What words could I use to describe my seven year old ringing the bell at St. Jude in Memphis?
Many days my wife and I are still in denial. This can’t be happening. How is this happening? What happened to the life we had imagined for our child? Will he survive? What will his long term side effects be? The harrowing terror of your child’s cancer diagnosis (brain and spine cancer nonetheless) is nearly impossible to put into words.
Still, and equally so, it’s impossible to put into words how proud I am of the the incredible bravery, resilience, and perspective that William has carried through this journey. I knew this to be true before this journey started, but now know this more in my core than ever before: the measure of one’s character is not what happens to them, but how they respond.
In that, my favorite poem “Our Deepest Fear” and reflections from my previous post continue to aptly describe what perspective my little boy has offered to the world – and most of all me, his mother, and his siblings.
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. … And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”
He said goodbye to his dog (who had to be put down) two days before his diagnosis. Two days after that, he had brain surgery. Two weeks after that, he’s at St. Jude in Memphis – saying goodbye to his siblings and friends for months to go fight for his life, undergoing 30 treatments of proton therapy (radiation) in his brain and spine. Standard of care for medulloblastoma (William’s diagnosis) is surgery to remove the most amount of tumor as possible, followed by radiation therapy, then chemotherapy.
The horror of this reality has shaken me to the core, but how he has carried his cross has fundamentally changed me. Indeed, we are powerful beyond measure. Indeed, we are meant to shine as children do – and indeed our light can illuminate, liberate, and inspire others. As you may have noticed from the video, the tremendous admiration for all those watching William stem from his incredible response to the adversity his is facing.
He never complains, he’s maintained an incredible sense of humor, and his smile has never ceased. Brain and spine radiation in the morning? That’s fine, he and Mom are off to a 3 mile bike ride in the afternoon.
Waiting room before treatment, let’s play hide and go seek with another fellow warrior. Those witnessing could not help be affected at the innocence, resilience, and bravery.
Daily fasting and anesthesia got annoying, so he decided to just do his treatments awake and just not move, listening to his favorite tunes (Imagine Dragons always at the top of his list).
Many were skeptical he would be able to do so (a seven year old laying completely still during brain and spinal radiation), but they clearly didn’t know who Iron Heart is. This gives insight to the admiration in the eyes of all those cheering him on as he rung the bell.
As he walked down the hallway for his daily treatments, his mother and I are somewhere between laughing and crying, all the while proud beyond words. Since this journey has started, prose, lines, and lyrics all carry much more profound meanings.
Drew Baldridge’s song “Tough People” hits closer to home than I could have ever imagined.
She was four years old when they got the news
It was in her little lungs, it was stage two
Mama spent every night by her bed
And daddy shaved his head
Talk about tough people
Yeah, there were plenty of times she could’ve gave up
But she didn’t
Nah, she fought like hell ’til she rang that bell in MemphisOh, there’s a whole lotta bad in the world out thereOh, and it’s hard to keep goin’ when it don’t seem fairKeep on fighting when you’re back’s against the wallKeep on getting back up when you fallKeep on keeping your head held high‘Cause I still believeHard work pays offGood beats evilAnd tough times make tough people
Indeed, tough times make tough people (if they keep fighting). To see this example lived by my seven-year old in the most horrific of circumstances has been awe-inspiring. These kids are called heroes for a reason. When I think about heroes, the example of Todd Beamer came to mind. Say the Lord’s Prayer, “let’s roll”, then battle. Clearly the circumstances of Flight 93 are not the same and William has not said these exact words, but I witnessed a similar heroic spirit in him everyday.
William’s perspective is indeed on offer for each of us. His light is giving us all a model of what’s possible – an illuminating vision of what carrying one’s cross par excellence looks like. This has light has liberated me and reminded me of what’s inside each of us. Indeed, this is our deepest fear, this light and potential within us. Though it’s terrifying, it’s possible – and indeed, we are meant to shine as children do.
- What does one do when the can’t build Lego with their right hand? Use the left.
- What does one do before radiation therapy? Play hide and go seek on their knees with strangers and a smile.
- What does one do after radiation therapy? Take a 3 mile bike ride and checkout Memphis with Mom
- What does one do as soon as they get home from finishing brain surgery and radiation therapy? Get back on the ice.
I wrote about one of my favorite movie scenes in the movie Rocky Balboa years before this started.
I don’t care how tough you are; it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But, it ain’t about how hard you hit, it’s about how hard you can get hit and keep moving forward, how much you can take and keep moving forward. That’s how winning is done…
William regularly gets knocked down but what has made him Iron Heart is his incredible resilience in getting back up. It’s not that he’s never scared or sad – it’s how he’s responded after getting knocked down that has been remarkable. It’s always darkest before the dawn – it’s staying with it – mind, body and spirit – that’s thing of champions – that’s how winning is done.
Contrary to the movie scene, in my case, the son has taught and reminded the father.
William, my son, my hero, my Iron Heart.
Third period and chemotherapy updates to follow.
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