Just one more morning I had to wake up with the blues.
Pulled myself out of bed yeah, put on my walking shoes.
Climbed up on a hilltop baby, see what I could see.
The whole world was falling down baby, right down in front of me.
So begin lyrics to the song Dreams I’ll Never See by 1980s rock group Molly Hatchet. The song is one of my all-time favorites, and an incredible cover of Dreams by the legendary Gregg Allman. When I first heard these lyrics as a high school sophomore, I hadn’t a clue how they would someday define my life. Back in the day, I simply enjoyed the passion in Danny Joe Brown’s growling voice and the powerful guitar rhythms that accompanied. The classic song is driving, inspiring, and genuine (much like anything written by Mr. Allman). The song also slices its way to my heart as we live with this thievish disease known as Duchenne.
'Cause I'm hung up on dreams I'm never gonna see yeah.
Lord help me baby.
Dreams get the best of me.
This is a very real part of living with Duchenne. I understand that lamenting lost dreams may be viewed as petty or selfish, but it's an elephant in the room that many Duchenne families and sons experience, though few speak about because of society’s expectation to stay positive. With Duchenne, the life you imagine becomes the life you never live. With Duchenne, the sandcastle of dreams you’d proudly built over a lifetime steadily crumbles from persistent winds and rising tides. You can only watch as the future you dreamed for your son, your family, and yourself, breaks apart one sand grain and muscle fiber at a time…and you can’t do a damned thing about it.
Dreams can be planned or sighted or teed up for your someday enjoyment. You can have them mapped in careful detail with milestones set along the way. Dreams can be dangling like a carrot or tucked safely in your pocket, each propelling you forward with excitement for the future. You’d spent a lifetime waiting, after all, and you’re ready to live the life you planned. Then one day Duchenne introduces itself and, well…let’s just say things change.
As if the diagnosis is not painful enough, the reality of life with Duchenne sets in fast as you watch your son fall behind in nearly everything mobile. You watch your son fall face first for the slightest of reasons, while his friends continue onward without delay. You watch your son waddle while others sprint. You watch your son scoot down stairs, while others leap. Soon, dreams of little league baseball…gone. Dreams of football, basketball, soccer…heck ANY sport…gone. Dreams of golfing, skiing, hiking, backpacking, canoeing, [insert activity here] with your son…gone. I could go on. The list of broken dreams is extensive, and when you venture too far into them, you can become lost.
Add in social media platforms like Facebook, Instagram, or Twitter, and realize how it's nearly impossible NOT to see what you thought you’d have. Your dreams are visible in your friends’ lives. Your dreams are plain as day in neighborhoods, parks, and playgrounds. You see kids running, jumping, and chasing. You see boys chasing girls and girls chasing boys, only to see your son swivel his head as he attempts to follow the excitement swirling around him. You see pickup basketball games in a driveway. You watch soccer balls kicked, footballs tossed, and baseballs thrown throughout the year. You see teenage independence and mobility…everywhere.
I fought like hell to hold onto my dreams. We signed up Alex for tee-ball, but then watched as he struggled to hold a bat, hit a ball off the tee, or run to first base. We signed him up for soccer, but then watched as blades of grass seized his feet like he was running through wet concrete. We signed him up for indoor soccer, only to then worry about trips and falls on the hardwood floor. I am certain other parents were confused at the sight of a Dad running alongside his son to catch him when he fell. I am certain they wondered why Alex always played goalie (because it was the least mobile position). I am certain they wondered why he could never stop a goal (he couldn’t bend over quickly). Sports had never been more stressful, and for the most unexpected reasons.
I also realize Duchenne Dads don’t have the corner of broken dreams. Duchenne Mothers have them. Duchenne Sisters and Brothers have them. As do Duchenne Grandparents, Aunts, Uncles, friends, and neighbors. Most of all, and least we forget, our sons have them. They see the world around them. They see what they thought they’d be. It’s frustrating. Duchenne doesn’t care who holds the dream because the monster will simply take what it wants, chew it up, and spit it out. Worse, Duchenne won’t quit until its mission is complete. Such a concept can be heartbreaking and, at times, debilitating.
Fortunately, Duchenne cannot steal the dreams it creates, and THAT is where I choose to focus my attention, as difficult as it is sometimes, while Alex’s Duchenne advances.
Pull myself together,
Put on a new face yeah,
Climb down off the hilltop baby,
Gonna get back in the race.
Strange as it sounds, Duchenne creates dreams, new and beautiful dreams that you never anticipated. The dreams are less physical and more emotional. They are less individual and more social. They are less predictable and more unexpected. And, if you aren’t too careful, these dreams may teach you a thing or two about life along the way.
…holding my son’s hand every night for the past fourteen years as we fall asleep,
…hearing him say I love you, every day,
…listening to his deepest held emotions, hopes, and fears,
…being his sounding board for life’s physical and emotional challenges,
…having your words of wisdom understood as a true road map,
…providing his daily (and often very personal) care without protest,
…seeing his smile as you tell him he is no different from anyone,
…experiencing his absolute trust in you,
…discussing with honesty the rights and wrongs of life and the world,
…watching his social skills in action,
…watching him help others to smile,
…seeing his sincerity with anyone,
…sharing every meal together,
…feeding him when he cannot feed himself,
…wiping his face,
…comforting his fear of dying,
…cheering his joy for living,
…enjoying family dinners in his bedroom,
…experiencing weekend getaways to another city and its zoo,
…experiencing vacations like Dudes Trip 2k15,
…watching him get Reds’ Owner Bob Castellini to laugh,
…sharing a hot dog with heavy mustard while freezing our tails off at a Reds’ Opening Day,
…watching him be fearless in the face of adversity,
…watching him bravely and confidently approach any girl,
…watching his social skills with any neighbor,
…experiencing his heartfelt and genuine smile,
…experiencing his laughter,
…experiencing his love,
…experiencing his life.
I could go on. The list grows every day as new dreams are realized.
Although, honestly, I can’t help but think about the life I thought I’d lead, and wonder what might have been. That’s a difficult feeling to shake and one I probably never will. But, when I open my eyes to what I have gained with Duchenne – a son with more joy in his heart than many have in a lifetime - it leads me to stand proudly and smile at my good fortune.
Despite the ugly monster known as Duchenne, Alex has taught me that life is not about what you want or think you want. It’s NOT about the dreams I’ll never see.
Life is about what I have.
…and it’s priceless.