If it was only so simple.
You see, tomorrow also marks the start of our son’s final year of high school, and most likely his final year of public education. Alex will be a Senior this year, which is incredible to believe. It seems only yesterday we brought home a little boy from Romania, wide-eyed, apprehensive, yet smiling. It seems only yesterday we enrolled him in Clough Pike Elementary with simple worries of Will he make friends? Will he be a good student? Will he color within the lines? It seems only yesterday we sat down with his preschool teacher to share his challenges with the still immature beast known as Duchenne Muscular Dystrophy. It seems only yesterday we watched him waddle down the hallway, eager to catch up to his classmates, while we held our breath he wouldn't fall.
It seems only yesterday…
Like any student, Alex will awaken tomorrow with excitement, only he won’t jump out of bed or leap down the stairs. He won’t grab a bite to eat, sling a backpack over his shoulder, and dash outside to a friend’s waiting car. Instead, Alex will lie still in bed waiting for us to remove his BiPAP ventilation from his face. He will wait for us to help him use the restroom, select what to wear, and eat breakfast. He’ll endure turning, twisting, and lifting as we pull clothes onto his body, secure a sling beneath him, and then hoist and roll him across the room before lowering him into his power wheelchair. He will then be repositioned until his comfort is achieved. He will sit patiently while we brush his teeth, comb his hair, and position his slipper-covered feet on the foot tray. After smiling for traditional first-day pictures, Alex will roll into the minivan, wait while we buckle him up, and then urge me to get a move on it, because he’s got people to see!
As we pull into the school parking lot, his worries may surface a little for the challenges he’ll face. But, knowing Alex, he’ll push them aside in anticipation of finding students, teachers, administrators, or staff he hasn’t seen all summer. He’ll eagerly roll out of the van, endure yet another round of lifting, repositioning, and feet placement before I publicly embarrass him by using Dad-spit to wipe crusted jelly from the corner of his mouth. Then, before rolling away into the crowd of nearly 2,400 other students at the new West Clermont High School, he’ll turn to me and ask for a hug...and I will gladly oblige. He’ll nod he’s ready, but then ask if it's okay to call when he needs help.
You bet, Bud. Go get ‘em!
With some apprehension, Alex will pivot his power wheelchair and zoom away, hopeful to fit into the social scene just like anyone else. As he disappears into the crowd on his last first day, I’m not saying there will be a tear in my eye.
So goes the easy part of his school day.
I say this because the first of his calls for help typically comes within an hour or two of dropping him off. Alex will call for me to either lift him back in his wheelchair because he is uncomfortable (note: I would NEVER expect a teacher to risk personal injury lifting a 210-lb. young man), help him use the restroom (a bottle), or bring him home because of back discomfort (believe me, it’s real!). Any of these reasons is understandable considering his Duchenne, especially since Alex's last spinal x-rays showed compression fractures now in EVERY thoracic and lumbar vertebra, except L3. Add to the daily challenge his steadily declining lung function, and it’s no surprise the day wears on him. Yet, he is determined.
I can only imagine his discomfort while he sits for long periods of time in the same position, unable to adjust. I can only imagine him trying to grin and bear it so as not to disrupt his class or interrupt a teacher. I can only imagine Alex debating whether he should call me. I can only imagine his frustration when he decides to call, but then cannot bring his cell phone up to his ear. I can only hope someone helps.
His school challenges won’t end there.
Because of Duchenne, Alex must ask for support to…
…open closed doors
…exit class early (i.e., wheelchairs and hallway gridlock do not mix well)
…push buttons on the school elevator. (Note: his new high school has three floors, and his class schedule sends him from floors 1 to 2 to 3 to 2 to 1 to 2 to 1…every day. If you’re counting, that’s 14 separate pushes for someone who cannot reach the buttons and must seek help for every push).
In the classroom, he must ask for support to…
…access his backpack, which he carries on the back of his wheelchair (though this may be replaced by a portable ventilator this year)
…place a pencil in his hand
…take notes (his writing is very slow)
…open a textbook
…hold a textbook
…turn a page
…hold a page
…use a computer
…perform class projects
…get the teacher’s attention (i.e., Alex cannot raise his hand)
If he makes it to fifth bell (lunch), he must ask for support to…
…carry a lunch tray
…select and receive his food
…scan his student ID to pay the cashier
…EAT his lunch
…DRINK his water
…wipe his mouth
…brush crumbs off his shirt
…dispose of his lunch tray, and too often
…find someone to sit with him*
(*major kudos to his friend, Liam, who has helped Alex in the lunchroom in years past. Hoping their lunch schedules align again this year!)
Not surprisingly, after about one to two months of these daily challenges and Alex’s overall physical fatigue, the school day becomes too much for him to handle. That is when he typically transitions to Home Instruction, a program where a district teacher comes to our home a few days each week for one-on-one instruction with Alex.
In Home Instruction, Alex stays current and connected with his school. His class typically begins after the regular school day and lasts for a couple hours while he lays in bed. His teacher helps him to read books, discuss academic concepts, and take tests including rounds of state-mandated testing and even the ACT, all required for graduation. Home Instruction will then likely continue through the winter months due to cold temperatures and his fatigue, and then slide through spring towards graduation. The arrangement is not ideal for a social kid like Alex, but it works and has served him well for the last six years.
As tomorrow brings a new day, a new school, and a final lap in Alex’s public education, our wish for him is simple….keep smiling. While he lives with an unforgiving monster that steals a little of him every day, we are in awe of his approach to life. It’s beautiful. It’s remarkable. It’s Alex. His school year will be challenging, but we couldn’t be prouder of the young man he has become.
So, what’s his next step? The one after high school graduation?
Simply put…who knows?
With Duchenne, you focus on the present and let the future sort itself out as you go. You do what feels best for your son and consistent with what he wants out of life. You do anything to keep the smile on his face and the joy in his heart. We realize many young men with Duchenne further their education into college and beyond. Many others continue into successful careers. Some marry and live effectively on their own. Some get jobs. Some are vocal advocates. Some stay at home. It’s a wide range of possibilities. For Alex, we take it one day at a time, if not one moment at a time. Simply said, we will cross that bridge when we get there and when he’s ready.
Tomorrow, as I watch him roll into school on his last first day, I’ll now admit a tear will fall.
It will because this young man is happy...
...which is our ONLY goal for his education.