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.

Adventures in Oz

Hello and welcome back! We are on an extended "vacation" in Western Kansas right now, doing all the long-deferred jobs we have not been able to come back to do with Daniel sick and us needing to stay close to Children's. Of course, if he should start running a fever, we would have to go into the local two-bay emergency room for evaluation and bloodwork, but the odds of a fever indicating a life-threatening infection are much lower now that his ANC seems to be hovering around 1,000. 

Every day for the last two weeks, I have juggled deep cleaning projects and childcare. A few of those days I crept dangerously close to losing my mind, as I tried to work toward goals with kids hanging off of me. Grandpa Kevin and Grandma Sandi have juggled full time jobs and helping me with childcare, which is the only reason I have accomplished anything these last two weeks. But by now, my mom's house is cleaner and more organized, and the farmhouse is getting closer every day to being cleaned out, repaired, and ready for the family to make a decision on its future- whether they will sell it, rent it, or come up with some other great plan concerning it. 

The place is massive and daunting, a six bedroom ranch house with three bathrooms and two kitchens, perfect for someone with a lot of energy to make a living out of. But it is also in need of some TLC. I remember how much I loved moving into our camper for the summer of 2014 after being used to keeping up with this place. In the camper everything I needed was practically within arm's reach. In this house, it feels like one walks miles every day just retrieving the many small items one needs. I walk to the kitchen to make lunch, then someone starts crying somewhere, so I run to the other end of the house to deal with them. Then I need something in the basement, so I go down there. I am out of breath by the time I get back to the kitchen. Then I realize I have a hangnail, so I pack my bags, eat a snack, grab a piece of chalk to mark the walls so I can find my way back, and begin the long journey through the house to retrieve a fingernail clipper. Just the act of getting a drink of water from the kitchen requires pre-trip hydration if one is in a bedroom. It is an excellent house for a big family. It begs for the sort of family my grandparents raised in it- a revolving door of intentional family, in addition to biological family.

 When I am down in this valley, where on calm days the silence is deafening in the absence of the constant city din I have stopped hearing at home, I realize again how it happened that, when we lived here, three years just slid past unnoticed. Then, of course, there are days like Tuesday, when the wind blew 40mph, the sky turned a dirty shade of grayge, the windows rattled and moaned, and dust settled on all the freshly cleaned surfaces in the house. I miss Kansas, but I also feel conflicted, because something about being in western Kansas feels tiring to me. B and I have been discussing this thing we call the Kansas phenomenon. It seems like we feel unusually tired here. Maybe it is that we have been working so hard, or that the bed is unfamiliar, but ever since we got here we have felt a like our energy is gone. My theory is that perhaps we just don't realize we have allergies, maybe they don't present with a stuffy nose, just exhaustion and inflammation. But it isn't a new observation. It seems to hit us hard every time we come out here. My other theory is that the sudden cessation of din and bustle just reveals to us the full extent of our exhaustion. Maybe we are generally too busy to realize how absolutely weary we are until everything stops, and then we grind to a stop, too. 

Everyone comments on how healthy Daniel looks. He does look and act amazingly healthy. They ask how he is doing. This is a hard question to answer with leukemia. He has technically been in remission for over ten months- since day 29 of his treatment. If he hadn't been, it would have been unusual. Almost everyone hits remission with the intense month of induction. His body was pushed to its limit, and the cancer was pushed back to almost nonexistent. (The "almost" part is what makes him high risk.) All of his current issues are treatment related. 

He stumbles and falls a lot. But so do some kids who aren't on treatment. I think it is because he is on a chemo drug (vincristine) that is known to cause nerve damage, with numbness, tingling or pain in hands and feet. He fell against a hot stove burner a few months ago, catching himself with the heel of his hand, and barely cried. That freaked me out. But kids who aren't on chemo fall a lot because they are kids. And kids who don't have neuropathy in their hand and feet are stoic. So maybe he is just a stoic, flat-footed little boy. Or maybe he also has treatment induced numbness and nerve damage.

He randomly refuses to eat foods he generally loves. Methotrexate is known to cause a metallic taste in the mouth, and to change the flavors of foods. Sometimes he seems to have a better appetite just before his next weekly dose. But also, kids who don't take oral chemo drugs randomly refuse to eat things they usually love. So maybe he just has a normal picky toddler palate. But he seems to be extra hard to please after his Friday methotrexate until about Wednesday. So maybe he also has drug-induced nausea and taste changes.

To me, his tummy looks extra distended all the time. Corticosteroids cause extra production of cortisol that creates belly fat. Also, his liver and spleen were quite enlarged when he was first diagnosed, although they have gone down by now. I see this shape in other kids with his diagnosis, but I've never asked about it. 

He sometimes just randomly throws up. He seems as surprised as I am when it happens. He is eating, then suddenly he stops, turns green, and hurls in his plate. I don't know why. 

We won't have a chemo break to see which things stop affecting him when the chemo stops for two and a half years. Maybe he is actually a high-energy kid, but it has been so long since he was just a normal kid, we don't really remember. Maybe he would be totally different, but now he constantly feels tired from his meds, although neither he nor we will know that because there will be no breaks. 

But he is turning into a normal kid, doing normal kid things, with rosy cheeks and hair that resembles a buzz cut. He's not a "cancer kid" anymore, not to strangers or casual acquaintances. His disease is becoming invisible. Because he is looking healthy and hairy, people are starting to treat him like a normal kid with a normal immune system. I love the way nobody stares at him anymore, but I miss the way everyone kept their distance, clued in by his shiny skull that he had a compromised immune system. 

Whenever someone asks him how he is doing, he replies with an enthusiastic "gweat!" And he is great. Now that he is so incredibly gweat, am I beginning to grasp how absolutely devastating a relapse would be, now that we are getting back to a life not completely dictated by cancer. When we were in the thick of things and had forgotten what it was like to not live in constant drama, making frequent emergency room visits, dealing with inpatient stays and germ paranoia, a relapse just seemed like a discouraging extending of our current visit to cancer land. But now that time is fading in our rear view mirror. The more time passes between then and the present, the less prepared we are to go back. It would be as devastating as a fresh diagnosis, but without the benefit of ignorance and with decreased odds of survival. When we were in the thick of it, the thought of relapse was exhausting, but just more of the same. Now it is a truly colossal truckload of nope. 

That is the thing with cancer. You are great. You feel good, you look good, you deal with the side effects of treatment and try to be normal. This either continues for you indefinitely, or one morning as you are brushing your teeth, a cell experiences an error in replication and becomes immortal. Several months later, your body is full of useless but immortal cells. You start running a fever because your immune system is useless, and if none of the blasts make it into a blood sample, everyone tells you your counts are crashed but it's probably just a virus. Five weeks later, they finally acknowledge the dread that has been haunting you this whole time, and order a bone marrow biopsy. And with the results, your whole world crashes in on you. Again. Even harder than the first time, when you decided to not acknowledge that relapse could happen to you. 

So when people ask us how he is doing, we will always answer with "great!". Because he is. But sometimes we also add, out loud or under our breath, "for now". This is us protecting ourselves. If we worry about relapse, if we acknowledge it could happen, maybe it won't. It is us being honest. People ask us so they can hear really good, positive things. So they don't have any little problematic worries fluttering in the back of their heads. This is us saying that Daniel is doing well, but he is also still fighting. It is us asking our friends to remember his happy ending isn't complete. It won't be for years. Every day he doesn't relapse it gets happier and more permanent, but our heads are still full of worry for him.

Yes, I know the knee jerk response to this bit of honesty is usually something like, "just trust. Negativity and worry accomplishes nothing. Don't cross bridges you haven't come to". This is sound advice, and something we tell ourselves often. But it comes out of nowhere- the further the emotional pendulum swings into the light, the further it also swings into the dark. These are places we didn't let ourselves visit in the thick of it, but we are finally starting to explore them, because they are there and in knowing them, we come to know ourselves.

When I started this blog, I called it "Little Daniel's Big Adventure" for a reason. I did not want to call it something that would, in any way, indicate that he was sick. I named it for his future adventures, all the things we would get to do with him that I would write about for him to relive, albeit through my eyes, as a teenager or adult. I wanted this experience with cancer to be the first of his many adventures recorded here. It was me kicking back against the darkness and dread, refusing to give it a toehold. Sometimes during the last year I have forgotten this, have gotten mired down in the process, have wondered if I was being too flippant about the very real fight he was in. I thought maybe I should have used a less cavalier word than "adventure". But honestly, to him, it has been one. He has no idea how unusual his experience has been, or how hard, or how painful. He doesn't know that queasy and tired isn't everyone's normal. He has been surrounded by people who laugh so he won't see them cry. His doctors, nurses, friends at the hospital, and family all share this vision for him- that he has no idea how upsetting or dangerous his "adventure" is. 

Now that the intensity is over and life is getting to be more normal, I am glad I fought so early and so hard to fool him into thinking all was normal. Nothing gives me more joy than seeing life roll off him like water from a duck's back. He's too young to know how to lie about being happy or to wear false bravado. His joy is real. His bravery is an effect of being genuinely unbothered by his countless blood draws, port accesses, drugs, spinal taps. It wasn't always that way, but by now he has forgotten the time in his life before it all became normal. Sometimes I worry this is setting him up for a lifetime of accepting unacceptable things, not recognizing abuse for what it is, but I also plan to have time after his treatment ends when he is five years old to help him relearn things like body autonomy and consent. (And then sometimes I worry that I worry too much.)

(A week later- I didn't get this posted, so may as well add to it.) 

It has been a crazy, crazy several weeks. It honestly feels like every time we take a step forward, we slide a few steps back. To review and add a few details I may or may not have mentioned earlier: the first of the month, B left to go paint the house his cousin is building, not really a step in the right direction as far as finding local work, but the pay is the same, and it was immediate. I stayed home until Daniel's chemo appointment on the 11th, then loaded two carseats, one 90 lb Golden Retriever, an ice chest, a strider bike, a box of toys, several suitcases and a collection of blankets and pillows into our little gas-sipping hatchback Ford Focus, and drove to Kansas. We spent several days at Grandpa Kevin and Grandma Sandi's house. They entertained babies, which gave me the opportunity to start a big deep cleaning project. In the process, my mom and I got to scheming about her furniture situation, got to dreaming and drawing, and decided we should build some couches. Yep. So we drew up some plans, at which point my dad took over the building of said couches. They are actually deep benches/storage boxes lining one wall of her living room, with a lounge end on one end. Before long, we had lost control of that project and my dad had hired some willing laborers to do it instead. Nobody complained about that. I moved onto the next project, painting trees on her walls, another project she has been waiting for me to come out here and do. Every ounce of artistic ability I possess comes from her, but for some reason she doubts her abilities, not to mention she has a full time, extremely high stress job. My goal this trip was to help her create a sanctuary to come home to in her tiny cottage of a house, constantly filled as it is with chaos and projects, and a way to easily and sustainably keep the chaos and projects out of sight. It is slowly coming together. 

While I was doing that, Bobby texted me a picture of his truck, being pulled out of a stand of trees on an extremely steep embankment on the side of Grand Mesa. When I finally got ahold of him on the phone, he told me he story. Early that morning, he had hit the road from Cedaredge, planning to drive up and over the Mesa to go home to Loveland, where he would pick up the trailer we borrowed from the farm when we moved, and drive to Kansas to return it, spending the rest of the week here with us doing long-procrastinated projects. As he rounded a curve, the morning sun in his eyes, he noticed a sheen on the road ahead, so he let off the gas and slowed a bit. But when he hit it, it was immediately obvious it was an extremely slick patch of black ice. The curve itself slants to the outside a bit, and faster than he could react, his back end slid out from behind him and dropped off the shoulder of the road, pulling him around until he left the road completely and slid backward down the side of the mesa. He thinks he did everything right, streering into the skid, not mashing on the brakes (until he was rocketing backward down the steep drop), having driven on ice and snow most of his adult life and never having had an accident before, but it all happened pretty fast. Thankfully, there was a thicket of trees about fifty feet below the road, which stopped him before the truck went sideways and rolled or otherwise continued to the bottom, another several hundred feet below him.

Apparently this curve is fairly well known locally. Not only does it slant the wrong way, it curves more tightly than it seems to, causing people to misjudge it. Last year a motorcyclist shot off it, tumbling into the trees, breaking some bones. When he had crawled back up to the road and called for help, and help had arrived, he told them he had also located another missing motorcyclist down there, unfortunately not so lucky as to have survived the crash. B was very fortunate that the only effects of his little incident was an adrenaline hangover and damage to every panel on the side of his truck- mirrors and door handles torn off and scrapes and gouges from the trees that stopped his descent. But the cost of the damage and ticket (because leaving the roadway necessitates a reckless driving ticket, regardless of fault) did negate most of his week's hard work. 

He arrived out here in Kansas and set to work painting my mom's house and completing a checklist of improvement projects at the farm. All week, it has almost become ridiculous enough to be funny, the way things have fought us. I left the lid perched on top of a can of paint, Bobby came along a few minutes later and grabbed it, flipping it over and splashing paint all over my mom's new flooring. He tried to fix a leaking faucet on his sister's bathtub, only to break the shut-off valve on her water heater. I ran over something on these dirt roads and put a big hole in a tire. Daniel removed the cover from a drain in the basement floor and discovered the pipe beneath was the perfect size to drop golf balls into. Alex discovered that throwing grandma's dishes on the floor made delightful noises as they shattered. He also discovered the joys of wet paint on several different occasions. He also discovered he can climb ladders. I feel like we have done approximately four days worth of real, actual work in the two weeks we have been here. At least that's what it would have taken us without all the "help" we received from two enthusiastic little boys.

Life. It's wonderful and hectic and contrary. That's how we know we're really living. 

Just living

Hello from the home of a no-drama mama. It feels too quiet. It's a good thing the littlest child has taken to screaming blood curdling screams over things like running low on food in his high chair tray and the fact that sometimes he has to be placed on the floor and not held. Without such constant, nerve shattering, ear splitting shrieking, our lives might be completely calm and under control. The horror. 

It feels weird, the lack of appointments and drama. The oral chemo thing is slowly becoming routine. I wait until Daniel has nursed just enough to get drowsy, leave him to practice going to sleep by himself with the promise that I will return to check on him, then set my alarm for two hours. Sometimes I go downstairs, clean the kitchen or fold laundry, sometimes I lie next to him and doze off, my alarm jerking me awake two hours later. I lift his limp, sleeping body onto my lap and coax him awake, asking him with kisses and whispers to please open his mouth and take his medicine, which he generally does without too much fuss, then I tuck him back in, cover his forehead with kisses and tell him how loved he is, to which he agrees with a sleepy "mmmhmmm", and he usually goes back to sleep without too much fuss. If I have managed to get a high protein meal in his tummy just before bed he will sleep most of the night, although if he doesn't, we do still have a meltdown when I tell him the boobs are sleeping and he can have them again when it is day. And thus I have begun to wean him. It sucks as much as I thought. No more rolling over semi-asleep and nursing him back to sleep when he wakes from a bad dream. Now I have to wake up enough to comfort him from both the effects of the dream and the betrayal of refusing to nurse him.

He has had a few episodes of midnight mystery pain, but considering how hard he has been playing some of these days, there probably is no mystery. 

His hair legitimately covers his head. 

When I look at him, I don't see cancer anymore. I just see a little boy. A solemn, thoughtful one who has no idea how loved he is. 

Today, while going through photos, I found this one. Almost everything about it seems symbolic. I probably would not have seen the symbolism in it a few months ago when it was taken. Maybe it is just because it illustrates how I felt so much of the last year. Small, impotent, so close to the sunshine but not in it, my forehead pressed against Happy, willing it to absorb. 

I thought I would be more nostalgic about Daniel's toddlerhood ending and his little-boy-hood beginning, but the truth is, I am absolutely loving it. Every new day sees him emerging more from under the fog of pain and nausea that was the last one-third of his life, and blooming into a real person. He is now stringing together two-word sentences (they should be complete sentences by now if he were up with the "normal" kids his age, but hey. You won't hear me complain. He is taking life at his own pace, and I'm cool with that.) He doesn't miss a lick. He can count to ten, minus seven and eight, and his days are spent classifying, naming, and counting things in his surroundings. He is an absolute sponge for concepts. I don't know how he knows some of the things he knows. He surprises me in a hundred ways a day, from recognizing favorite classical musical scores to knowing the name of every steam engine in Sodor (if this makes no sense to you, you are missing out on the somewhat condescending moral lessons and adventures of Thomas and his Friends, and clearly do not read multiple books about them aloud on a daily basis while holding a little boy who is holding small wooden replicas of them in each hand, because if a book about the unimportant troubles of Very Useful Engines is not read directly to those same engines, did the reading of it ever really happen?)

We have been just...living. I've decided to bring more order into our lives, so now I make the pushed-together beds we all sleep in every morning and keep the house a more manageable level of clean, and am on top of things much more in the homemaking department. All things one can do when one is no longer spending all of one's time putting out fires and driving to Denver.

 I finally decided enough was enough with the not being able to see out of my eyeballs situation (my eyesight changed drastically while pregnant and hasn't gone back yet, making driving problematic), so I used some of the cash given to my parents by some of their village to help us out with whatever needs might arise, and I got myself bespectacled. To my surprise, driving isn't nearly as scary as it was. When you can decipher at a glance what you are looking at in terms of oncoming traffic and traffic signs instead of having to squint at it for several seconds, this leaves time to notice, and therefore not crash into the things you did not have time to notice before. Not running over pedestrians or bicyclists is exactly what our current laid back lifestyle needs, so I am wearing glasses in public for the first time since seventh grade. I'm not hating the fashion statement, either. They hide my emerging crows feet. I feel like my face is starting to embrace honesty as much as my brain is these days. As in, no lying about the fact that I am fast approaching my mid thirties. Stress, dry Colorado air, and lots of mountain bike sunburns, squinting in the wind and harsh rays in simpler times has me feeling like I'm turning leathery. None of that rangy Colorado sinew, though. My skin is starting to suggest I've turned native over the course of the last ten years. But almost eleven months after having hauled an extra fifty pounds into the hospital to give birth to eight and a half pounds of it, my body still shouts "breeder!" Hips don't lie. And apparently neither do they shrink back to prebirth size as quickly after the second kid. Or maybe it's all the stress eating I've done in the last year. 'S'alright, though. I'm okay with getting older, and even with showing it. The more of my homies that don't make it to middle age, the more okay with it I become.

Bobby has finished one small painting project and starts soon on another. Unfortunately, the next one is on the other side of the Rocky Mountains, the spec home his cousin Wendell is building in Cedaredge, Colorado. If we still had our camper, we could probably accompany him, although it is still a little cold for that. But we don't, so we may take this daddyless time as an opportunity to take the babies to Kansas to see their grandparents, maybe leave them with grandpa and grandma after they come home from work in the evenings while I go out to the farm and begin the tedious task of separating our belongings from everyone else's belongings out there. The fact that we have lived without said belongings for a year and five months indicates that we probably don't need any of it, but we still have to find a way to get rid of it all. 

We are still working on which direction our next career steps should be. A painting business is daunting in an area so overrun with painters. The local consensus seems to be that painting can be done if one is willing to travel to do it. I would actually be fine with this if we could replace the above-mentioned camper we sold last year to finance medical bills and a down payment on a mortgage, because then we could travel together and not have to spent more time apart, since the whole idea of non-transit-related employment was that B could be home every night. Not to mention, the best times in our recent memories were of the summer before last, rambling about in the camper, waking up to new scenery every couple of days, making do with minimal stuff.

Since we are basically starting over from scratch, with none of our old, comfortable streams of income an option anymore, we are putting a lot of thought into intentionally building the life we want instead of just rolling where the wind blows us to, as we've always done in the past. We've always been too preoccupied keeping the wolf away from our door to really put a lot of planning into long term security, doing something we will still be happy doing five or ten years from now. We have talked, hypothesized, pontificated, and bounced a hundred ideas off each other in the last week, since B had to officially quit his trucking job. So far, we've only agreed that we are pretty much forced into self employment by the insurance situation. Everything else is up for debate. 

Two heads are better than one, and I know we will arrive at a solution that meets our requirements. Or we will shift our requirements. At any rate, we will get it figured out. I married someone with very little ego, who does not think any job is too menial for him if it provides for those he loves. I have watched him get eaten alive, give all the best parts of himself to a job he hates, but we have never once not been able to pay a bill on time. The ability to do so has been carved directly out of his soul at times, but he has always, somehow, managed to provide it when we needed it. Sometimes we have robbed Peter to pay Paul, but when it comes down to it, he would sell a kidney on the black market to keep his family afloat. I keep casting about for ways I can help, but it is difficult to come up with something that would work with my current life, Velcrobaby on my back and Big Brother tugging me around everywhere he goes, because there are so many wonderful things he needs to show me. Instead, we tell ourselves that right now it is time for Daddy to make an income to support four people while I make sure other sorts of bank accounts get filled- those of our children's emotional well being, physical touch, presence in our kids' lives. We can make bank later. We hope. 

In the meantime, we're taking the sixtieth look at our budget, trying to find more fat to trim. I've started inventorying our house, looking for anything we can sell. We don't need to store things we can do without. Last summer in the camper taught us minimalism is freeing. Neither of us wants a lot of belongings. We want experiences, feelings, and memories. In the past, I have struggled with missing a solid sense of belonging in a place with all of our bouncing around, but now I am beginning to think I misidentified the object of my desire. I now suspect place is just a hook to hang my hat between gathering the real things I desire- awe, beauty, wonder, love, joy, excitement, purpose. And no physical place, no longitude and latitude, regardless of the possessions I have stored there, can give me those things. Only friendships, relationships, the skies we wander beneath can pour such things into a heart, and only if it is open to receive them. 

And with those sage bits of what might be utter nonsense... Moving on.

It's warm and sunny today, curing all that ails. Hopefully. Little Brother woke up last night with no preamble at 2 am with alarmingly loud stridor, freaking out, wheezing and barking, croupy and gasping for breath. But an hour and a half of me holding him wrapped a blanket, sitting in an Adirondack chair on the back patio in the crisp night air had his airways soothed enough to breathe mostly quietly again, and spending the rest of the night under a heavy vapor from the cool mist humidifier fixed him right up. He woke this morning breathing with no effort. I wonder what that was about. I was sure he was coming down with another virus, but today he seems perfectly fine. 

Poor kid, I fear he has inherited his easily constricted airways from me. I spent an insane amount of my childhood in a foggy makeshift croup tent, lathered up with Vicks VapoRub, on a steady diet of sudafedrine and guaifenecin, which my parents swore by to keep the mucus out of my throat and chest and my airways open. I remember giving them a few nights just like Alex gave me- the loud barking of my own inhales and exhales waking me up, the panic as I ran down the hallway to announce to them, in honking gasps, that I couldn't breathe again. The bustle of activity in the middle of the night as they got up and tried to make me comfortable, soothe my bronchial tubes, reduce the inflammation so I could breathe. The difference was, they lived twenty nine miles from the nearest emergency room and as far as I know, never took me in, and we live about three miles from help if Little should start to turn blue. 

Now that I have my own kids, I think a lot about how they raised me. They let me wander out of their sight in my bare feet in rattlesnake infested grassland, in spite of the fact that I was their only kid and, because I apparently had a scorched earth policy regarding my mom's uterus, they could never have another one. 

This also blows my mind, now that I am a parent. I can't imagine going through what my mom went through. At twenty one years old, with plans of having a whole gaggle of kids, she went into labor with me, her first. She says it was basically painless. Upon being moved from the delivery room to her room (since this was 1983 and having babies happened in delivery rooms, not lovely private birthing suites), she began to feel a little dizzy, wondered if this was normal, asked the nurse who happened to be in her room at the moment for her opinion, and then tried to die. A lot of pitocin and twelve units of blood did nothing to help her hemorrhaging. In the ensuing chaos, she was asked to sign a consent for an operation, and upon trying, realized her fingers would not grip a pen, and that bleeding to death was not such a bad way to go. Then they cut her open and removed her uterus to stop the bleeding. She spent the next two weeks in the ICU, unable to see or hold her newborn. She says this was a minor detail to her at the time, considering that she was alive and I was apparently a magnificent marvel of cherubic perfection. I was bottle fed pumped breastmilk by other family members until she was discharged, and when she finally held me again, I took to breastfeeding as if we had been doing it all along. She escaped what could have been a whole other tragedy with the blood of twelve strangers pumping through her at the height of the 80's AIDS panic. At some point in the following years, she had to process the fact that her dreams of a big family were gone, her body was scarred, that childbirth had very nearly killed her. 

And yet, after all that, they let me be a free range kid. They let me fall off horses, slide down barn roofs, pull rusty nails out of my feet and then, still refusing to wear shoes, run through mucky feedlot pens hand-feeding the cattle, ride motorcycles. They stuck me in a croup tent to wheeze my way through childhood without rushing me to the emergency every time I had an episode. Now that I am faced with the same decisions, now that my own tiny miracle is reaching an age that demands budding independence, asking to play with his peers without my hovering while disconcertingly oblivious to his own mortality, I now realize how hard that must have been for her. I now realize how vulnerable her heart was, wrapped around me and all out in the open, and how every dangerous thing she let me do must have ripped it out a little further. I feel a little weak thinking about it. I have to outlive them, because if something happens to me, they lose all of their children in one fell swoop. It's one of those burdens an only kid carries alone. It isn't that a parent of multiple kids care about an individual child less, but an only child carries not some, but all of their parent's hopes, dreams, and future. It's no wonder we onlies are a little socially awkward. As much as the adults in our lives tried to give us childhoods, we have been on center stage our whole lives. Sure, this meant not having to share the doting or the Christmas presents, but this also meant that we have never truly been able to just be kids, always filling a role that is held solely by us. 

But if anyone wonders where her grandson gets his fighting spirit, they need only to look as far as his grandma. She is still kicking, but has already been preceded in death by her appendix, her uterus, and both breasts. She lost a brother in a car accident and was the one to find both of her parents dead as they passed away five weeks apart twelve years ago. She has had to turn loose of more dreams than most of us have even entertained. 

And with that, over and out. Perhaps it's time to go attempt to be a good mom myself. 

Speaking of mom things, this hangs on a bulletin board in the oncology clinic. I gave it to the creative art therapist there, not sure if she would have a use for it or not, but it was too big to display in my own house. I thought maybe some kid needing some artistic inspiration might find it in a drawing of a giggling kid and his Chemoduck. Wasn't really looking for notoriety, but the whole place now recognizes Daniel as that kid on the wall in the waiting room.