September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
I'd love to tell you a story about a beautiful day; sunny and blue-skied with puffy clouds and a light breeze. A day I spent with my wife and our kids, taking a side trip from our first summer vacation at the beach, as this new-shaped family we were just beginning to become.
I could tell you that Jake and Stacey wanted me, Henry, and Logan with them because they already loved us enough to find comfort in our presence, and we wanted to go because being away from them that day would have felt empty. And that Alex and Josh stayed at the beach with Grammy and Nana, Aunt Amy and Raeann, because it was a spectacular day for just that.
I should tell you about the dream I had the night before, where my dad was in a hospital bed and my mother was with him, distraught. And my best friend Joe, who had died 5 months, 2 weeks earlier came to tell me, "He's not coming with me: he's not ready..." and then accompanied me as I carried Jake through a Spartan Race of obstacles, continually directing my attention away from collateral disasters and back toward the trials I needed to carry Jake through. I would tell you that later that day, I got word from my family that my dad was in the hospital, being checked out for some kind of cardiac episode, but that he was going to be okay, and you would wonder at how psychic I was.
I would definitely tell you about the awesome dinosaur, American Native, and Egyptian exhibits Henry and Logan and I saw at the University Of Penn Museum; I'd show you the skewed-perspective picture I took of them with Logan dwarfing a gigantic Egyptian bust that dwarfed Henry, the one I took by the fountain with them looking up so it looked like the fountain was spewing up out of Henry's mouth, and probably even the one a kind by-passer took of the three of us, because wasn't that a nice thing to do on such a pretty day?
I might even tell you that on our way back to The Shore, we stopped to get the boys whateverthefrig you call a Burger King Happy Meal, and that as we pulled away, Jim Croce's Time In A Bottle came on, and Stacey and I shared a look, because that's one of the songs off Our Mixtape from 30 years ago when the sun rose and set on Each Other and the warmth of that sun was boundless love and hope.
Unfortunately, the collateral beauty of that day, so very precious to me, has been eclipsed by the rest of the story: That day, while Henry and Logan and I were in the Museum, Stacey and Mike (Jacobâ€™s dad) and Jacob were across the street at CHOP, finding out that Jake had an advanced and very aggressive form of brain cancer with no known medical cure, and that it would be six months or maybe a year before we would lose him. The messages from my family about my dad came in and amongst terse texts from Stacey asking me to please come across the street as soon as possible. The look that Stacey and I shared, with our boys in the back seats in blissful oblivion, was blurred by tears over that cruel irony. And Alex and Josh had just that one last beautiful day in a life without Pediatric Cancer.
You should hang on to any sunny platitudes you might have heard about "not grieving what hasn't happened yet", because we spent the next 371 days fighting with all we had and celebrating his life every moment and every way we could imagine, very literally down to the last second. But to be honest we have now grieved AND celebrated him for 2250 days, which may sound like quite a long time; when in fact that day and this one exist simultaneously for all of us. And through the fellowship of families who've become so dear to us through the PCFLV, we've come to find that we are not alone, which helps us more than you might realize to hold ALL of our boys in the light.
Because that day and Our Story has been forever changed, wantonly marked up in red ink by Childhood Cancer - And for better and for worse, the song will never sound the same. But it still is and always will be Our Story.
"If I could save time in a bottle,
The first thing that I'd like to do,
Is to save every day till eternity passes away,
Just to spend them with you...
If I could make days last forever,
If words could make wishes come true,
I'd save every day like a treasure and then,
Again, I would spend them with you,
But there never seems to be enough time,
To do the things you want to do, once you find them,
I've looked around enough to know,
That you're the one I want to go through time with..."
-written by Jake's stepfather, Gary