On the other hand, Duchenne brings with it an incredible perspective unlike many other. It brightens as it darkens, amazes as it frustrates, and loves as it shreds. Simply said, Duchenne strips life bare and focuses our responsibilities to one another. I say this because when you see your son lying motionless in bed, unable to do practically anything on his own, other than speak, its real. When you watch him with others more able and see him smile and laugh, listen and support, and brighten and encourage, it’s incredible. When you hold his hand as he falls asleep or wipe his tears when he’s scared, its human.
It’s why I share our Duchenne journey. It’s why I share Alex’s story. I do for the life lessons it provides.
Alex lives with the monster Duchenne, through no fault of his own. The disease robs him of a life most of us enjoy and sometimes take for granted. He cannot walk. He cannot run. He cannot stand. He either lays in bed or sits in a wheelchair. Sadly, he has forgotten the feel of ground beneath his feet. His legs beg to move, but can’t. His arms strain to lift, but don’t. Some days, his lungs scream to breathe freely, but cannot. He requires assistance to eat, drink, breathe, dress, groom, toilet, blanket, blow, scratch, stretch, retrieve, transport, write, type, and vote, to name a few. His wave is nearly imperceptible and often overlooked though he desperately wants your attention. His voice is often unheard though he desperately wants to share his thoughts. With Duchenne, Alex’s restrictions will only increase with time.
It’s rather incomprehensible, frankly.
So, how does he do it? How does a young man living with Duchenne, on the cusp of adulthood, approach each day without fear? Without anger? Without resentment of others more fortunate? How does he handle watching his friends continue on their life paths that diverge farther from his every day?
The answer is surprisingly simple. We should all take note.
Alex lives as best he can.
He smiles as often as he can.
He laughs as much as he can.
He loves as strong as he can.
He helps others to do the same.
I cannot emphasize this enough, especially the last one. The kid is wise beyond his years.
Alex’s life perspective was on full display this past week when he received a bisphosphonate infusion to strengthen his bones at Cincinnati Children’s Hospital. The infusion pulls calcium from his blood and transfers it to his bones, which have become ravaged with osteoporosis from nearly 15 years of steroid use. Over time, Alex’s osteoporosis has led to spinal compression fractures in all but three of his vertebrae. It has lessened his bone density body wide to a point where a fracture is but a awkward twist or unfortunate snap away. It has rendered him unable to sit up straight because of severe pain. It resigns him to a prone life more than desired. Hopefully, the infusion will help reverse this current trend. Hopefully, the infusion will return strength to his body. He will continue this treatment every six months.
The first infusion began early Monday morning this past week.
Immediately upon arrival to the hospital, a slightly nervous Alex sought his friend Herb in lab testing registration, even though our destination was still seven floors above. You see, Herb is a familiar face for Alex and a calming presence. The two have been friends for many years now, dating back to our early Duchenne years beginning at age three. Through the years, they have shared smiles and stories while I fill out administrative paperwork. They never fail to make one another smile and Alex often seeks him out whether or not our visit involves lab testing. Herb is a solid, strong, middle-aged African-American man with a kind heart and a beaming genuine smile. He takes keen interest in Alex’s life and likewise Alex does his. Their relationship is beautiful to witness as they laugh, joke, and catch up. They ALWAYS end each visit with a fist bump.
After visiting with Herb, we proceeded to the Building A elevators. Alex led the way and rolled slower than usual from his nerves. I trailed with an overnight bag in one hand and his hoist pulled awkwardly in tow from the other. We passed several security guards who visually scanned us as Alex nodded his standard “Sup, man?” to each one until they acknowledged his presence. He then added multiple “Have a nice day’s!” until they smiled in return and wished him the same. He clenched his hand for hopeful fist bumps, but they unfortunately went unnoticed.
On the elevator, Alex made room for a young man about the same age as Alex and then asked if he was a doctor. The young man smiled sheepishly and replied he was only a hospital volunteer in cardiology, but hoped to be a doctor someday. Alex encouraged him and wished him well as the young man engaged Alex’s fist bump before departing a floor below our destination. You could see the hopeful volunteer smiling with pride as he walked away and then turned to wave as he continued his day with a bounce in his step. I couldn’t help but notice the irony of the brief exchange between the young men.
We arrived to the 7th floor and made our way to our home-away-from-home for the next thirty or so hours. We laughed as we checked out the room’s vast amenities, including a brick wall for an exterior window view, sterile smells of cotton and sanitizer, and a TV preset to hospital safety videos! I cranked and hoisted Alex out of his wheelchair and into his bed, set up his ventilator, and then unpacked our belongings before we welcomed the steady stream of administrators, nurses, phlebotomists, technicians, residents, and doctors that filled our day and Alex’s bedside. Many times, they would linger and share a laugh with Alex before moving onto the next patient. Throughout it all, Alex chatted with each person as if they were old friends.
The infusion itself was simple, once they found a good vein. The procedure took approximately an hour and a half, but then required an overnight stay to check for potential side effects such as nausea, headaches, hives, painful joints, swelling, etc. Alex and I were not thrilled, but made the most of it. They told us to consider it like a vacation. They enthusiastically promoted the comfortable incline bed, told us to order from the healthy room-service menu, and then pointed to the wall-mounted TV. Seeing all this, who wouldn’t feel like they were on vacation? We politely nodded until they left and then joked about our good fortune at such a resort facility. To pass the time, we talked about anything and everything and then watched a couple of movies and a lifetime’s worth of Cartoon Network! Our night was capped by a welcome and recharging phone call from home.
Throughout the day and night, Alex seized every opportunity to chat with hospital staff. He encouraged one shy nurse to talk about her newborn who she missed dearly. He complimented every hairstyle and beard or mustache that entered our room from doctor to room service attendant. He wanted the window blinds left open so he could catch the eye of anyone who would walk by and peer in our room. We eventually agreed that sleep would make our departure come quickly, so we called it a night. We both fell fast asleep as the day had been surprisingly exhausting. Throughout the night, I awoke often and then smiled in amazement (as I lay on the oh-so-comfortable fold-out vinyl chair-bed with a bar that undercut the middle of my back) while listening to friendly conversations between Alex and nurses who checked on him every half an hour.
Late the next morning, after breakfast and after a doctor looked at Alex’s bloodwork results, Alex was officially discharged. Not unexpectedly, Alex thanked the doctor and told him he liked his beard and mustache. The doctor blushed slightly, stroked his chin, and smiled with pride.
“Why, thank you, young man! That’s very kind of you to say.”
“Someday, I hope to have a mustache!” Alex added truthfully.
“Keep at it,” the doctor encouraged Alex's minimal growth and then continued proudly. “I’ve been working on this one for about a month now!”
The two talked facial hair growth for a little while before Alex then clenched a fist and nodded towards it. The doctor recognized the request and stepped forward to lightly connect the bump before departing.
Then, as I packed our bag to leave, Alex’s morning nurse came in and removed Alex’s IV from his arm. Naturally, Alex told her she looked pretty. A nice compliment from a kind young man, I’m sure she thought as she held a gauze pad to the wound and stretched a colorful Band-Aid across his arm. Perhaps she was flattered. Perhaps she had heard it before. Nonetheless, she seemed happy for the compliment and smiled. Again, I admired Alex ability to make anyone’s day.
But then…Alex revealed he still had much to learn when he added (innocently)…
”You probably don’t hear that too much, do you?”
An awkward silence filled the room. I knew he was trying to score points for his chivalry, but I froze nonetheless and hovered over our bag. I glanced sideways to the young woman.
She hesitated, surely contemplating her reply, and then acknowledged the compliment as she replied professionally.
“Well, no…not that much. But, thank you.” She then exited the room with a bit of a chuckle, a kind wave, and well-wishes for a good week.
With my tongue set firmly in my cheek, I continued packing our bag. I nodded recognition that life and how to live is a constant learning process…for everyone. No exceptions. Although Alex has taught ME a lot about how to live fully, smile in the face challenges, and laugh as often as possible, this was his time to learn. Because everyone needs guidance now and then. We all do, and we’re here for one another.
I took a deep breath, understanding my responsibility to help him.