Perspective helps you to understand the world, your place within it, and your responsibility to others. It enables you to appreciate what you have and focus less on what you don’t. It assists you to breathe easier and deeper, while letting go of frustrations and anxieties that can bog you down. It teaches you to appreciate every moment, as you should and while you can.
Yet, perspective can be finicky. It can disappear as quickly as it’s found. It can hide as easily as it appears. It can leave you if you aren’t too careful. It can stay away if you take it for granted. When you have it, you know it. When you don’t have it, you don’t know it. But, often, to get it back, all you need is to open your eyes and see it...right there in front of you.
For this Duchenne Dad, such perspective returned to me a couple days ago at the Baseball Fantasy Camp for Kids hosted in partnership with the Cincinnati Reds. The fantasy camp is a non-profit organization that provides an opportunity for young baseball fans with special needs, like our son Alex, to enjoy a day on the field with Major League ballplayers. Currently, Baseball Fantasy Camp for Kids is established in twelve cities with Major League Baseball teams, with plans for more.
We have attended the Baseball Fantasy Camp for Kids for many years and every time it delivers better than ever. Previous camps have connected kids with Cincinnati Reds players Zach Cozart, Devin Mesoraco, Homer Bailey, Shin-Soo Choo, and Todd Frazier to name a few. This year, the kids interacted with Scooter Gennett, Scott Schebler, Michael Lorenzen, and Patrick Kevlehan, who collectively supported and encouraged all campers and their families. Considering that Scooter later hit a record four home runs in a game just hours after this year’s camp, suggests the camp’s positive effect, even on Major Leaguers.
It’s a memorable day!
Over the years, Alex has played catch with All-Stars, hit against Major League pitchers, and laughed with Cincinnati Reds owners, including Bob Castellini. Every year, Alex talks with staff from the Reds Community Fund, Urban Youth Academy, and Cincinnati Recreation Commission. He enjoys silent, but animated, conversations and shenanigans with mascots Mr. Redlegs, Rosie Red, and Gapper. He interacts with parents and families of kids with mental and physical disabilities. He scores autographs, selfies, and fist bumps from Reds players throughout the event. To top it off, he poses for a baseball card imprinted with his picture, personal stats, and interests.
Fantasy Baseball Camp for Kids and the Cincinnati Reds do it right by these kids, and we cannot be more appreciative! But, what they may not realize it how far their influence reaches.
For me, the day brings needed perspective to our life with Duchenne. Although Kristy and I do our best to manage the beast, sometimes our perspective slips away within the daily grind of caregiving, be it turning, lifting, dressing, feeding, cleaning, wiping, washing, hoisting, listening, supporting, explaining, comforting…I could go on. Sometimes we lose sight of what we are doing as we swallow our frustration with Duchenne’s unstoppable progression. Sometimes we lose perspective of what we have when we see vitality…at the park, on the ball field, on Facebook, or wherever…and consider the life we thought we’d lead before Duchenne introduced itself. Sometimes, Duchenne simply gets the best of us.
That’s why a day supporting kids with a range of disabilities, some severe but all very real, reminds us where we’ve been, where we are, and where we are going. More importantly, it reminds us of life, and how to live.
For this reason, I cherish the Baseball Fantasy Camp for Kids. I smile when Alex’s best friend, Zach, serves as Alex’s Buddy and plays catch, fields grounders, and helps Alex wherever and whenever he can. I fill with pride as our daughter, Kaitlyn, supports Alex and many other campers with high-five’s, endless smiles, and positive words of encouragement. I beam like any proud parent as Alex confidently approaches home plate, grips a plastic bat loosely across his lap, and waits for the wiffleball pitch. Like any parent, I get nervous hoping he will succeed, and hold my breath until he does. That is usually the time when Alex glances to me as if to say…Relax, Dad. I got this.
Then, he connects!
Although his plastic bat barely moves because of Alex’s declining arm strength, the joy on his face is incredible to see as the ball bounces a few feet before him and he transfers his hand from the bat to wheelchair joystick. You’d think he hit a line drive as he drops the bat while zipping to first base, eager to beat the throw. Once safely on first, he’ll lead off the bag before the next pitch, and then zoom full-throttle to second base when the next kid connects. He’ll do the same to third base, and then to home…swinging the back of his chair across home plate as if he were sliding in with the winning run. It’s beautiful to behold…and needed perspective for me to keep pushing on with Duchenne.
The welcome and renewed perspective doesn’t end there!
As one of the roving camp instructors, I chat with kids with disabilities ranging from autism to cerebral palsy to the ever-familiar Duchenne, as we prepare them to run to the next base. They, in turn, give slaps of five or ten or whatever they want, display proud grins of accomplishment and success, and express their simple joy for doing what many of us take for granted. I smile with admiration as campers’ youthful Buddies push wheelchairs and lead determined walkers around the bases by hand, while encouraging every athletic effort as true friends do. I nod with understanding as parents cheer their kids to do their best, and later express gratitude for the welcome change from daily caregiving. During breaks, we speak with parents who tell us how their kids look forward to the Fantasy Camp all year long, as its one of the highlights of their year. We listen as some tearfully share how their sons or daughters sleep wearing a Reds uniform in the days leading up to camp because they are so excited.
As you can guess, the Fantasy Camp is a brief escape from life with disability, but one that is SO recharging to the soul, kids and parents alike. It gives Alex a chance to get out bed and out of the house. It changes his perspective from the four walls of his bedroom to the four corners of the infield. It provides him with conversation, laughter, and smiles he so desperately seeks. It pumps him with pride of connectivity, as it brings families, friends, and larger-than-life Major Leaguers standing by his side and cheering his effort. It helps him to live a life of his dreams, as well he should.
Likewise, the Fantasy Camp helps me to understand the big picture of life with Duchenne. It helps me to understand that although the disease is horrible, terrible, relentless, unforgiving, menacing, teasing, threatening, discouraging, exhausting….[insert adjective here]…it’s life. It’s our life. As difficult as it is sometimes, it could be worse. As unfair as it feels, it could be less fair. As isolating as it seems, we are not alone. Baseball Fantasy Camp for Kids helps us to understand that life is a matter of perspective. It may not be the life we expected, but it’s the one we have. So, we had better live it to the fullest, like the campers do every year!
At the end of the day, as we loaded into the van, Alex summarized his approach to hitting, which offers valuable life perspective.
“Hey, Bud! You did really well today!” I told him.
“Thanks,” Alex replied. “It was fun.”
“And those hits…way to go!”
Alex nodded proudly, and then added like a true Major Leaguer…
“I just look for a pitch to hit.”
As we all should.
For more information about Baseball Fantasy Camp for Kids
please visit http://www.baseballfantasycampforkids.com/