Fragments and Fireworks

The screen has been blank for an hour. Not a word written, not a single thought formulated. So, I'm just going to wing it. This entry is about us, but it's also about you. You know who you are. You have already heard my wife and I thank you so many times. And each time you put your hand on our shoulder, or wrap your arms around us, or respond to our email and you tell us "no, thank you." And then we probably repeat ourselves a few times and that new, slightly unstable crazy part of us we've been trying to keep buried creeps out, and we get lost in thank yous and hugs and "no, seriously" and "you have no idea...".

When my wife and I were contemplating opening our lives to the world, one thing we struggled with was what to name this...thing. This occasional rambling journal, the pictures, the Facebook updates, the portal from the outside to the very intimate inside. We rattled off various ideas which now escape me. But then three words came to us which sounded right but encapsulated an idea that we didn't understand: Hope for Parker.

Hope? What the hell is that? How were we channeling hope during a time like this? Weeks ago there was no hope. There was no future, there was no strength, and there was little energy to keep going, to keep fighting, to keep pressing on in the face of these inescapable odds. But we spit the words out. We cast out into the dark abyss of the unknown, grasping for whatever hope we could find.

When we wake up every morning, sometimes minutes but usually hours before the alarm, it hurts. It's a hollow and sharp pain. We sometimes wake up pre-soaked in tears. Our dreams cry. We resume conversations that had faded hours before. The transition from sleep to wake is the time between blinks and a single breath. We always talk about Parker and our daughter Taylor, and the day, and how are we going to do this? We try so hard to talk about the next day or the next week. We try to talk about the next month but the fog prevents us from seeing the ground. We get scared and run back to the comfort of today. We are searching for hope.

Our days are filled with eighty-five mile round trips and phone calls. They are filled with despair, with good news and with bad. One day we are enrolled in a clinical trial, the next we are told that the biopsy our son endured failed to collect enough tissue. And like that, we are once again on our own. We are surrounded by doctors that fight for us, and doctors that are afraid to commit. Nobody wants to be wrong. The system is setup to punish failure. It doesn't reward compassion and hope. The system doesn't want to pay for what is right, it wants to pay for what is cost effective. And so, when our insurance company tells us in no uncertain terms that we can't keep seeing the doctor that we trust, and more importantly, the doctor that our son trusts, then I can only raise my hand in the air and flick my fingers towards my body. You and me. Let's do this. It isn't about us, it's about Parker. It's about what is right. It's about hope.

Hope for Parker: those three words that made no sense to us, but felt right.

We are learning now just what it means: it's about challenges, it's about digging deep, it's about stripping down and throwing ourselves into the world in a way that is foreign and uncomfortable. It's about community. It's about a shared experience. It is humanism at its core. Hope for Parker is about learning who we really are. It represents an opportunity for us all to make our lives better. It's an opportunity to make the world better. Hope for Parker is our son, but it is all of you as well.

And to each one of you who made Parker's Carnival made our son smile. You made him feel like a super hero. You made us all feel like super heroes. You made the world a better place, and you gave us the gift of hope. Thank you.

No, seriously, thank you.

The Landis Family