When we look one direction, we see all the privilege around us, all the normal healthy kids doing normal healthy kid things, with families who assume getting to grow up is some sort of basic human right. We remember how that was once us.
When we look that way, we feel anger and despair, resentment that we no longer live such a comfortable life. We feel trampled on.
Then we look the other way. Parents are grieving their kids after having planned on them growing up. We look further. Overseas to places where war and conflict is an ingredient in daily life. Where parents love children who have zero assurances of growing up. They protect them with their bodies. They pay their life's savings for a bag of flour to feed them one more week. Some literally sell kidneys for enough money to give them life.
Looking that direction makes me feel like a weak, entitled idiot. Who says I had any sort of right to expect a lifetime with those I love? That seems like a modern concept borne of peacetime and scientific advance.
Graveyards are full of tiny headstones from a pre-vaccine, pre-antibiotic, pre-chemotherapy era. Nowadays, the assumption by parents is that once a kid pops out of the womb, they are pretty much home free. Other than a tragic accident, or a rare disease modern medicine has not yet cracked, we think we somehow deserve for life to be easy since we have either tamed or shackled nature, and no longer remember nature is cruel.
Maybe someday it will be easy for all of us, not just us soft first world inhabitants with our air conditioning and evidence based medicine. Maybe someday religious conflicts will die down, drug wars will be abandoned, racial differences won't be inflammatory. Diseases killing our kids will get the horror they deserve. But right now, there are so many kids drowning as they flee from man's inhumanity, being pulled from the rubble of buildings leveled by hate, and when looking in that direction, all I can feel is gratitude for a somewhat manageable problem like cancer. Cancer isn't emotionally complicated. Cancer is bad in a way humans being inhumane to each other aren't. It is okay to hate cancer unequivocally, because nobody has to wonder what abuse or misinformation in cancer's past made cancer so eager to kill.
Daniel fought so hard against an invisible demon this past year, and will continue to fight it. Sometimes it feels like the demon is relentless, armored, breathes fire, and carries a machine gun while we are exposed, squishy, and armed with...I dunno...slingshots filled with gummy bears? And who knows, it may attack again when we are least prepared to fight it. But also, he could have, would have died very shortly after April 22 of last year if not for us taking advantage of knowledge, science and technology not available to or even dreamed of by any generation before the mid 20th century.
Of course we want more. Better treatments. Fewer side effects. So many exciting advances in gene editing technology hint that in the future, chemotherapy as we know it today may become hideous and obsolete. The same forces responsible for such widespread global suffering are also working to stop such scientific advance. This infuriates me as I look at the kids who could gain their whole lives, lives full of screw-ups and hardship and wonder and love, instead of filling a little box or urn with broken dreams and the carbon that once made up the cells that held their aliveness.
But also, when I realize our dreams are bruised but not broken, that my own kid's carbon is infused with energy and life, and that we are a year past the date by which his life almost certainly would have left his body, considering how few blood cells he had left in it last April, I feel breathless with gratitude that he got a bonus year. A whole year. A year in which I kissed him every single day. Every day of that year, I held his warm, alive body. I heard his voice. I looked into his seafoam colored eyes and memorized the lines and flecks and tried to keep him from throwing toys at his brother's head.
When that is the direction I face, nothing is too hard. It's all small stuff.
He now has two birthdays. We celebrate the day he came to us, and the day he started the fight to stay with us. We got something some parents would give anything for. We got a year.
Will my internal compass turn again to how much better it could be? Definitely. I'm a whiny, entitled brat more often than not. But I hope when it does, someone can gently spin me around and remind me that we were never promised what we already got.
If our second bonus year with him ends early and another one doesn't come, it will be a whole other process to find this level of acceptance I'm finally arriving at now after having watched him fight so hard for his future.
Mostly, I think I'm a slow learner. He was our rainbow baby after two false starts led to us asking ourselves if we might be okay if we were never able to have a baby. When it turned out to be as simple as hormone support through pregnancy, his very existence was a bonus given to us by modern medicine. So I bargained. If I were grateful enough for him and his health, I reasoned, that might act as a deterrent to terrible things happening to him. That didn't exactly work out as planned. But if I do the same thing the second time around, it can't possibly fail, right?
Thanks to a teaching moment on our camping trip to Moab, Daniel knows the moon isn't actually a face. Also, the man in the moon's name is "Paodaya". I didn't actually expect a three year old to grasp the concept of pareidolia (our human tendency to see patterns, like faces instead of lunar craters, or all the totally obvious ways a kid's parents might have caused or deserved him getting cancer). I know I should stop looking for patterns on which to base silly superstitions. I know I can't actually convey some protective power to him using excessive gratitude. There is no pattern here. It's as ridiculous as the moon having a face. There is no reason to think Alex is safe because we paid our dues with Daniel. I have no promises that as long as I enjoy every bonus moment, it won't end. If it ends, I didn't deserve bad things because I failed to be happy or grateful enough. Things just happen. I know the important part is figuring out how to adjust ones course after they have happened so they don't become an anchor keeping one from moving forward in the pursuit of happiness. But it doesn't stop me from being weird about it and grasping for anything that helps the world make more sense.
Or I can keep looking at the suffering around me and remember that yeah, we are blowing through our savings right now to keep our roof over our heads, and I'm sitting for an hour with a giant needle dangling out of my arm vein twice a week as I sell my plasma so we don't have to do the same with groceries, but plasma isn't a kidney. At least we have that option. (Please don't be shocked or horrified or feel sorry for us or think this is a cry for help... We've had feasts and we've had famines. This is the latter. But we're still floating. I'd tell you if we weren't.) As he fights to start our business here, B has the option and ability to work out of town if needed to pay our bills, as he is doing at the moment. We are a two-adult household, so one of us can work while the other raises kids. The only problems over here are minor ones- mortgage payments, monthly chemo treatments, resulting steroid induced personality changes.
Not to mention kids get cancer at roughly the same rate the world over. Children's hospitals are being bombed "over there". Chemo with a side of breaking glass and falling plaster. Dealing with poverty in addition to cancer, patients are going untreated, or treated with unregulated or even counterfeit drugs. It's all perspective. We are so incredibly privileged. I hope I can always remember that.
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