Memphis, our home away from home.
We won the first period – successfully removing the large tumor from his brain. The second period is radiation (proton therapy) at St. Jude – 30 treatments to be specific, focused on the remaining tumors in his brain and spine. Third period ahead is chemotherapy, but the focus now is directly what’s in front of us.
The world looks different now. Music, poetry, and film now all have different meanings. Marc Cohn’s song “Walking in Memphis” definitely strikes a new chord. After what William has faced and his mother telling him she would do anything to take this from him and he replied “I wouldn’t let you Mom”, Marianne William’s incredible poem “Our Deepest Fear” has an entirely new meaning.
Before we started the second period, as we pulled into Memphis and passed the St. Jude signs on the highway, there was a moment in my and Naomi’s minds that rung of “wow, there’s St. Jude, such an incredible organization”. Then, as we exited and pulled into the St. Jude campus, we awakened from our momentary denial that we’re pulling in for our child. It’s a strange feeling; privileged to be here, yet wishing you never had to be.
Privilege. I’ve never seen such incredible care with an organizational mission that “will not rest until no child dies from cancer”. The way families and kids are treated is quite simply exceptional – they make the hell of war somehow fun for kids – and families don’t pay a dime for treatment. And they’ve taken childhood cancer survival from 20% to 80%. Indeed, “when you haven’t got a prayer… boy you’ve got a prayer in Memphis.”
Wishing you never had to be. Why am I pulling into Memphis? Why does my son have cancer? Is this actually happening? We’re going to radiate his brain and spine? We’re excited at the hope we have – that William is getting the best treatment in the world. But make no mistake, he has 30 treatments of brine and spine radiation and daily anesthesia (more on that later) to get through.
We’re with him before his treatments. As the anesthesia is admitted, his courage is remarkable. He closes his eyes and his mother and I, often in tears, have a mixed feeling of hope and hopelessness as they wheel him off to his treatment.
As his father, his bravery continues to amaze and overwhelm me – how we approaches this battle. After reading and writing on Stoic philosophy for a minute, I’ve realized an undeniable fact: Marcus Aurelius ain’t got shit on my seven year old. He has incredible poise and focus on what he can control – one battle at a time, one day at a time – always smiling and positive.
Naomi stays with him throughout the week and I’m commuting back and forth. Every time I leave him and Naomi, it’s a crippling feeling. We’re doing all we can to preserve “normal”, but we have three other children back in Indianapolis, travel sports, and life. How does one be a good parent fighting for one of their children’s lives, while ensuring their other children are given energy, love, and support? The days apart are unbearable, but then I’ll get a text out of the blue like the below.
I get a picture from Naomi’s phone of a Crumble store and quickly realize who is texting me. His positivity, bravery, and poise is exceptional. I’m overwhelmed at this seven year old child’s response to adversity. His smile and humor has never ceased throughout this battle. Iron Heart continues to epitomize his namesake.
One special highlight of our time in Memphis was Iron Heart getting to meet Alexander Strong. Naomi and I had the privilege of sharing the good news of his clear scans with him and his parents Christy and Matt Brown. Christy personally shepherded our family and William through not only getting into St. Jude, but what the journey ahead would look like when our family first got this horrific news.
To share this moment with them was incredibly sacred and special – Alexander Strong, Christy, Matt Brown, and family have given us hope – and continue to spread awareness and help families that receive the same devastating news that we did. They officially joined the fellowship of Iron Hearts and were given that gift from Iron Heart himself on the day Alexander’s scans came back clean.
Watching these young boys play and laugh was overwhelming. Marianne William’s poem “Our Deepest Fear” came to the forefront of my mind once again – it’s particularly moving as expressed in this scene in the movie Coach Carter.
“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.”
These boys do not play small and as they’ve let their lights shine, they are literally giving us all permission to do the same. They offer us the gift of perspective and resilience and with their example – as children battling for their own lives with incredible resilience, faith, and courage – they’ve given us the permission to shine our own lights. How does one carry their cross through obstacles, let alone the valley of the shadow of death?
Like them.
How we carry our cross and respond to adversity – indeed we are “powerful beyond measure” as letting our lights shine when things are the hardest is possible and within us, yet terrifying. Still, “we’re meant to shine as children do”. Expressed differently: “kids are the best of us.”
By their example, I’ve been liberated. These exceptional young men are changing the world by shining their lights – and they’re just getting started.
William, my son, my hero, my Iron Heart.
Ad-Free & Subscriber Log-In