Choosing joy

Sometimes we realize our kid surviving something that should have killed him, would have killed him a few generations ago, means we live between two worlds. 

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. 

Other people's kids

In the hospital village, there is no such thing as "other people's kids". There are other people's lives and hearts more wrapped up in every breath a particular child takes, but someone else's problem? No. One kid's pain keeps us all awake at night.

We might not all admit it, but we've all sat on hard chairs or couches in the dark, looking out across a city from a high hospital room window, and thought about the worst case scenario. We've imagined that bed, the one holding the tiny, warm body, suddenly empty. We've imagined going home to a house full of toys, books, small clothes, but in each room, where a child should be, has been, they aren't. The thought is so horrifying, the emotions so gutting, we stuff them down into a box and slam the lid, then rush to the bed to watch a tiny chest rise and fall, to gently lay a hand on that chest to feel the reassuring cadence of a tiny heartbeat, the warmth of a living child, and we exhale, slowly calming ourselves, because the future might hold something terrible, but we can't know if or when, and right here, right now, we are still whole. We try to memorize what this wholeness feels like, lest someday we are left with only shattered pieces of it. (We also get really weird about things like wiping sticky little handprints off patio doors, just in case the worst should happen. Weird as in, we try to keep them wiped up immediately because we know if the worst should happen, afterward we will never be able to wipe away such real, messy proof of their existence.    ...Well. Maybe not all of us. I have a friend who has gotten all weird like that.     ....Alright! Fine. The friend is me. I'm kind of in a weird place, okay?) 

There are parents like us who have as many assurances as can realistically be given that this may alter our child, but probably not kill them. Then there are many parents fully expecting their child to be altered, hearing loss, stunted growth, learning disabilities, and they will take it all if it comes with an alive child. But even they refuse to cross bridges they haven't come to. Life means hope. The terrible possibilities are still in the future, and in the moment, they are still whole. 

What happens when the moment ends? 

Just...everything stops but the clock's hands keep moving? Moments that were loud and happy become...not? Beds are just...empty? How can one suddenly stop doing what they have done at 200%, lived, breathed and bled, for a year or more? To have a baby was a big adjustment, but we all made it, joyfully. And now, to go back to living as a couple, or with one fewer children...how? This little life that started with dreams and laughter, then fades into memories, how can it end like this? It would be a lie to say I haven't imagined what would happen if it were to be our turn next. Would we cling to everything Daniel has ever worn or played with, or would we run to a new house in a new town, somewhere the memories would not burn our skin each time we touched something he loved? I know us well enough to think we are the running type. But still, how do you leave the last place you were whole? How do you clean out a bedroom that won't be set up again? (Okay, full disclosure, my friend is also weird about moving her child into his own room for this reason. Don't judge. She knows she has stuff, and will have to face it some day. Probably much sooner than she wishes.) On the other hand, how do you stay when the wholeness is gone? 

 

In the thick of it, when everybody was fighting and gaining on their personal battles, when all but the most inaccessible tumors were responding to aggressive frontline treatment, there were sick kids but optimistic parents. Now we are to the point in treatment where a lot of our "hospital family" are home, some completely done with treatment with all options exhausted, just hoping they annihilated the cancer and it isn't growing again, unseen, and some like us- doing years of maintenance therapy to keep the high risk of relapse down. And now is when the nightmares can come true, when relapses start happening. 

Today in a church in Longmont, a tiny, polished white box holds an impossibly small toddler named Kaylee Sue. She wears pink and lace, two little elastic hair ties around her birdlike wrist, little pieces of jewelry she would be delighted by if her closed eyes could just open, her new dark hair lies close to her head and barely falls over her forehead. She is beautiful. Absolute porcelain perfection. 

Every dream or scenario imagined for her future lies in that box with her. Playgrounds, winter sledding, summer swimming, slumber parties and truth or dare, bikes, pets, first days of school, last days of school. First crushes. First loves. Broken hearts. Prom dresses. Learner's permit. College applications. 

It isn't just a box holding a child as delicate as the pink lilies above her. It is holding every future moment stolen from her and her parents. Every experience they will go on to have, they will long for the chance to share it with her, but when they reach for her hand, she won't be there.

She joined her best friend, her mirror opposite, a little girl named Brenna in the mystery that is death. Incredibly, they shared the same exact rare diagnosis, at the same time at the same place. Brenna's treatment ended first, her tumor returned first, her heart stopped beating first. Two little boxes full of dreams. 

Another little girl named Simone went before them, one day a fighter, the next, dreams that dried up and blew away. Three complete sets of dreams, enough love to change the world. What happens to all that love when the person it was meant for isn't here? When I think of all the wasted hugs, kisses, and joy, I try to give them to Daniel and Alex and wish them on all the kids who are still here. But it doesn't change the fact that three little girls, and so many more should be growing up before their parents' eyes, and instead, they just stopped. Everything stopped.

It keeps happening. It just keeps happening. While adult health issues attract huge money, families of children with life-threatening or life-ending illnesses bake cookies, hold community fundraisers, organize foot races and bike rides, giving their own money and hard-raised pennies to doctors with promising research, just hoping that these doctors can find answers in their small, underfunded labs, knowing full well that if answers are found, they will be found too late to help their own children. But to them, there is no such thing as "other people's kids". Their own kids die, and they have to comfort themselves by saying things like "she helped get us all a little closer to a cure."

And the hardest to accept part is, they are right. Daniel is lying on my lap right now, drenched in sweat, having cried, nursed, and fought himself to sleep the way only a spectacularly alive three year old in a steroid-induced rage can do. The two of us, in this sticky, soggy bonus moment we would not have had sixty years ago, one year past diagnosis, are sitting on what amounts to massive piles of polished little boxes and urns filled with the bodies of kids who did not survive. Without them, he would not have lasted more than a few weeks beyond April 22 of last year. Every moment we share with him, every time I reach behind me and, by some blessed miracle, his little hand slips into mine or pushes mine away in a display of stubborn independence, every lilting question or exaggerated accusation that comes from his three year old mouth, these were all a gift to us from so many families who placed a lifetime of dreams into a box with a tiny body and closed the lid. 

It has to change. Something has to change. Since it is not my child in that little white box today, I have the luxury of anger. Anger fled last night when I stood in front of that perfect little human sleeping in her pink and lace under a big pile of pink flowers; all the angry, fearful voices in my head and heart went silent. A more gentle, more profound sadness seeped into the silent space inside me. It shouldn't be this way, whispered the only voice left. It can't have come to this.

Later, the silence was again filled with clamor. The anger returned. I took my babies to the lakeshore and let their excited shrieks and giggles, the water and sand soothe me. I did a lot of memorizing this morning. The sounds of their laughter and babbling, mispronounced words, the grip of their fingers in mine, the slap of their little flat feet in the foam at the water's edge. I felt their infectious joy wash over me, and tried to memorize how it feels to be whole.