In the last month or so, while I haven't been blogging, we've been doing. Bobby spent a total of three weeks on the Western Slope, painting a house for his cousin. I spent a weekend in Kansas with the small ones. There has been preschool. We finally got a little vacation, a three day trip to Moab with our mountain bikes to remind ourselves how good mountain biking can hurt. We met our friends Don and Rochelle there for three days of camping, no baths, fine red dirt everywhere, cold early mornings before the sun could reach into the canyons and cooking afternoons when no shade could be found. The boys thought we should never not camp again. It was a little bit of a letdown to have to sleep in the boring house again.
Immediately after we got home from Moab, Daniel was an honored guest at the 3rd Annual Sean Terry F*ck Cancer motorcycle run. It was an amazing experience, and not in the least bit our normal scene. I mean, we ride bikes. The kind we pedal. Wearing spandex and little foam helmets. Then we drink a beer and go to bed all sore, wind blown and exhausted. They also ride bikes. The kind they don't pedal. Wearing leather and probably not helmets. Then they drink more beer and party some more, in spite of being all wind blown and exhausted. Also, they are all Marines, being a Marine Corp motorcycle club. We come from a long line of conscientious objectors who ran from Germany to the Ukraine to Holland to the Americas every time they were threatened the possibility of needing to carry a weapon to defend themselves or their current country.
It was a fundraiser for the three honored guests, and thanks to the efforts of the organizers and the generosity of the bikers, they raised $5,000 for the three families. It was humbling and amazing. The ride is held every year to honor their brother, Sean Terry, who died from metastatic esophageal cancer after being exposed to burn pits during his service. I find it awesome, heart warming and amusing that Daniel is now an honorary Devil Dog, with his own vest, patches and everything. 
You'd think I would have done this before now, but I finally looked up the odds of Daniel being "event free" four years from now (five years from diagnosis) to discover that my clinging to the 90% prognosis was slightly misinformed; it is actually more like 75% since he is high risk. But it doesn't shake me up. I am experiencing an unexpected reaction to this news. It is something like...I can hardly say it. I'll have to explain it before I say it.
When you enter the world of pediatric oncology with a kid with Pre-B ALL, which is the most common type of childhood cancer, you immediately realize you are not allowed to freak out. You want to breathe in a bag, clutch at your pearls, wail and wonder why you...but next door, there's this kid with a type of cancer nobody has seen before and nobody knows how to treat. Across the hall, there's a kid with a brain tumor that has less than 1% survival. You meet teenagers who are terminal, who talk about their own death as an event looming in their near future. You meet parents in the middle of treatment who have so much hope, and you hope with them, laugh with them, take them at their word when they say they are certain their kid will beat the odds, and sometimes you fall right off the cliff with them when they have to go home because treatment failed and there is nothing else the hospital can do for them.
And all that time, you are the one with the kid everyone agrees will survive this. For just a day with your problems, others around you would trade anything. You are there, you are dealing with side effects, nausea and neuropathy, hair loss and mouth sores, fevers, high heart rates, low oxygen sats, steroid tantrums and weight loss right along with them, but with one major difference- you have the highest odds of any of them that what your child is going through will not be for nothing. You are envied. When you complain, you feel like a jerk. You suspect you are thought of as a bit of a whiny child by the parents whose kids are fighting bigger battles than yours if you fail maintain unfaltering stoicism.
You feel as though you must minimize the emotional toll, because your child will most likely definitely live. You must always qualify that you aren't with the band- you merely have a backstage pass. You wear stripes you haven't quite earned, because as bad as it gets, do you ever really think you will lose your child? Like really? Do you ever truly harbor the emotions of a parent who was at real risk for planning a child's funeral? And if you did, was it legitimate?
When the air one breathes in is saturated with the desperation seeping from behind heavy wooden doors lining a pediatric cancer ward, and the fresh air comes from the parents who, in spite of depressing odds, practice intentional joy and proclaim their kid the exception to the prognosis, the biggest emotion one can feel when not celebrating ones good fortune is guilt over ones good fortune.
Now, keep in mind, I was sort of raised this way. I grew up convinced guilt was the opposite of pride, and therefore good. Growing up in a tight anabaptist enclave with a focus on limiting one's exceptionality and otherness for the sake of seamless community, any claiming of privilege was not acceptable. The peaceful brotherhood depended on everyone bowing to the level of the most humble member. If ones brother was poor, no one should appear richer than him. Many sermons against being non-conforming were preached from the pulpit above where I sat each Sunday, my black head scarf perfectly tied under my chin with the tails tucked in just like the rows of black head scarves around me, awash in the greenish light from the stained plexiglass windows of my childhood church. Sermons against conspicuous spending, against ones income being unnecessarily high, against grooming ones self to be prettier than the homeliest sister in the faith. My biggest struggle as an adult constantly playing catch-up with those who went to college and got real jobs in the real world has been to simply be. To live in the moment, stop the constant editing of my image, the constant viewing of myself from others' point of view, the relentless need to discuss my failures lest I appear arrogant, the worry that my successes will reveal to others their failures. In my instilled rejection of anything approaching pride or privilege and apparent attraction toward martyrdom, I still feel so very uncomfortable accepting others' admiration and envy, should it arise.
Granted, my mom's family took these teachings somewhat more seriously than many others in the community. Poverty was seen almost as a virtue, the resulting drawing nearer to God in one's lack of plenty, a blessing. I have literally never lived in a situation in which I am so aware that I am to be envied as I find myself in when surrounded by families more wrecked by childhood illness than we are.
So one day, after thirty two years of these messages swirling around in my head, my toddler gets cancer. Which, upon hearing the words spoken by the oncologist upon his arrival by ambulance at a children's hospital, I realize I have somewhat, on some level, expected since the day he was born so shockingly beautiful and perfect. But it is the best kind of cancer to get. All around me, people have it so much worse and I don't know why Daniel somehow managed to get the "good" kind of cancer. I feel undeserving. I feel as though I survived skydiving without a parachute. As though I somehow got switched with someone else, someone who is now suffering through the horror that was supposed to be me. I was the pauper, now I'm the prince, and have literally no idea how to not work for my supper. I feel as though balance would be restored if I could switch back to how things were supposed to be.
These emotions were expressed by the first words out of my unusually laconic husband's mouth in the emergency room that day. "I'm not surprised", he said. "Why not us? If it happened to my mom, why not my son?"
Does this sound incredibly messed up? It truly does, doesn't it? Just trying to put it into words, I am asking myself what the heck is wrong with me.
So now, with that, we return to the fact that Daniel's prognosis is not as great as I thought during treatment. Now that I have googled it over the course of many late nights, poring over technical journals and rereading until I understand, I realize his slow early response isn't entirely "no big deal". And what I feel is... Goodness, I still can't say it. I can't bring myself to admit that I might feel a tiny amount of relief that the world is as it should be, that we are slightly less fortunate than the very mostest most fortunate of cancer survivors. That if he has a higher chance of relapse than I previously thought, maybe I can finally stop feeling so damned guilty and I can stop downplaying everything he has gone through. Maybe I can finally throw off that stigma of "the good kind of cancer" and have a delayed pearl clutching party. I can accept the $7,000 people have given us to pay our bills this last year as legitimate help for a legitimate need, help that we didn't somehow scam anyone out of. This isn't pretend cancer, or a pretend hardship, and I can stop brushing off every compliment on our strength, stop feeling so incredibly guilty that, as all around us kids seem to be dropping like flies with more horrible diagnoses, we have the very real possibility of seeing Daniel graduate high school. Maybe if we are high risk, maybe that means we all have earned our scars. Maybe we can even allow ourselves to apply to the Make-A-Wish Foundation for Daniel without feeling like posers, or like we are taking advantage of the system. Maybe it wasn't nothing, what we have gone through this year. Maybe having a prognosis that is closer to what is common for childhood cancers will allow us to admit that yes, it truly sucked. Sucks. Is still currently sucking. And yes, we are traumatized as well as thankful. And yes, we needed every bit of help we received.
This post started writing itself in my head as I was visiting with Kaylee's ridiculously freaking badass mom today. I posted about her on Daniel's facebook page, but just a quick run-down here: Kaylee is now terminal. I want to choke on those words, but there it is. She isn't going to make it. Having Kaylee's and Simone's moms in my life has caused a tremendous amount of internal struggle for me as I am forced to acknowledge that for some unfathomable reason, these two moms, and others I have come to know and respect so much, have to let go of their babies while I somehow, through no merit of my own, get to keep mine. I clumsily tried to voice this jumbled mess of guilty emotion to her as Kaylee lay on her lap, her left side again paralyzed as the tumor once again pushes against her brain stem, while she herself sat in a recliner with her broken ankle (from a car accident she and Kaylee were in two weeks ago) propped up while Daniel, healthy, non-paralyzed, non-terminal Daniel drove toy cars on her new bright pink cast. She passionately told me how desperately she wished every one of the kids we both know and love could survive, even if Kaylee couldn't. And I know that two, four, ten broken hearts won't make one broken heart hurt any less. But somehow, I just can't deal with the fact that while we get to walk away from this, we can't take anyone with us. Leave no man behind, right? This is a battlefield we can't carry our fellow wounded warriors off of. We can't take a bullet for them. We can't throw them over our shoulders and run for cover. We can't hold our hands over their wounds to stem their bleeding and tell them they will be fine. All we can do is try to tell them how much we wish this horrible thing hadn't happened to them. As if that isn't obvious. As if there is anything we could say that might make the smallest bit of difference. I'm just not sure how to leave this battle field without feeling so guilty.
I have worked so hard the last thirteen years to drop my baggage that would convince me bad things happen to us as punishments. The very knowledge that got us through the darkest times, repeating to ourselves when alone and dropping the "no big deal" act that we did nothing to specifically deserve an innocent child's suffering, the refusal of the belief that a higher power would indeed punish us for some unnamed (or sometimes very specifically named) sin by smiting our child instead of smiting us directly, this very concept is failing me on the flip side. Suddenly I feel as though I have done very little to deserve his getting better. I tell this pile of baggage it can't have it both ways. If we brought this on Daniel, and he gets better, it would logically follow that we somehow now deserve his survival as well. And on the flip, if we did nothing to bring it on, nothing we can do will make us deserving of his survival, either. (It sits there like baggage does while I talk to it, earless and eyeless, unattended on the airport floor because I'm not claiming it as my own, but also worrisome because maybe it's a bomb.)
Or. Maybe, just throwing this out there, maybe it's all biology and mechanics. Maybe our searching for a superstitious reason for this all is a throwback to when superstition was all we humans had as a reason for the terrifying things, when Pre-B ALL was always terminal, and also, for all we knew, happened when the evil spirits found a way in, causing a child to grow pale and weak and die no matter how much magic smoke was wafting around them.
Maybe it wasn't time for us to get a win, because thinking it was our time would imply that it wasn't Kaylee's family's or Simone's family's time. And we all know that isn't true. If anyone deserves a win, it's them. If love could keep these precious girls here, they would be here forever. Maybe we didn't deserve the year we've had. Maybe we don't deserve to be able to walk away from the year we've had. Maybe I should just get over myself, leave that suspicious pile of baggage for the bomb squad to puzzle over, board a plane and never look back.
So we are. We are having a party tomorrow, to celebrate putting this year behind us. There will be cake, homemade ice cream, friends and family, and a whole lot of feels. No room for guilt or baggage.
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