What if she doesn’t show up? His mind raced with worry. What if I say all the wrong things? He practiced lines he had rehearsed in his head. He repeatedly scanned the sidewalks for the girl’s arrival. He took many deep breaths to calm himself. The wait was agonizing, yet hopeful.
Soon, the distant cheers grew louder and he realized the football game had started. Am I at the wrong corner? He wondered. Did she have a change of plans, or a change of heart? He paced about in small circles, nervously wiping his sweaty palms across his pants, while the streetlight above lazily changed from green to yellow to red, and then quietly back to green. Each minute felt like hours. Each light change reminded him of his solitude. Each distant cheer added to his isolation.
They weren’t a couple, by any means. Far from it. Although he had a crush on her since the Fourth grade, the game would be their first date. He wondered if he should hold her hand when they walked to the stadium. He fumbled through his pockets to make sure he had enough money to buy her a Coke at the game.
Before long, he heard the marching band begin its halftime performance, and the boy realized their meeting would probably not happen like he had hoped. It was getting late. He realized the girl, for whatever reason, would not be meeting him at the corner. Perhaps she thought we were to meet at the game, he thought. He sighed with resignation, and then made his way to the stadium alone, yet still hopeful.
The boy entered the loud stadium and walked towards a group of friends and other restless teenagers gathered along a low fence line surrounding the end zone. Where have you been? His friends shouted. The game is almost over, they laughed. Then, they pointed.
The boy followed their direction and saw the girl. She stood smiling and laughing, seemingly lost in conversation with another boy as if they were an established couple.
The boy’s heart broke.
I share this story with Alex, every now and then, to help him understand life's disappointments, especially when it comes to girls. I tell him it happens to everyone. I tell him you gotta roll with the punches and keep moving forward no matter how hard it can be. I tell him disappointment is not a reflection on him, it’s just the way things happen sometimes. I tell him that someday he’ll find the one. It just takes time. He’ll shrug and nod understanding. He’ll smile and try his best to move on. But, you feel his pain. You feel his loneliness. You also feel his frustrations of living with Duchenne.
I share this story because he had garnered the nerve one day to ask a girl to visit him at home and play some video games. She agreed, and they set a date a couple weeks in advance. As you can imagine, Alex counted the days to until her arrival. He planned out what video games they would play or movies they would possibly watch. He told me what shirt he wanted to wear.
The day of the meeting, he asked me to dress and groom him, and get him ready. He asked me to hoist him into his wheelchair hours earlier than needed just in case of her early arrival. He made his way downstairs and rolled around the house waiting for the visit to begin. He stared out the windows and, more than once, swore he saw her car driving up the street. After a while, weaves of wheelchair pacing had grooved into the carpets and the planned meeting time had long since passed. Still, he waited…hopeful.
A couple hours later, the young woman texted that she couldn’t make it, and apologized for not coming to see him. He had been all dressed up and ready to go. He debated if he should go back upstairs alone. Seeing his disappointment, I took him to the movies and then IHOP for some late-night pancakes.
There, Alex shared his heart. “I wonder if I’ll ever have a girlfriend. I mean…I can’t walk, YOU have to drive me everywhere, and YOU have to feed me every bite when I eat. I can’t do anything by myself! I can’t go anywhere by myself! If someone ever dates me, they date you, too!” He looked away, as if searching for something, anything to prove he was a teenager like anyone else.
He turned back to me and opened his mouth for another bite of pancakes. I obliged, and then wiped syrup from his lips.
As any parent, you give support as best you can. You tell him not to worry. You tell him it’s not just him. You tell him everyone goes through tough times and that many experience disappointment or heartbreak. But, as a Duchenne parent, these moments tear you apart. Sure, teen angst is common throughout anyone’s adolescence. Sure, we’ve all been there. But, with Duchenne, you hear him. You feel him. You know what he is thinking. He wants to be like everyone else, in a world where the odds of having Duchenne are roughly 1 in 3500. Despite your words of understanding and comfort, his frustrations of immobility and complete dependence for everything are real. You understand and let him know that you do.
And, it’s not just with girls. Feelings of social isolation happen with his guy friends, as well.
For example, Alex recently invited six young men to join him for a movie and a sleepover to celebrate his 19th birthday. He had hopes of laughter, pizza, hoots and hollers late into the night, if not morning. He imagined company and conversations with people other than Mom and Dad for a change. Nights with friends make him feel a part of it all. He joked that he hoped his friends wouldn’t cancel like the girl he had invited a couple of weeks before.
Then, unfortunately, they did. One by one.
Days leading up to the party, two friends canceled because of conflicting Spring vacation plans. The night before the party, another canceled because of work commitments. Then, while grooving his wheelchair in circles and waiting downstairs for the remaining guests to arrive, two more canceled for last-minute college or family obligations. The sixth, and last, invitee then texted that he couldn’t make it because he didn’t have a car and couldn’t get a ride.
Alex looked at me and simply shook his head. “I’m cursed,” he said.
Just like that…birthday plans with six friends…dashed and nearly destroyed. We had to do something. We called the sixth friend and told him we would pick him up so Alex would have at least one friend at the movies with him other than Dad. After the movie (Ready Player One), we picked up another friend after his work shift had ended. Determined to enjoy his party, Alex and his two friends stayed up most of the night celebrating another year.
Sigh. Crisis averted.
What many may not realize is the magnitude of visits to a kid with Duchenne. Any visit, anytime, anywhere, is treasured. Any visit, anytime, anywhere, is revered. If a visit is possible, our family makes time for it to happen. We do because, with Duchenne, as your son’s world shrinks, his friends’ lives grow exponentially. As he becomes increasingly dependent for everything, his friends become increasingly independent and launch into active lives. You can’t blame them. In fact, you cheer for them, because they have become like family over the years and their success is encouraged! Still, for the kid with Duchenne, the separation in young adulthoods becomes too swift. It happens too fast. The gap, sadly, grows wider…and expands every day.
Family can fill the gap, and kind neighbors as well, but it’s just not the same as friends. We wish we could do more.
So, as you can tell, we are entering a transitional period in Alex’s life. As he approaches high school graduation, many of his friends are moving on to their next adventure. Some are heading to college. Some are beginning new jobs. Either way, they are moving onward as well they should.
But, unfortunately for Alex, the friend-market is thinning and will undoubtedly become more so in the coming years. He may meet new friends when he is out and about, but that will become harder and harder as his Duchenne advances and he spends most of his time at home with Mom and Dad. He’ll also chuckle and shake his head as our aging heads inevitably tilt back asleep while watching a movie with him. When that happens, he sometimes calls friends and family in other states to stay connected at any hour of the night.
God love him.
It’s times like these that tap your heart and encourage you to continually tap his. Despite his restrictions with Duchenne, you encourage him that what matters most is his spirit for life and his belief in himself. You tell him that you love him and always will. You encourage that what matters is happiness and love for one another. You pump him with self-confidence to face the difficult days, because you know there will be many. You do everything you can to keep his chin up, despite his declining physical abilities. You laugh with him as you watch his favorite sit-com or YouTube video. You take him to a park or a bookstore or a Reds game and hope for a win. You do anything of the sort because you want to give him the best life he can have. You do because YOU see the gift he brings to the world, and you hope others see it as well.
You do because he needs the connection,
…and deserves as much.
Over the pancakes at IHOP, I shared my story again with him about the boy waiting at the corner. I told him that although the girl did not meet him at the corner, she is a good friend to this day. I reinforced that although friends may come and go, good friends will always be there for him in the years to come.
He smiles, shakes his head, and says…
”Thanks, Dad. But, do you realize how many times you've told me that story!”