At least, that’s how I see it.
I say this because I grow so tired of reading, hearing, and seeing people berate, degrade, and downright stomp on others solely because of differing perspectives, solely because of differing politics, race, religion, or supposed privilege or lack thereof. Republican or Democrat, black or white, Christian or Muslim (or any combination of the world’s vast beliefs), legal or illegal, rich or poor, Buckeye or Wolverine…I’m sick of it. If I read another all-knowing Facebook or Twitter post that includes unnecessary words such as deranged or lunatic, I’ll puke. If I hear generalizations such as elitists, whiners, or extremists, I’ll scream. Add in such fine and thoughtul flattery like nutjobs or libtards and I’ll swear off social media for the rest of eternity. No joke. It’s tiring, juvenile, and ultimately sad for everyone.
But, strangely, these observations are why I LOVE Duchenne!
Believe me, never in my wildest dreams as a Duchenne parent would I think to ever say that I LOVE Duchenne but, in this case, I do. Duchenne is grounding. It’s raw. It strips life bare of most absurdity. It cuts through the crap we put upon ourselves because Duchenne is human reality. A cold, hard, and unforgiving reality. And with it, Duchenne brings a perspective of life on how to live…in real time and space. Not tomorrow or yesterday, but today. Right now!
Mark my word, there is no fake news about Duchenne. It sucks. It’s isolating. It’s exhausting. It’s brutal and relentless. Yet, it’s life. Hopefully, there will be a cure someday so that no young man or woman (and family) has to live with this monster ever again. Hopefully, Duchenne will be a distant memory for all who live with it today and a foreign concept to future generations yet born. Hopefully, Duchenne will never see the light of day again.
But, for now, Duchenne is here to stay and it’s universal. The beast exists across ALL borders, races, and socio-economic standings. It holds no regard for cultures, beliefs, or political ideals. It could care less about any fabricated crisis that humans place upon another merely for the benefit of an agenda. Silently destructing at the genetic scale worldwide, Duchenne simply claims its next victim and goes to work destroying human life one muscle fiber at a time, sadly stealing young lives every day before their prime.
So, I ask you, why waste time putting down another so we may stand taller? Why silence an opposing view without listening to what it may have to offer and considering its benefit even if it doesn’t involve us directly? Why shout your thoughts and beliefs hoping the increased volume will drown any opposition and pave an easier path? Instead, why not take time to listen, cooperate, and encourage one another? Why not take time to live, laugh, and perhaps love despite our differences? It’s not that hard.
From my perspective, we may learn something about ourselves, if we did.
I say this because of what I am fortunate to experience every day as Alex’s primary caregiver. I say this after wiping his mouth, nose, and butt every day. I say this after applying lotion to his skin, brushing his teeth, and washing his hair, to name a few. I say this after experiencing HIS joyful approach to each day and the love he exudes for everyone he meets. Seriously…everyone (if you doubt me, you need to meet him).
Think about his approach to life.
When you cannot…
…stand, walk, or run,
…sit up, shift your body, or lift your arms,
…eat or drink without assistance,
…clean or groom yourself without help,
…scratch an itch or swat away a mosquito or bee or spider crawling up your leg,
…breathe without support, or
…simply move your body the way you so desperately crave,
…yet you STILL smile, laugh, and love…You know how to live!
When you are alone and wait, sometimes days without end, for others to simply…
…visit you, or
…yet, you STILL smile, laugh, and love…You know how to live!
When you can swallow the pain of…
…yet, you STILL smile, laugh, and love…You know how to live!
When you help others to feel better about themselves despite your adversity…You know how to live!
How I wish you could hear the frequent bursts of laughter coming from Alex’s room…when he has only his thoughts, video games, or movies to entertain himself. If you did, you would hear a content and happy heart and a free and joyful soul…despite Duchenne. How I wish people of the world could adopt his smile when relating with others and extend a fist to bump instead of a fist fight. If they did, they would see humanity’s goodness as Alex does…despite Duchenne. How I wish to always remind myself to let go of frustrations that admittedly overwhelm me sometimes and see life as Alex lives it. When I do, I experience the beauty life has to offer…despite Duchenne.
For me, THIS is how to live. THIS is what brings joy to my heart and compassion for others less fortunate. THIS is what makes life’s pettiness disappear. Not stubbornness to prove one’s self worth. Not righteousness or supremacy or belief or entitlement above another. Not as we are seeing the world behaving today, seemingly everywhere, top to bottom.
Duchenne is life exposed. It’s raw. It’s rare. It’s priceless. And, at no time is this more apparent in our household then during our days and nights sitting together…with George.
I’m not sure when Alex came to be known as George. It just kinda started one day long ago when Kristy referred to Alex’s curiosity in similar vein as the children’s literary character, Curious George. You see, Alex asks questions. LOTS of questions! So many that we nearly costumed him one year as Question Boy for Halloween (though he paraded the night as Captain Jack Sparrow, if I recall). Nonetheless, the name George stuck. And to this day, we refer to our time with Alex as Sitting with George.
It’s a peaceful time for our little family. Alex typically rests in his incline bed watching whatever he likes on television (because of his chronic back pain, Alex is most comfortable in bed instead of his wheelchair). Usually, he’ll watch a YouTube channel of someone playing a video game and narrating the experience (yes, this IS a popular thing these days) while Kristy and I and/or others sit on an adjacent couch and do our thing while spending time with him. On weekends, we are often joined by Kaitlyn and John who play video games with Alex or watch a movie or try a hot sauce challenge including fun and interesting questions. Alex’s good friend Zach will often bring another PlayStation console to play video games alongside Alex and silently bond through mutual gaming experience. We’ll host extended family gatherings, New Year’s Eve celebrations, and even a HS graduation ceremony equipped with a marching band…Sitting with George.
Every night, we’ll share family meals in Alex’s room as well as routines of Bachelor or Bachelorette on Mondays, America’s Got Talent on Tuesdays, Ellen, Jimmy Kimmel, Jimmy Fallon, The Voice, The Four, The Golden Globes, The Oscar’s, The Emmy’s, The Grammy’s, etc…you get the picture. We laugh (sometimes hysterically), cry, and scream at the antics only mass media and too much time spent together can provide. You name it, we watch it (or fall asleep to it)…together, as a family, while…Sitting with George.
Call us boring or whatever, I don’t care. But, I’ll take this lifestyle with Duchenne any day. It’s simple. It’s fun. It’s loving. It’s bonding. Sure, we’d love to hop in the van and cart our family to a school sporting event or concert. Sure, we’d love to jump up and run outside and toss a football, baseball, or shoot hoops in the driveway. Sure, we’d love to take family vacations somewhere exotic and warm, or climb mountains or water ski or travel the world.
But, we can’t. So, we don’t. Because sometimes life doesn’t work out as planned.
And, that’s okay.
Instead, and as Duchenne advances, we make the most of living with the unwelcome monster. More importantly, we lean on each other and do so together…as a family. I’m not sure how we’d be able to cope with Duchenne otherwise. The cool thing is that as Duchenne accelerates, we’ve learned that life slows down while Sitting with George, allowing us to enjoy every moment while we have it. Together. Be it helping Alex eat or drink, listening to him explain a movie fact or test our knowledge, or watching him navigate a video game with the utmost concentration while he simultaneously talks about anything and everything, it’s a life simplicity unlike few other. We’ll take it!
And, from my perspective…I wouldn’t trade it for the world.
“Okay, George! What’s on tonight?”