN! I’m not kidding! He has watched every Star Wars movie at least a gazillion times. He has played every Star Wars video game until his PlayStation console either begs for mercy or begins smoking. Dressed in full costume, he has attended three Star Wars Celebrations (two in Orlando and one in Chicago) where he has talked with and fist-bumped celebrities like Mark Hamill, Billy Dee Williams, Warwick Davis, Anthony Daniels, Ray Park, Ian McDiarmid, Hayden Christensen, Peter Mayhew, and more. Practically every day, Alex watches YouTubers chat and debate about everything Star Wars and often corresponds with them via social media about a Star Wars topic or two. More than once, Alex has watched, in order, the entire sequence of Star Wars movies from the earliest Clone Wars through Star Wars Episode 8 - The Last Jedi. Did I say he was a huge fan?
So, when Star Wars Episode 9 – The Rise of Skywalker - released in late December, Alex lay in bed frustrated he couldn’t see the movie in theaters. He also refused to wait until the DVD came out later this year to see it.
Something had to give.
“Dad, contact Make-a-Wish Foundation!” He gave as an alternative. “Maybe they can help. You know we have never used our wish.”
I explained to Alex, age 20, he had aged out of the Foundation parameters for children under 18 years of age.
“Dad, what if you wrote a letter to the Bob Iger, the CEO of Disney (who owns the Stars Wars saga), and explain that I can’t get to the theater,” Alex encouraged. “Tell him I am a huge fan!”
I nodded agreement to his cute fandom, but silently considered the improbability of success. Yah, right. Why would such an important person help us?
“Ask Mr. Iger to send me a copy of the movie so that I can watch it in my room! Tell him my back hurts too much to see it in the theater. Tell him…”
As if he could see my glossy gaze of inaction, Alex pushed with determination and took matters into his own hands at far as he could.
“Look,” he said while balancing his cell phone on his chin and awkwardly pivoting his phone so I could see the screen (and his research). “Here is his address. I found it online. Just write the letter and send it! Please!”
Although his online research certainly impressed me, I nonetheless contemplated how not to burst his bubble, I knew he needed something to hold onto while lying in bed. I knew he needed some level of hope in the face of Duchenne to sustain his enthusiasm, his smile, and his joy. He needed something. We all did.
But, those odds…
At a minimum, I then entertained his request, looked at his phone, and read aloud the PO Box number to show him I understood his desire. I chuckled that a fan letter, no matter how true the fan, sent to a PO Box address at Disney would actually be read by anyone of importance, let alone the CEO! Deep down, I thought there is no chance of us seeing the movie before the DVD release. It was just a fact of life, I thought. I considered how to redirect his expectations.
Yet, he persisted. He did because he knew he would see the movie…and soon!
Lo and behold, THAT soon was last Saturday….and, to this day, my mind still cannot wrap around how it all happened so fast! I so wish you could have seen the smile on Alex’s face when he received the movie…from Darth Vader himself! It was magical!
Call it incredible coincidence, divine intervention, or any other such life explanation that works (hint…few do), but the culmination of events into last weekend absolutely blew me away! Heck it blew us ALL away, expect perhaps Alex, who persisted because he just knew! It was one of those life happenings that leave you speechless and shaking your head in wonder.
Consider how it all came together…and the odds of it happening as it did.
You see, beginning in early December, two friends (who don’t know each other and live states apart) reached out to us without knowing of the other’s actions.
Vicki, an incredibly kind and loving woman who has treated Alex like one of her own sons for years, met the Star Wars 501st Legion at a holiday charity event in Cincinnati (the 501st Legion is an organization of adults living out their Star Wars dreams through elaborate character cosplay). She introduced herself and asked them if they would consider visiting Alex in our home. They told her to submit an official request to their organization because they are in high demand and receive many requests throughout the year, many dates already set. She did and, in a matter of days, they accepted the opportunity to visit Alex. They told her some available dates and she forwarded the dates to us for consideration and planning. After thanking her profusely, we selected a Saturday in early January. This past Saturday, in fact.
The odds get crazier.
Concurrently, a longtime friend of mine from high school, nicknamed Schotty, sent me a message via Facebook Messenger. Schotty has a heart of gold and is one of those guys who would give you the shirt off his back, if you needed. He hadn’t heard much from us following Alex’s recent hospitalization and was concerned if everything was okay. His message read as follows…
“Just checking in on you pal, haven’t seen any updates and I’ve been holding you in my heart as a father…I just want you to know I say prayers for all of you and think about you weekly. Hoping you are holding up my man…”
I replied my thanks for his checking in on us and for his prayers. I updated him on our current state and then innocently added that Alex is bummed he won’t be able to see the new Star Wars movie because of his back pain. For perspective, I added that even Star Wars cannot get him out of bed. I thanked him for thinking of us and wished him well.
Later that day, Schotty replied…
“…let me see what I can do…”
I wasn’t quite sure what he meant, but over several messages, Schotty explained how he knew several movie directors in Hollywood and that possibly…possibly…they could help. Schotty explained how he would pull out all the stops and favors to get Alex a DVD of The Rise of Skywalker. He added that if he could change but one moment in Alex’s life, where Alex could think of nothing but Star Wars and forget about Duchenne for a while, he would.
We were eternally grateful for his caring, but unsure whether Hollywood directors would take the time to consider a young man in Cincinnati, Ohio.
As Vicki, Kristy, and I texted back and forth about the 501st Legion’s surprise visit to Alex, Schotty updated he was still pushing to make things happen. Our fingers were crossed, but we held our excitement in check for fear of letdown. Still, we secretly considered the possibility of the two random events occurring together. Think of the odds if they did, we said to one another.
Then, THE DAY BEFORE the 501st Legion was set to visit our home, Schotty messaged me the following…
“In my possession is one copy of Star Wars! I’ll FedEx it to you for Saturday morning delivery. Enjoy with your boy!”
After I shared Schotty’s message, Kristy and I just looked at each other in amazement and heartfelt gratitude. Smiles crept across our faces and tears glossed over our eyes as we considered the chain of events and the caring of others. Was this really happening? Together? On the same day?
As we excitedly cleaned and prepared, decorating the house with anything and everything Star Wars, a FedEx truck pulled along curbside and we ran outside to greet the courier. Seeing our smiles, the friendly courier deduced the package he held and just electronically scanned was something special. When we explained to him what it was and how it all happened….independently and simultaneously, his arms dropped to his sides and his mouth opened wide in shock. Oh my God! That is incredible! His smile widened. You know, it’s deliveries like this that make my day! Thank you for sharing that. WOW!
We wished him well and then ran inside, excited for the arrival of family and friends, the 501st Legion, and the smile that only Star Wars could put upon Alex’s face.
Needless to say, the day did not disappoint! Everyone shared in the excitement and the excitement brought by two caring friends, Vicki and Schotty! Everyone was happy for Alex, including Darth Vader who later told me he couldn’t stop smiling beneath his mask as he handed Alex a Director’s Guild copy of the Star Wars movie.
Later that night, after the last of the 501st Legion had long departed, the dishes were washed and put away, and our home had settled from the day’s excitement, Alex, Kaitlyn, John, Vicki, Zach, Kristy, and I settled into our seats in Alex’s small room. We each held bowls of popcorn on our laps and beverages of choice in our hand. We dimmed the lights, inserted the DVD into Alex’s PlayStation, and sat back. We then pushed play.
…and we forgot about Duchenne for a while!
Mission accomplished, Vicki and Schotty! Thank you from the bottom of our hearts! Your kindness is appreciated more than you may ever know.
See, Dad. I told you!