All the battles

I have had so many conversations with people who are fighting invisible battles lately. A cute little cousin of mine, just a kid, lost his life to his battle yesterday. As surely as cancer threatens our child's life, a less visible mental illness took his, and that is a double tragedy as his loved ones must mourn not only the loss of all he could have been in the future, but all he could have been during his time on earth, as well, and must do so while feeling awkward undercurrents coming from those who do not understand that while their child and sibling fought to live, then in the end, chose to die, the tragedy is the same as if he had fought physical injury or a terminal physical disease. They must struggle with very few people understanding what the true enemy is. There will be those who will blame him for choosing to die, instead of blaming a disease that made that choice seem, to him, like the only one available to him. 

I hear from those fighting invisible illnesses, illnesses of the mind instead of the body, caring for loved ones who fight daily battles against their own minds, that they feel guilty even voicing their struggles to me as I raise a toddler diagnosed with cancer. I always immediately correct them. "Don't you see?" I say. "That is part of the unfair burden you carry. If I fall apart, people blame cancer. If you fall apart, people blame the person you love instead of the illness they have. Nobody judges me for staying with my child who has cancer, like they would you, if they knew how your spouse's or child's mental illness makes you miserable, isolated, afraid for their safety or even your own. I have support available all around me simply for the asking, from practically everybody. You hide your pain because it will only be acknowledged and understood by those who have experienced it. There are no hugs, casseroles, or offers of babysitting, there is only secrecy out of respect for your struggling loved one. This is why you should never say I have it worse than you, because nobody (well, almost nobody) blames me or my child, or judges our family, suggesting we are somehow responsible for the cancer. Cancer is our only enemy, and it is okay to hate cancer without exception. Nobody gets my son's personality or worth confused with the cancer he carries in his body."

If a wife stays with her husband through cancer, people call her an amazing, strong woman. If she stays with a depressed, manic, bipolar, addicted husband, people call her battered. As she very often is. She carries bruises, visible and invisible, and cannot ask anyone for help because help only means one thing to those around her: leaving the situation. She cannot explain to people, without sounding as though she is justifying her own abuse, that she blames the illness, not the person who carries it. That she still loves the person behind it, in spite of the things the illness makes him do. 

And the sad truth is, she probably, usually, should leave, if the illness proves stronger than the treatments for it. She can't love away the mental illness any more than we can love away Daniel's cancer. She can only remove herself and her children so they are not destroyed by the disease as well, because unlike cancer, which is limited to it's victim's own body, mental illness metastasizes to the whole family. And this is where nobody, nobody who cares for someone with mental illness has any right to minimize their own pain in relation to mine. Because I get to give of myself without worrying about enabling. I get to accept my child's whole personality unconditionally without the confusion of separating what is him from what is his disease. (Mostly. I fear for his future mental health after three and a half years of chemo breaching his blood/brain barrier, but that's a bridge we can't cross until we come to it.) I get to feel the love and support radiating from my village, instead of fearing losing my village the moment I admit how bad it is. The worse it gets for me, the more support I have. The worse it gets for them, the less support they have. 

We owe it to those around us struggling with invisible illness to show them the utmost respect. Their worth as humans is not lessened by the disease they carry. Their disease kills just as cancer does. We are all just humans struggling to live amid elements trying to kill us, and sometimes we lose the battle. 

Love to all the fighters fighting all the battles. So much love.

Therapy hack

Hello, dear ones!

It's a hot August day, so I'm hiding in the basement while big is at the neighbors and little is asleep. We played at the splash park for four hours this morning with friends they had not seen for awhile. They were both pretty unable to handle life afterward. 

I called the school district this morning and unenrolled Daniel from preschool. He will be going to school for many, many years. He needs one more year of being little, not to mention every day he mingles with other kids is a potential virus brought home. I'm pretty proud of our seven month hospital-free streak. I also don't expect it to last once winter arrives, and with it, flu season. 

Lately, I've been thinking a lot about why we humans are interested in the things that interest us, why we follow things we do. We value experiences, and while we would never elect to experience some things, we still seek to feel them. Maybe feeling things proves to us our own humanity. 

When we started this journey, I wrote to sort out my feelings. I still do. I decided to not edit or judge my feelings, but to simply record them, and if anyone wanted to feel them with me, they could. There was no reason, in the absence of my own judgement of them, to withhold them from the public. If anyone else wanted to judge them, I decided I was okay with that, and that quite possibly it might even cut through the noise and reveal my true friends. The ones who could also feel feelings, acknowledge them, and move on.

To my surprise, the more honest I was about my feelings, the more my true friends cared. The ugly feelings did not drive anyone away. Being vulnerable did not invite attack. Being real drew out the realness in my realest friends. 

Inevitably, when I start a post in a bad, sad, angry mood, I end it in a much more grateful one. Giving feelings a voice calms them, and seeing them in black and white minimizes their power and reveals their pettiness, and what I am left with is facts aside from emotion- how fortunate we are, how beautiful life is regardless of the hard stuff. Sometimes the most angry ones don't even get finished or shared because halfway through, I realize I don't feel that way after all.  

I write for me. But I edit my grammar, try to rein in my tendency to overuse commas and run-on sentences, polish my style and edit for succinctness for you. Because although my first responsibility is to myself, to hack my own therapy so I can be a functioning mother, spouse, and member of society, I want to give my experiences to you in the hope that the lessons I learn the hard way can be absorbed second-hand. The feelings I work through can illuminate the shared paths of our human experience. The tears turning into crazed laughter can do more than merely entertain, they can allow us to meet each other wherever we are to let you know you are not alone either. Well. And also, we are all living on a spinning rock in the middle of vast empty space, hurtling toward death and a time in which we will no longer have a voice. Adding another honest, vulnerable voice to the global noise, a quiet voice saying, "this is what it was actually like, this life I lived, and nothing came of it as far as great cultural contributions, but every second was experienced and savored, and I knew and was known by people who were good and kind and we created a little pocket of love in the middle of all the hate and violence", that's all I can ask. 

There are two things I hope people say at my funeral. I hope they say I loved unconditionally, vulnerably, and completely, and I hope they say I was unafraid of asking hard questions. I mean, you all are welcome to say I was Mensa-smart, smoking hot, and incredibly talented as well...it is my funeral, after all. Go ahead and lay it on thick, it's your last chance. But since I have no plans on it happening until my husband and I simultaneously die of heart attacks while clutching each other in a roller coaster explosion sometime after our hundredth birthdays, no need to write flattering eulogies just yet. 

In the same vein, I have been thinking about the things I have felt in the last year that I did not feel, or at least felt less, before childhood cancer became our battleground. It doesn't have to be cancer that brings things like this on. But I wonder if I would have thought so much about certain parts of life if it hadn't. Certain things push my buttons now that didn't used to. Certain things make me cry. Certain things give me the sort of joy one cannot hold for long without feeling physical pain. 

For example...

Realizing that in any other time in history, we would be mourning our kid. Just sit with that one for awhile. Think about how very different your day would have been without a person you love, who made you crazy, got on your nerves, then gave you a kiss and let you know you are their whole world as they are yours. And now think back to a day, any day in your shared past after which they would have simply not been a part of your daily life. The stories are everywhere, in footnotes of family trees. So many families lost kids to cancer before the 60's. Fifty years. This is how close we are from a time in which there was no treatment. Fifty years is nothing in the scope of human existence. The tiniest blink in the big picture of time is the only reason Daniel is more right now than a memory of a pale, tiny two year old. He is real, warm, solid. His voice fills the walls of this house, his clothes and toys clutter it, he gets owies and spills orange juice, hits his brother and has fits of giggles over silly surprises because of fifty years of applied research. 

I used to want to push Daniel toward being extraordinary. I wanted him to be gifted. Now, I don't care about gifted. I'll be completely happy with alive. And given the 90% likelihood that he will live with at least one long term side effect of having had over three years of chemotherapy assault on his tiny body and brain, I will always feel this way. I can only hope the rest of the world will remember this as he runs the gauntlet that is puberty, teenagery, young adulthood. I hear so many stories of young survivors being bullied, sometimes to the point of being victims of murder or suicide, because of the physical and mental effects of having fought an adult-sized cancer battle as a child. Right now is my window of opportunity to prepare him, with daily support, security, touch, and joy, for a world that may or may not accept him when he is no longer the adorable, tow headed, pug-nosed imp he is now. When he no longer dissolves into his infectious giggles over things like bubbles, the words "banana", "jelly bean" or "goofball", when silly faces no longer instantly put him in a good mood. When he has grown out of the shiny childhood sparkle he carries now and has begun to withdraw, to figure out who he is and to demand privacy, the world will no longer be his oyster. I fear adulthood for him, when he has to learn, as we all did, he is no longer universally adored by all who meet him. No wonder adolescence is so hard. No wonder it is even harder for kids who had to learn about life's cruelty at a young age. 

I am starting to admit I perhaps have a few not so great side effects myself from this last year. I realized this again the other day when Bobby called me from the store to ask if Huggies diapers were okay, since they were cheaper. I told him they were not. He asked why, and after a bit of hedging, I finally admitted the only thing I had against them was the way they smell when poopy. That was the diaper brand the hospital provided when inpatient, and the smell instantly puts me back there. I told him to buy the Huggies. I would deal. I am trying to deal. There are so many triggers in daily life that just flatten me. Parents who don't appreciate what they have. Parents who guilt their children or punish them without truly investigating the emotions or factors that lead to the behavior they find unacceptable. The fear that I slip into the same thing without realizing it. Any time I hear a truck start up back out of the lawn care business next door, that small panic attack if I am not exactly sure where my babies are at, lest one has somehow escaped the house and is standing behind the truck. Stories of relapses and siblings getting the same disease. I'm not sure which is more debilitating, the guilty fear that I'm stealing the joy from their childhoods by not spending every waking moment practicing perfect patience and modeling the best choices possible, or the dark fear that I'm going to make a mistake that kills one of them. I didn't think this way, or at least I felt it much less, before this last year. I was much more confident in myself and in trusting God, fate and statistics to help us avoid things we couldn't handle. And ironically, it isn't even our own experiences with a cancer that, by comparison with others, is actually quite treatable that has shaken me so deeply, it is having gotten to know so many others with less hope. It is seeing all the ways we are the same, instead of all the ways we are different, that has me realizing just how few promises we have and how we are all only the tiniest mistake, whether in parental judgement or cell replication, from having our lives changed completely and permanently. 

Do I sound like a case study for clinical depression or an anxiety disorder? I feel like I might. I also feel like if we were all completely honest and vulnerable, we would all admit to this to some degree. But when it interferes with daily life, it is time to seek real help, not just pound it all out on the keyboard and post it in the therapy blog for the world to judge. I know this, and I'm not there yet. I don't think I am, anyway. It's up to my nearest and dearest to inform me of the things I'm not seeing or admitting if my life does become too affected by my "stuff". 

The life of a caregiver/parent is one of being angry for your child's sake their life isn't better while also being weak with gratitude it isn't worse. It is one of simultaneously planning a long, happy life for your child and preparing to lose them. It is one of getting bogged down in little everyday stuff in which they push your buttons, get on your last nerve, and make you crazy, while also memorizing every second of your day, in case someday you have to return to the last time you felt normal. It's okay to grieve what you've lost while being thankful for what you have.

I had an unexpected conversation the other day with a woman who, in the blink of an eye, lost her daughter, who was Daniel's age, to senseless violence by the hand of someone she loved and trusted. I saw my own thought processes in her as she sought to sooth my horror at her experience by immediately listing the ways in which it could have been worse. 

Why do we all do this? It is consistent across the wide range of parents we have met who are struggling to make sense of the bizarre world of childhood suffering. "Yes, but mine was gone in an instant and never saw it coming, and if I had had other kids I would have lost them, too", says the mother who lost her child to a car accident, or in the above case, rage and violence. "So much better than watching her fade for months, knowing it was coming". 

"Yes", replies the mother who held her baby through chemotherapy and fading hope, "but I had the luxury of time to do nothing except focus on mine, to try to make every dream come true, to show him nothing but patience and love and hold him as I never would have otherwise, to right every wrong between us and try to move forward without being held back by parenting regrets." 

They both cling hard to "at least they weren't old enough to comprehend it", while the parent of an older child says, "it must be so hard to see a child suffer like the toddlers do when they don't understand why." 

The parents whose kids are disabled say "at least we still have them". The parents who do not still have them say "at least they are no longer suffering". It is as though we cannot ask anyone to drown, even for a moment, in our sorrow. We see them start to flounder, gasping in shock at how cold and deep our pool is, and we immediately reach for them to pull them out because we do not know how they will react and we do not want to think less of them if they do not react well. 

The ones who rarely see horrible things often take the offered hand and climb out quickly, shaking off the clinging droplets of horror with "you are right. You are brave. You are such a positive person. I could never be you. And yes, it could always be worse, so glad you can see it that way". The ones who carry the deep scars of horrible things in their past grasp the offered hand, but stay in the pool for a few moments looking up with no attempt at words. They recover with immediate compassion and the real questions that have nothing to do with the morbid curiosity and attraction to what I call emotional porn- the compulsion to watch other people's lives fall apart in a mix of horror, revulsion, and fascination- that tragedy inevitably ignites in less scarred people. Less "how did it happen? Whose fault was it?" And more "what was her name? What was it like to be his mother? How are you/your other kids/your spouse doing right now? Do you feel understood and supported by those around you? Do you have people you can lean on without reservation? Would you like to drink wine and talk about life sometime?"

And mostly, the person will say they are fine. Which is okay because that is where they are at, unable to find the strength to even open the lid on all the ways they are not, in fact, fine, and everyone has the right to force that lid up on their own terms, or to procrastinate doing it indefinitely. So they crack jokes. The best kind of jokes, dry and dark, wry and shocking, that irreverently jab right into tragedy's gut. They smile because looking happy makes them feel normal and if the outside is happy, sometimes the happy penetrates a good several inches into their skin as well, and lets them forget their bones are still tired and sad.

It isn't as if we humans make these things up on the spot to ease the horror for others. We have them ready because they are the things we cling to, as well. We are positive people. I once listened to a Ted Talk* on the science of happiness, which made the point that we all have our baselines we generally return to. Neither winning the lottery nor becoming paraplegic has a major impact on long term happiness, surprisingly. We are who we are aside from external influences, although those influences do reveal more sharply our inclinations. 

When bad things happen, the best of us is revealed. And the worst of us. And sometimes, when life gets really hard, we decide we just don't have the energy to present ourselves any way besides exactly as we are, and we make the surprising discovery that all the parts we hid because we feared they would render us unloveable are the parts people relate to the most.  But why does it have to be this way? Why do we have to experience tragedy to finally be real? Why can't we all stop making New Years resolutions to be happier, healthier, or to lead more enviable lives, and instead resolve to just be vulnerable instead? 

And on that note, two days later, I have to go make the choice now whether I am going to clean my house or engage with my children. A clean house means I look like I have my life together. Or I could go outside with two tiny boy humans, referee the sand throwing and be their mom, the success of which will never be measured so it feels like a waste of time and energy while the house sits and detracts from my image as well. It's not hard to see why we women feel like we can't be moms until the house is clean. Sometimes I long for our rambling camper life. Since we had no house, the choice was usually obvious. 

* https://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy?language=en

Growing roots on square one

Hi and welcome back! 

Life is still good. We went in for another lumbar puncture this morning. I was more nervous about this one for some undefined reason, but it went fine. Daniel still takes Curious George to the doctor for chemo, then gets his own chemo as an afterthought. Sometimes he wears his own scrubs, surgical cap, proudly carries his own stethoscope around his neck. Sometimes his mom can't find his doctor getup in the chaos that is chemo mornings, trying to get two little boys up and out the door without really waking him, lest he ask to eat something, down the road and to the hospital an hour away (in good traffic) by our appointment time, usually between 7:30 and 8:30 am. I got smart this time and put him to bed completely dressed for the next morning so it would be as simple as scooping him up from his little bed and transferring him to the car in the morning. Wrinkled clothes and bed head are fine on chemo day. 

The timing is usually such that his sedation wears off just as the hospital cafeteria is closing between breakfast and lunch, and leaving the hospital for home by the most direct route, we do not pass any restaurants until a Wendy's halfway home. Although chemo day is often junk food day (don't judge, you try feeding vegetables to a hungry but doesn't want to eat, exhausted, nauseated threenager who has had nothing but propofol sedation and chemo in his system in the last ten hours) by that time we are stressed out by the 80mph/5mph bumper-to-bumper traffic that is midday I-25 and just want to get home, not to mention the 50-50 chance Daniel will throw up whatever he has just eaten, which is more problematic if he eats it in the car. By the time we get home, the parents are exhausted as well, but if we haven't gone out of our way to pick up some carry-out, we make some less than appetizing, baby friendly thing here like scrambled eggs and ground beef (thank goodness for the 1lb bags of grass fed ground freezer beef my mom gave us- we eat far above our grocery budget thanks to her beef and chickens).  

For about a month now, Daniel has had a facial tic, sort of an exaggerated blinking he does with his entire face. We have a referral to a pediatric ophthalmologist to try to figure out if it is neurological or prompted by vision changes, either of which can be caused by the IV chemo he gets every month. Or it could just be that preschool age children often develop tics. He also frequently complains of pain in his right eye. Again, could be normal, could be chemo. It would be naive of us to think he could be systematically poisoned for almost a year and a half now with no long term side effects. It still makes me angry, though. His childhood was supposed to be easy and happy. I was supposed to be able to give him that. It could be so much worse, but it really could be better too, if cancer had left us to screw our kids up on our own terms. 

Speaking of parental screw ups, I made one I am not admitting to Daniel's docs, only to the Internet just now. He takes an antibiotic, sulfamethoxazole-trimethoprim (Septra) two consecutive days every week, twice a day. We were getting it in a suspension in grape flavored syrup. It gave him instant nausea, so I always tried to give it to him at a magical time of day when he had just eaten but wasn't full, and never around the time he took any other meds. Well. I can barely manage a complicated med schedule on a normal day, but add two days of meds at an odd time and I could never remember to give him all four doses. Sometimes, because the liquid couldn't go in his weekly pill organizer cups I didn't remember to give even a single dose. I figured, his counts are always high. Pneumocystis Pneumonia is a concern with low counts. If we miss half his doses, it's not ideal, but it is better than missing his oral chemo. This has been going on since he entered maintenance. Well. Since before then as well, but the Septra negligence has been extra bad since starting maintenance. 

Last month, I gathered by inference on an Internet leukemia board that Septra suppresses white blood cells. The same blood counts that have been too high ever since entering Maintenance. I had no idea. Nobody in a year and a half of treatment mentioned to me that in addition to being a protective antibiotic when white blood cells are suppressed, it helps suppress them. I freaked out a little. I also called and asked his docs if we could try swallowing it in its giant, powdery pill form, in case it was the grape syrup upsetting his stomach every time instead of the actual antibiotic. I religiously gave him every dose for a month. He seemed to do better with the pills. He didn't like them, but he got them choked down and never threw one up. And sure e-freakin-nough, if his ANC count wasn't right at the bottom end of ideal this time. Son of a crispy biscuit. 

Turns out my breastfeeding him at night wasn't what was sabotaging him after all. The methotrexate and 6mp are doing their job. It wasn't the milk, and all those nights of crying as I made him wait longer than the recommended minimum of two hours, trying to give the 6mp all the time it needed to work in his body before I added breastmilk with it's oxidase enzymes stopping the action of the 6mp, that was all just wasted time we could have been nursing and sleeping. It was me not giving him all his meds that was the culprit. So I felt like a pretty stellar medical parent-caregiver. 

My own struggle lately is with the breastfeeding. Well. Not so much the act as the frequency with which it is demanded. It has taken a while to get here, but I am over it. My hormones are telling me it is time to get these two off me, probably because it has decided it is time to make another baby. My brain, of course, slaps my body into the middle of next week for even suggesting such a thing. But as Daniel's knowledge and observations about the world around him increase, so does his need to anchor himself to the most comforting, stable constant in his life- me and my body. Not to mention Alex has been cutting his first molars for what seems like forever, turning him into a little barnacle, attached to his mommy and in constant need of nursing. I do not feel like I can take away the comfort of breastfeeding from either of them right now. Nor am I willing to take away the immune support and gut-healing properties from Daniel, who does not struggle right now with treatment related digestive maladies as do many of his little treatment buddies, and as I am afraid he would if 40% of his diet were not breastmilk. I also can't shake the timing of Daniel's diagnosis. Was it coincidence that his cancer took over his body within a month of my milk drying up during pregnancy? Through this journey, I have met multiple mothers who say the same thing- a month after weaning, bam. Cancer. Yes, it was inevitable. But perhaps breastfeeding somehow kept it in check until they were older and more able to fight. Because leukemia seems to be a genetic disease with environmental triggers, Alex has a greater than average chance of getting it as well. I can't shake the fear that if this timing hypothesis has some truth to it, I would do well to let both Alex and Daniel nurse until they decide on their own to stop. But I want to stop. Right now, every time they ask to nurse I have to take a moment to mentally prepare myself. It feels vampiric. I feel a violated by it. Everyone says, if it isn't working for you, stop. Yeah. Not so simple in practice. Come to think of it, everything about parenting could probably be summed up in those five words: not so simple in practice. And not just parenting. Life.

In the meantime, it is hot. The dog days are here. We are estivating. (New word I learned yesterday and really needed to find a way to use it. Estivate: when a species goes dormant during the hot, dry portions of the year. As opposed to hibernate, a very different metabolic process in which a species goes dormant during the coldest months.) Every winter, as the cold settles into my bones and I pile layers of sweaters and blankets on me to preserve what tiny bit of warmth they still possess, I think the heat can't possibly be so bad. Then mid-June until early September rolls around and we realize we have no desire to venture outside during the day. Daniel's drugs make him sensitive to both sun and heat, causing him to quickly become flushed and covered in rash. Commercial sunblocks make the rash worse, so I ordered a bunch of fancy natural oils, butters and zinc powder online and make our own sun lotion, which we pair with wide brimmed hats and long sleeves whenever he heads outside. It's still no fun. I will hate myself for saying this when the winter sky is hanging low, winter wind is howling, winter cold is impossible to chase out of our house without spending more on our heating bill than we are willing to, but can we have a little less heat, please?

We spent last weekend in Summit County to celebrate Bobby having been gone working in Kansas for a month, and this month's budget being met with a little to spare. We spent two days biking, swimming, splashing in mountain streams in the shade under tall pine trees, and it was wonderful. We wondered if we should move back up there. Of course, summer is only three months long there, but quite honestly that is about all of summer we can use here, before the heat chases us back inside. At least there, every day is useable. And we could find work more easily there through the winter. I don't know that it's a serious consideration because housing is as tight there as it is here, but as this transition period in our lives stretches to an unpredicted length of time, our imaginings get more and more creative. We have made some amazing friends here, but as far as place goes we are as at home here as we have been anywhere else, which is to say, not hating it but not particularly attached to it either. Home is the part of our lives we take with us- each other, kids, dog, quilts, kitchen table, recliners and couches that are comforting and familiar no matter what walls surround them. Although I will say it usually takes me the better part of a year in a new home before I stop actively mourning all I left behind in the old one, be it friends, favorite haunts, trails my feet have memorized, or comfort foods in out of the way restaurants. 

In a way, I wonder if Loveland still is, to me, what happened here. We didn't move here for an easier life, and it didn't disappoint. I spent six months alone in a small, unfamiliar house while B worked 100+ hours a week, and as hard as I tried to find the places other moms hung out, when I did they seemed not terribly eager to be friends. I can't blame them. One is never too eager to make a new best friend of a woman about to have her life turned upside down by a new baby. You can't ask the hugely pregnant one to meet for drinks, or really anything else really, especially if she has nobody to leave the toddler with. And all the rules change when the baby is born. A formerly down-for-a-good-time mom becomes an uptight, tearful, lactating, sleep deprived hostage to every whim of a floppy, eight pound human. I did finally find a group of smart, drama-averse moms on a Meetup group, went to exactly one play date, planned on going back, then the baby was born and cancer happened and by the time I went back, I felt like even more of a pariah. But they hugged and welcomed and didn't seem too weirded out by the many factors that made us weird and pathetic, and most of my friendships here have stemmed from that group. 

Life is still hard here, as it is anywhere. It is easier as far as loneliness, baby, and cancer are concerned. But we no longer have a steady paycheck, and that is stressful. We keep circling around in our reasoning and our planning when thinking about our future. Our problem is, we are at such a pivotal place right now, a seminal moment, and we are terrified to rush into any direction from here that might preclude other directions. 

We know if we get 9-5 jobs, five days a week with weekends off, predictable schedules, predictable days, predictable incomes, in a year or two we will find ourselves in the midst of yet another existential crisis. It happens every single time we get a "real" job. Unpredictability is our jam. We fly by the seat of our pants, and it is often stressful to do so, but when we decide to plan our future we immediately feel like hostages to our own determined trajectory. So for six months now, we have talked, discussed, debated, weighed options and possibilities. 

Long past the point when normal people would have simply filled out an application to drive a garbage truck, deliver the mail, stock shelves at Home Depot, we are taking odd jobs here and there to pay the bills, trying to not touch our small savings account we have earmarked for future business startup, wishing there was some way to turn "odd jobbing" into a career. Which, there is. But when you are the boss, you are also responsible to keep the odd jobs coming in. Which means you are a marketing manager as well as odd jobber. 

There is no perfect scenario. We have to decide which imperfect scenario involving a lot of hard work and commitment we most want to invest our energy and time in. So here we are, stuck in analysis paralysis. Anywhere within an hour and a half of Children's Hospital with in-network local healthcare providers is an option for us. We can get more than enough rental income from this house to cover our mortgage, and could apply the extra money toward renting another house somewhere else, if somewhere else is where we want to build our future.

It is a weird, wonderful, terrifying, stressful feeling being at square one. We have always been on a trajectory before. For the first time in our lives, our forward momentum has stalled. The moment we take a first step, that step will necessarily be in a direction. Second, third, fourth steps build momentum. Very few people get the opportunity we have right now. Only a few get to decide, as adults, which direction they want to build future momentum. This is our moment to set into motion events that will compound in the future, opening some doors, closing others. Right now every possibility is ours. The moment we step off the plate, certain possibilities will become unavailable to us. So we raise a foot to step, and we hesitate. We want this to be it. We want whatever direction we step to be one that leads resolutely forward, not one that runs into a dead end and dumps us back on square one. Once we leave square one, we want to never return. And we want to never want to return. We want whichever direction we start off in to be the one that positively shapes our lives, defines our boys' childhoods, influences the adults they become, determines how we spend our sunset years. Right now, on square one, we stand with one foot up, ready to step, and we just can't do it because we just don't know if we are enamored enough with any direction to be ready to fight for it as we know we will need to once that foot hits the ground.

So there's that. Eventually our supporting leg will buckle and we'll stumble off square one without having actually chosen which direction to go. I'd like to think before that happens we will have broken out of our pause and made a decision. But for now, B has at least three weeks of odd jobs lined up here, more in Kansas if he needs them to fill some gaps, we're not going backwards any more than we are going forward, so we've moved some furniture onto square one and made ourselves comfortable. May as well do something while we are doing nothing.

As a quick little footnote, I've decided to "scrub" a lot of Daniel's online presence, at least that of him where he is obviously sick. I deleted his Facebook page because I feel like we no longer need it for updates that are too quick for this blog. I set it up so strangers would not need to be my personal Facebook friend to follow his progress, which would allow me to be less concerned with privacy and being too revealing on my own Facebook account, but now that we are in maintenance, it is a bigger concern to me to just let him be normal and little and to maintain his privacy boundaries for him until he is old enough to set his own parameters. Maybe one of these days I'll get around to editing the pics on this blog, either blurring, watermarking, or removing. 

Cancer is a big opportunity to use people's emotions to open their pocketbooks, unfortunately. I never want to see a pathetic looking bald kid being used on a strangers gofundme, only to recognize Daniel's face. It happens. Surprisingly often. He deserves to beat cancer, not be exploited as someone else's made up story for attention or money. I am trying to not post pics in which he can be easily recognized, and none in which he looks too sick. It has been a surprise to me how many people want to follow sick kids, and a little scary, to be honest. 

And on that note, we're off to bed. I started this post five days ago, we are now on day five of prednisone, which means Daniel has zero impulse control, a raging appetite, is a regular bully to his little brother, and is already starting to look puffy in his tummy and face. Good thing it's done for another month after tonight's dose. 

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. 

Best of times

Welcome back! 

We had our party. It was cold and wet, but the rain held off. Bobby bought plastic sheeting to stick to the carpet traffic areas and a fire pit for the backyard. Godparents Leroy and Mary drove nine hours, the boys' grandparents, Aunt Marci, Uncle Jay and Aunt Wendy and cousins Ariel and Ahna drove five hours to be here, and we had a noisy, busy weekend, topped off by the actual party to which we invited friends and neighbors for cake, ice cream, smoked meat sandwiches and potato salad. It felt like it accomplished what it was supposed to. A period at the end of the insanely long run-on sentence that was our last year. In the whole course of treatment it was only a comma, but it closed the book on the stress and uncertainty that was 2015. Alex, who was a tiny newborn last April, toddled around shrieking with excitement and begging for food, much like his Golden Retriever role model Andy. Kids played on the swing set and in the sand box, in spite of the chill. Later that night, the wind died down and the remaining partiers sat around the fire and relaxed. We did a lot of contrasting the happy chaos to the chaos of a year ago. Aside from being the year Alex joined our family, 2015 did us no great favors. It set us back by a lot, financially and psychologically, and we're glad to see it in our rear view.

It's a new day. Maybe I'm feeling particularly upbeat today because the sun is finally shining after having been hidden for over a week, but it is hard to feel too down when it is finally spring, everything is green, and two little boys are energetically, systematically destroying the place. 

I read some meme on Facebook the other day, I think it was some marketing thing for somebody's home based network marketing business, that said "In five years, if you were exactly where you are now, would you be happy?" The insinuation being to get out and change, work hard, succeed! But I couldn't help but think, YES. If we are where we are now, we should be so lucky. We have a home. Filled with a family. Nobody is deathly sick, paralyzed, or dead. Aside from the mother B lost to cancer when he was seven years old, we have all of our parents, all of our siblings, all of our kids. We are not in mourning. The one thing that is certain in life is loss. It is coming. Which one of us will go next is impossible to tell, but it isn't morbid, it is just stating a fact to say we will not always all be together. 

Alex has been almost an afterthought this last year, jostled and juggled around, thrown on my back in the carrier and forgotten about, expected to eat and sleep and poop his pants no matter where he was. He has been unceremoniously dragged along everywhere we have gone, and the only times he gave us any huge problems was the occasions in which he could not breathe due to croup. Like that one time he had to be admitted. Pretty uncool of him.

Now he is a one year old with a shocking collection of emotions, which he pulls out willy-nilly with no thought as to context. He is constantly sloppily expressing himself, big tears, loud wailing, theatrically collapsing and dissolving into heartbroken sobs one moment, nearly choking on hysterical giggles the next. Big slobbery kisses are his jam. Hugs and snuggles, then arching away, stiff as a board, nearly impossible to hold onto as something else catches his attention. Daniel does not yet realize he is the object of a one year old's hero worship, but he does notice Alex imitating him sometimes and hams it up for him. Today, I noticed both of them sitting side by side (pantsless) on the back patio, wildly jerking their arms back and forth, shrieking and giggling as Daniel yelled, "Whoa boat! Down tweam!" His class must have sung "Row, Row, Row Your Boat" this morning in preschool. 

It is all so sweet, so happy, so bright I can hardly look at it. Sure, there are temper tantrums. Food all over the floor. Broken furniture. Sand in the bedsheets. Laundry that apparently reproduces while my back is turned and some serious funk hanging around the diaper pail. But there are also little soprano voices calling "Mommy!" For the smallest of reasons. Slippery little bodies in the bathtub. Chubby thighs. Tan little faces thatched with tousled blonde hair. Big blue eyes that watch my every move. Filthy, sticky little hands wrapped in my hair. It is all so fleeting. Suddenly Alex is getting big and fun, no longer a helpless baby but a real person with a real personality. Suddenly I'm looking forward to having kids who can legitimately hang. Ride bikes, go on hikes, swim, all the stuff that big kids do. It is suddenly very clear to me that I do not want more kids. I want to use both of my exactly two hands to hold exactly one of each of their hands and show them wonderful things. Like the baby turtle, no bigger than a quarter, that we found on the bike path beside a pond last week. We carried it to the edge of the water and watched it ease into the water and moss, and I got to see Daniel's absorbed, delighted grin as it crawled across the palm of his hand.

These moments. These moments right now. How can I preserve them? How will I ever have enough of them if I need to return in the future to the last time I was happy? It is terrifying being so effortlessly happy. When will it change? Who of us will life happen to next? How can I do and live and feel it all so I have no regrets? How can I remember how beautiful this time is in the moments when both of them are screaming, I'm trying to cook dinner, the dog is barking, I have a headache, and I forget myself and yell, ironically, for quiet? When I use a harsh tone and Daniel's happy face falls, when I grab his arm a little too roughly when he is being aggressive with Andy or Alex and he looks up at me shocked, when I yell at him for being three years old and challenging, will these times be what I remember? I hope not. I hope I can remember that now is the time to create happy memories and not stain them by taking them for granted, for not letting the small annoying things overtake the big happy things.

These are the best of times. 

Hard times, come again no more.

Baggage Begone

Hello, and welcome back! It's pretty much a case of no news is good news here. It's hard to believe we have just started month number five of maintenance. Four spinal taps, five doses of IV vincristine, five steroid pulses (the last of which we are still experiencing the mood and appetite effects of), five months of setting my alarm and waking Daniel up in the middle of the night to cry and fight taking his oral chemo every. single. night. But hey! Only 829 nights of interrupted sleep left! Not sure how we're going to celebrate, but probably not by staying up late. We have 829 days to plan the perfect night's sleep. Oh, who are we kidding. We're parents. We traded sleep for these little packages of awesome wrapped in warm pink skin and footie jammies.

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.