Moving Forward

I'm scared shitless. About everything. Falling asleep, waking up, the next stage, wondering if today was the last good day, missing a happy moment, scared of giving up, scared of fighting. I'm scared for Parker, for my wife, for my daughter. I'm scared she won't remember Parker. I don't want her to not remember Parker.

Parker is the kid that runs up to all the neighbors and asks how their day was. He has learned from us the dance that we all do without being taught. His short conversations are a way of building up his understanding of the world and how he fits in it. Watching this is incredible. I'm so proud of him. Proud of his courage, his strength, his willingness to let himself go, to trust and to love. Parker embodies the purity of life. The last few days have been exhausting, but the Parker we know has been with us. Not the Parker hazed with steroids, not the little boy who has been lost in an unfamiliar world of doctors, nurses, beeps and needles. But our Parker. It has been so wonderful to see him again, to talk to him, and to watch him mentor his sister the way he always has. She has learned everything she knows from him.

The next six or seven weeks have been what we have longed for since his diagnosis. Radiation. We know that radiation is the one treatment that should bring real relief to Parker. We don't know how long it will last. It doesn't matter. It's a respite he has fought for and deserves. We look forward to helping him get hooked up and sedated, to sit so still, so peacefully still for fifteen minutes while the invisible light enters him. And when he wakes we will be there to welcome him back, to help him walk or give him a ride in his new shiny wheelchair. And if he's mad, we'll let him be mad. He can punch me, he can scream and cry, he can say the worst words he knows. And if he's happy, we will be happy. It just is. It isn't up to us anymore. It never really was.

Parker's most frustrating experiences come from losing control. Whether it is control over choices, control over his body, or control of his future. Cancer has so far been all about letting go of control. For Parker, for myself, for my wife. We each are slowly learning how to do it. But it isn't easy. It's really, really hard. The courage to give up a bit of independence, to set aside pride, to welcome the love and support from such a huge number of people is almost a struggle all by itself. It takes a bigger person to let others in and help than it does to be strong and do it alone. I guess I've had that wrong my whole life.

So I'm scared, but I'm hopeful. And in that hope comes strength. The strength to wake up, to face the next stage, to set aside fear of how the day will run, to enjoy all moments. And the strength to accept that being scared is ok. If we weren't scared, if we weren't fearful in these moments, we wouldn't be human.

#HopeForParker

February 5, 2016