“You’ve graduated!” She said.
That was the scene in Alex’s bedroom two weeks ago, following the departure of two Palliative Care nurses from our home. For the past 15 months, StarShine, the Hospice of Cincinnati Children’s Hospital Medical Center, had provided nursing and other therapies (Physical, Holistic, Music, Social, Spiritual, and Child Life) to help Alex overcome debilitating back pain and get back into the real world, so they say. Nurses visited every Wednesday at 3PM to evaluate his overall health and pain, assess skin issues commonly associated with bedridden patients, and administer testosterone injections to bolster bone strength. They usually stayed for an hour or so, sometimes more. Their visit became a highlight of our week.
And for good reason!
StarShine helped Alex strengthen physically and emotionally. They encouraged mobility and social engagement. They boosted his trademark positive spirit during the frustrating and isolating pandemic. Together, StarShine staff and Alex made holiday crafts, played guitar and sang songs, and watched any show or movie Alex had queued up for their visit. They whispered mental journeys and exercises to help him relax and realize his capabilities. They pushed him sometimes to the point of tears to get in his wheelchair. Most importantly, they connected with Alex on a personal level. They filled his heart, and ours. They made him feel whole. They made him feel connected and human. What more could a parent ask?
Then, in one phone call, it ended. Just like that.
“Hi, Mr. Click,” the voice announced with clinical precision. “It’s Dr. Rachel from StarShine.”
This isn’t good, I immediately thought. Dr. Rachel, Alex’s lead Palliative Care doctor, rarely calls us and, when she does, something serious is usually afoot. For example, last Spring Dr. Rachel called to discuss an upcoming Zoom call with all of Alex’s doctors. That experience was quite memorable (www.davidlclick.com/blog/tug-of-war) to say the least. Later, during our last conversation in clinic visit in August, Dr. Rachel openly questioned whether Alex still needed StarShine. She knew Alex preferred to stay home in bed and that his effort to get out of bed was taxing, if not avoided. But, after listening to Alex describe his lower lumbar pain, she agreed to continuing home-based services. She said we would revisit his need at our next clinic visit this coming April.
That plan obviously had changed.
During the most recent call, Dr. Rachel spun it the best she could. Alex had graduated, she said. He should be proud of his accomplishments that he no longer needs home visits. What? She said she could assess his health and pain tolerance during clinic visits once every six months. This didn’t make sense.
“Besides,” she explained. “With Alex’s choice not to get back in his wheelchair, the team…
“Choice? The team?”
“Yes, Alex has made it clear he does not want to leave his bed. While we respect his decision, this renders physical therapies to get him back into his wheelchair impractical and, thus, no longer needed. When I refer to team, I mean the Palliative team, including Physical Therapy and Neurology.”
Ahh, I see it now. Physical Therapy and Neurology have pressured Alex for months to get back into his wheelchair. Period. They wanted him out of bed and out-and-about. It became their primary goal. Else, they say, Duchenne wins. They want him back into society so he can enjoy life.
Hello! Who doesn’t want that! All of that!
It’s an exhausting debate.
Do they honestly think Alex enjoys his chronic back pain? Do they really believe he enjoys immobility? Do they grasp the emotional pain one endures when they see the world moving around them? Do they understand the feeling of hearing kids squeal with excitement somewhere outside your window while you are unable to simply move in bed? Do they know what it is like to require assistance for everything? Seriously, EVERYTHING! Do they honestly believe Alex chooses this lifestyle? To be away from the world and apart from human connection? This is Alex we’re talking about! One of the most social human beings who has never met a stranger! If you’ve met Alex, you KNOW what I mean.
Doctors tell Alex to keep moving, else Duchenne’s grip strengthens. We get that. More accurately, we live it every day. But, Alex’s lower back pain is persistent and forces a weekly balancing act for normality. Load him up with pain meds to mask the pain and he cannot poop for a week. Take away the meds so he can be regular and hello pain. Struggle hard to get his large frame delicately into his reclined wheelchair and then go nowhere because of the pandemic and his weakened immune system. Sure, he can roll to another room in the house or venture onto the patio, driveway, or perhaps even a park. Heck, we could go for a drive! But after a few incredible journeys, the hour-long hoisting and adjustments for the half-hour of uncomfortable wheelchair-sitting and pain tolerance soon borderlines on absurdity. He knows this. He feels this. He lives this! Before long, the thought of moving petrifies Alex to a point where he chooses his bed. Is that so wrong? His bed is his comfort space where his body and spirit thrive.
The nurses witnessed this every Wednesday, too! They saw his happiness with human connection. They saw his smile and heard his laughter.
I explained to Dr. Rachel that Alex’s need for StarShine went beyond physical health and mobility. I explained the weekly nurse visits were really the only outlet he had other than Mom and Dad (and occasionally Kaitlyn and John) sitting with him in his room every day and night. I explained he needed these visits for social connection during an isolating pandemic. I emphasized how the StarShine home visits provided more support to Alex than she may ever really understand.
Hearing no response nor bend in her assessment, I sighed and asked when the services would end. “A month? After our next clinic in April?” I wondered.
Dr. Rachel explained Alex’s StarShine home visits were ending…the next week.
“Oh!” I replied with mild shock followed by a long pause. “That’s rather sudden, don’t you think?”
“Yes, I do apologize for the short notice. But, we need to divert our resources elsewhere.” Before I could reply to the oddly administrative response, she continued. “Besides, Alex has progressed to a stage where we feel he doesn’t need StarShine home visits anymore.”
“Really?” I reacted with surprise. It was all I could think to say in the amazement. What I wanted to say was that StarShine home visits provide an incredible resource BEYOND just the physical therapies to get Alex back in the world. While Duchenne is horribly and cruelly destructive from a physical standpoint, it is incredibly destructive, if not more so, from a social perspective. Duchenne is isolating. It severs past relationships. It prohibits chances to form new ones. It erodes resolve to keep trying. Simply, it leaves a young man alone and in the dust as he watches his friends and the world move on without him. So much I wanted to tell her. So, I did.
“The weekly nurse visits are the highlight of Alex’s week!” I said. “His friends don’t visit anymore. They’ve all moved on with their lives. They rarely call. They barely return his attempts to text message or Snapchat or whatever kids do these days. Alex has often told me it’s like he doesn’t even exist anymore. Heck, I can count on one finger how many friends regularly check in on him…and that friend is a former teacher!”
“I hear you,” she tried. “That must be hard.”
She had no idea.
“Hard doesn’t begin to describe it,” I continued in Alex’s defense. I explained how he lowers his incline bed so he can walk his left arm high enough to balance his cell phone on his chin. I then described how Alex works diligently to text one letter at a time using only his left thumb (and sometimes his tongue) to message friends. I expressed the heartbreak of seeing his disappointment that his friends rarely respond. When they do, the messages are often curt as if to say stop bothering me. When they don’t…
This is our current stage of Duchenne.
It’s more than physical. It’s more than physical. It’s more than physical. I can’t emphasize this enough.
“You know Alex!” I challenged Dr. Rachel. “He’s perhaps the most social being I have ever known. He craves human connection. ANY connection. A conversation, a fist-bump, or even a nod hello. He longs to talk with anyone at any time. He sees the good in everyone. He listens. He loves unconditionally. Now, imagine him bedridden during a pandemic! Alone. Think of that! Really, just think of that!”
“I know,” she offered weakly.
I explained that although Alex has physically plateaued at best and chooses not to get in his wheelchair, he still needs StarShine. I explained that although he shows little desire to challenge his back pain for a temporary wheelchair spin, that doesn’t mean he has given up.
Dr. Rachel sighed. I was not sure if it was for my pushback or Alex’s situation.
Please don’t misunderstand me. Dr. Rachel is awesome! Of any of Alex’s doctors, I think she understands pain’s cruelty more than others. She deals with pain treatment every day and delicately manages very difficult and tender situations with children, some terminal. She understood my frustration and I’m sure she had seen it before. I realized her general silence and tacit agreements were just her way of allowing me to vent.
“We’ll still see him every six months,” she cheerfully tried to end the conversation. “We’ll be able to see how he’s doing at each visit, and if he needs home visits in the future, we’ll restart them!”
Gee, thanks. Until then, we’re left to battle the beast on our own. Again. Sigh.
As I mentioned, life with Duchenne is not just a physical challenge. It is not simply movement or lack thereof. It’s an emotional challenge. A social challenge. It’s humanity in one of its rawest forms. Why is that so hard for some to understand?
When Alex was 8 years old and he lost his ability to walk and simply stand, doctors, therapists, and even insurance companies worked quickly and diligently to help him stay mobile, as if mobility defines a person. They fit and procured mobility equipment including wheelchairs, shower chairs, Hoyer lifts, and more so Alex could move about with confidence and stay a part of society. Take away mobility, the primary reason medical professionals championed for a young boy with Duchenne, and then what? When it comes to human needs beyond mobility – means and strengths for simple inclusion - it seems our society misses a beat.
That needs to change.
On our last Wednesday StarShine visit a couple weeks ago, we savored the time together with his nurses as if we didn’t want it to end. We reminisced about the rotation of all the wonderful nurses – Julia, Michelle S, Michelle R, Missy, Sarah, Kris, and Lucy. On that last Wednesday, we laughed with a young nurse, Kayla, who recently joined StarShine and used the visit with Alex for training purposes. We chuckled how Alex routinely showered each and every nurse with compliments of their hair, wardrobe, or smile, Kayla included. We laughed when nurses awkwardly climbed alongside Alex to administer a testosterone injection in his opposite arm only to hear Alex boldly brag he had a nurse in bed with him!
On our last StarShine visit, we smiled in memory of Alex talking and doing crafts with Tami, singing songs with Alexa, and socializing with Amy. We warmly enjoyed memories of Peggy providing holistic therapies and mental visualizations that calm Alex (and me) to this day. We see Peggy’s signs still hanging in his bedroom saying I Am Enough, I Am Loved, and I Can Accomplish Anything! We reminisced about visits with Judy, the StarShine Chaplin, who provided a calming discussion about life and beyond.
Afterward, I quietly led Julia and Kayla from Alex’s first-floor bedroom, through our family room, and to the front door. We stood awkwardly in the foyer, not knowing the proper way to end 15 months of home visits so suddenly. I expressed my sincere thanks and appreciation for their caring and compassion with Alex. I said we would miss them and, if possible, it would be nice if they checked in with Alex every now and then, even if only by a phone call or text. They nodded weakly and mumbled words we both knew meant it wouldn’t happen. They thanked me for our family’s hospitality and acknowledged they would miss us, too. After another awkward moment, I reached for and opened the door and they walked out. Just like that. No hug, no handshake, no pandemic elbow bump. Just a nod of thanks and well wishes for good luck. I then shut the door and locked the deadbolt.
After a pause and a sigh, I walked back towards Alex’s first-floor bedroom. I worried he wouldn’t take the ending of StarShine home visits well. I feared sadness or perhaps cresting tears as we have seen before. I worried about regression, not just physically but emotionally, with the thought of losing more friends. But, when I entered his bedroom, what I saw sustains me to this day. As much as the beast Duchenne steals, destroys, or crushes any dream a parent may have for their son, it also provides unique moments that make you smile, laugh, or simply forget about your worry or how you feel.
There, I found Alex resting quietly on his inclined bed. His Star Wars-themed sheets bunched disheveled at his waist. The wall-mounted television above and beyond the tips of his toes softly broadcasted The Goldberg’s, as it had before. The late afternoon winter sun waned gently through his bedroom window. Young shrills of neighborhood activity echoed somewhere in the distance.
As I stood at his bedroom doorway, Alex did not focus on my entry, the television, or the muffled sounds outside. His gaze fixed sideways to somewhere beyond the window, his mind lost in thought. He showed no expression other than perhaps simple exhaustion with everything…with Duchenne…with life. I moved alongside his bed and reached for his hand, waiting for him to share his thoughts.
“Just my luck,” he proclaimed after a defeated sigh. “On my last day with StarShine…a hot young nurse finally showed up!” He slowly shook his head and then chuckled. “I’m cursed.”
I laughed aloud and smiled proudly. That’s my boy!
With all the headwinds…
This kid is incredible. Absolutely incredible.