falling leaves and flying doves
October 19th. This is the day when I looked out the window from the 7th floor of Children’s Hospital Colorado oncology unit in Denver and particularly noticed how the orange, red, and yellow leaves didn’t just fall straight down once they let go of the trees, but that their movement was playful, as though there was not a single care in the world. On this colorful autumn day, Peyton and our family were like leaves too, but only in that we were bidding farewell to a solid and sure tree - to the life we knew before this day. This is the day, 10 years ago, when the words “your child” and “cancer’ were spoken out loud in one breath.
Last month, September 26, 2020, Peyton, Noel and I witnessed something among a golden backdrop of trees and a blue and cloudy sky that took our breath away. We stood in awe with others as beautiful white doves were released into the air during the CureSearch United Walk held in Denver. This, and the one minute of silence before, was done in memory of all the children who have died from cancer.
Before the birds were released into the air, the silence was broken by the song Clouds, written and sung by Zach Sobiech. As his song played over the speakers, a dozen or so birds flew in unison, undulating like one big wave. The words of the song washed over us. It was a struggle to hold back the tears.
We knew this song well. It had been quite some time though since we’d listened to it. Zach’s song went viral during the second year of Peyton’s cancer treatment when Peyton was 12 years old. Zach’s song was his way of saying goodbye.
And we’ll go up, up, up
But I’ll fly a little higher
Go up in the clouds because the view’s a little nicer
Up Here, My Dear
It won’t be long now, it won’t be long now.
When your child has survived cancer and has made it into adulthood, you find yourself asking the question - Why did my child survive when others in the same boat did not? Why did the treatments work for my child, but did not work for other children?
We just celebrated with so much joy, Peyton’s 20th birthday. Zach Sobiech hoped to live to his 18th birthday, which he did, and another 17 days. Zach was diagnosed at age 14 with a rare form of bone cancer called osteosarcoma. He relapsed 3 times. Zach passed away May 20, 2013. Zach's mother, Laura Sobiech, wrote a memoir of her and Zach's life, Fly A Little Higher, where she bravely shares their journey through terminal childhood cancer and the way Zach chose to live. Laura Sobiech said about her son, "There was so much going on in his head that he worked through on his own, so much wisdom that should be heard as he walked his road of suffering." As a mother of a child with cancer, Zach’s story and the way Laura shared it was such a powerful comfort to me. We learned about Zach during a time in Peyton’s treatment when there were so many complications and an emergency biopsy was done to determine if Peyton had relapsed.
I realize that children inflicted by cancer is gut-wrenching to watch or to hear their stories, but they are some of the wisest humans and their words are the wisest words we will ever hear. Anytime they share anything about their experience or their thoughts about life it causes you to seriously consider your own choices for how you spend your precious time.
It won’t be long now, it won’t be long now.
If only I had a little bit more time with you…
Zach’s song is more than about saying goodbye. To me, it’s about cherishing life so much that it’s all that more difficult to say goodbye. Life is fleeting, like clouds, so cherish it right now, while you have the gift of it.
Zach’s video of his song has been viewed almost 15 million times on Youtube and through his song he has given $2 million to research for childhood cancer. Amazing! A link to Zach’s video is below.
Peyton is alive. PEYTON IS ALIVE!!!
Even though we had already decided on helping raise money for childhood cancer research through Peyton’s Potion during Peyton’s cancer treatment, learning about Zach Sobiech made that desire even stronger in us. One of Peyton’s greatest choices he has made in his life of how to spend his precious time is to do what Zach did and help with the funding so desperately needed for childhood cancer research.
Today, on Peyton’s diagnosis day, as I thought of what to write about, I decided that along with Zach’s wise words to us in his song, I would share with you a few of the wise statements Peyton expressed during his cancer treatment. I think they show how there was a lot going on in his head too that he worked through on his own. Cancer caused Zach and Peyton to reflect in different ways than they might normally and from that process so much wisdom comes. Wisdom, to put it in Laura Sobiech’s words, that “should be heard” when it’s a child walking a road of suffering.
My hope is that this journal entry and Peyton’s words below will inspire you in some way to cherish even more your one precious life, and I also hope that it will inspire you to want to help childhood cancer research through owning a bottle of Peyton’s Potion.
Journal entry posted on caringbridge.org on June 29, 2011
Today at Children’s, while in the waiting room, Peyton took his Mickey Mouse hat off and chatted away with other bald children. He talked for a long time with a girl who spoke openly of her recent relapse and upcoming radiation treatments. She told him that she was glad she wasn’t diagnosed with cancer until after her 18th birthday. Peyton told her that he felt the same about being able to have his 10th birthday before he got diagnosed. As I listened, it made sense for children dealing with cancer to be discussing the significance of a birthday in relation to the day of diagnosis. One is celebratory. One is not. Peyton, although 10, seems older to me than a 10-year old.
It brings about statements such as this one Peyton said to me later today, “Mom, living just one more year is better than a lot of things.” He said this in one of his head-crouched-in-his-arms-staring-off-into-space moments. All I could think to say was “I agree, Peyton.”.
Journal entry posted on caringbridge.org on October 25, 2012
Last week we brought Peyton with us to a friend's house for dinner, one of Noel’s colleagues who is a doctor. Being a doctor, he was curious about Peyton’s scar on his chest from the infected port. Peyton pulled his t-shirt to one side, exposing his upper chest, and the doctor did what every doctor naturally does that sees his deeply recessed scar - he reached out to touch it. Every time this has happened Peyton recoils abruptly. He doesn’t like it touched, not by anyone and last night I found out that he doesn’t like to touch it either. Afterward, when we were home lying by the fireplace, he began lightly scratching on his pajama shirt at the area around his scar.
It itches a lot, huh?
Yes. A lot.
Does it feel better to scratch it over your shirt?
I don’t want to touch it.
Because if I scratch it it might get cuts and open up again.
Do you wish it wasn’t there?
…a long pause.
He tells me that the tips of the flames in the fire are green. I can’t see it, I tell him, so he waits patiently for me.
Oh, there they are! Wow, that’s so cool Peyton. That’s cool that you noticed that.
…another long pause, then he said…
I wouldn’t have my story if I didn’t have my scar.
Jess is Peyton’s mom and co-founder of Peyton’s Potion. She is a Life Story journal writer and storyteller. Jess has been keeping journals since she first learned to write. Her journal entries throughout Peyton’s cancer treatment were also posted regularly on caringbridge.org.