Chasing the Garden Eel Life

As long as I access this site from my PC, I can still copy and paste the body of my blog post here, in addition to the new hosting platform:  https://steemit.com/adventure/@winterwitch/chasing-the-garden-eel-life

 Can I have sleepy medicine today? Is my port a part of my skeleton? When did you get your port out, mommy? Can I watch a video of someone getting their port out?
D asked me these questions on the drive to Denver the other day, as he sat in the backseat, freshly washed hair perfectly combed back “like superman”. They all said something about his experience. He loves certain parts of treatment, like his propofol naps, which doesn’t give me the same warm fuzzies that it clearly gives him. He doesn’t remember life before treatment. He doesn’t realize his experience is unique. He has a steel stomach and prefers truth over comfortable oblivion.
When we first saw him post-op, the hard knob under the skin on his chest for the last three and a half years replaced by a sutured incision and steri-strips, sitting up in bed woozy but awake, I thought I would take a moment to feel relieved and jubilant, but we were stressed out and in a hurry because we had booked another appointment across town the same afternoon. I had my wisdom teeth removed (I just cant even with having another mouthful of stitches down my gums and up my cheeks, but it’s done now...except for the bruising and the leaking and the perforated sinus and the nasal mists and the gastric side effects of the antibiotics and soft foods), then spent the night sitting awake on the couch because I had taken the first day’s worth of a steroid taper all at the same time and was buzzing, and everything hurt and was bleeding, and I was a bit woozy myself, so I didn’t truly “see” him until the next day. It was then I sat and watched him watching a movie beside me on the couch, watched his expressions and emotions change with input, saw comprehension in his delight over funny scenes, fear over stressful ones, the corners of his mouth quiver over the sad ones.
And then I finally started to feel things. The fear I thought I would feel over relapse once chemo ended isn’t there, possibly because I have already cycled through so many end-of-treatment freakouts I actually managed to cross that bridge before I got to it, or at least haven’t worked myself back around to it yet. I guess what I feel is just...white hot heartbreak over how absolutely beautiful it all is. How innocent he still is. How unwritten his future is. All of our futures are. How smooth his forehead is, how trusting his eyes. How childish he still is and how much he is still mine.
My heart had been jumping in my chest lately. No, like literally. The stress and medication and steroids and diet after having five teeth extracted have kicked off the arrhythmia I usually manage to keep controlled by a careful diet and stress management. It makes me feel fragile. Mortal. Even though it isn’t a dangerous one, it carries just enough of a hint of threat that it makes me stop and acknowledge my own heartbeat, instead of having it quietly just pumping away in the background. It reminds me we are all only a missed beat away from devastating loss. It makes me realize that for today, and today only, everything is completely perfect. Tomorrow, it may not be, but instead of fear, or rather because of fear, I realize none of us has the luxury of living in tomorrow’s crisis when we have such an immediate demand to soak up today’s perfection.
Cancer was an ugly messenger that brought us the priceless gift of realizing just how much we could lose tomorrow. How much we will lose tomorrow. Tomorrow, little boys will be bigger. We’ll all be a day closer to when this all ends.
We recently returned the floor futons we had borrowed, when optimistically thinking our little boys might wish to sleep in their own beds. They aren’t in the slightest bit interested, and to be honest, neither are we. Their absence feels like lost time. We remain a family of four that only needs one bed. There is time, when they are ready. They leave our sides so willingly during the day, so eager to explore and wander and learn about the world, that at night, when eons of nighttime predators outside ancient circles of firelight whisper to our collective instincts, we gather them close, whisper in their sleeping ears how loved they are, promise to do our best to protect them as long as they need us to, tell them how our life is better with them in it. Sometimes they are not quite asleep, so they murmur sleepy acknowledgement, place soft palms on our faces, and sigh as they slip into dreams. It’s just all so unbelievably precious. So heart-shatteringly beautiful.
And then, as the night quiets, the guilt sets in as I silently count kids, like beads on a rosary. The kids we’ve met who fought harder, and had so much determination, and hope, whose parents are just trying to find their way through life without them. I owe it to them to remember that D is alive, that his mere presence is everything, that every ambivalent moment or minute annoyance is simply affirmation of the beauty of life. The fact that so many died for the data and protocol that saved his life just crushes me under the sheer weight of all the tears shed for them. I feel so selfish wrapping my arms around D’s warm, sleeping body, pulling him against me, curling around him, burying my face in his tangled curls. I feel like I am somehow throwing those other parents under the bus, the ones out in the cold, the ones lying curled each night around only the gaping holes in their chests, to lie there myself and be so whole and happy. I hear their faltering words as they try to explain things that don’t have language, things that were never meant to be voiced, and try to keep moving, having lost parts of themselves that will never be replaced. I feel my suddenly tenuous grasp on joy start to weaken, the horrible, icy fingers of fear start to wrap around my heart, nighttime dreads seizing their opportunity, convincing me that literally tomorrow, it will end. Feelings of impending doom, in clinical speak, shot through with sad tenderness. Classic sign of anxiety and depression, I know. I’m not in denial. I tell my healthcare providers about these midnight dreads, but also tell them that when the sun rises, they dissipate. In spite of me being convinced in the middle of the night I will have to cancel all my plans for the next day, never drive anywhere ever again, never let my kids out of my house, and just generally call off life, with the sun comes joy and just enough of the illusion of invincibility to catapult me though the day while the nocturnal dreads sleep.
I don’t know that there is much of a takeaway there. Odds are better than maybe that I’m a complete mess, but joy right now is flaming as hot as the dreads are icy, and maybe what is normal isn’t as important as what is bearable. At least for now. Everyone to whom the I tell these things seems concerned, but also reminds me of the current facts of my life the last few years- job changes and financial insecurity and three different houses. Kid with cancer. Nearly life-changing injury in the past year. Three weeks away from yet another complete life change. Pressure to be ready to leave this house, which is safe and homey and filled with things that define my life, inanimate objects that were with me through everything, that I am touching for the last time, then giving away. Someone who has lived 35 years safely in the middle of several thousand miles of solid land, three weeks away from leaving the mainland with her family and their four suitcases to go live on an island surrounded by thousands of miles of water. All things I honestly don’t feel that traumatized by or particularly worried over when I dwell on them one by one, but the aggregate does sort of paint an unstable picture, I suppose.
I know my things are just things. The dress I wore at my best friend’s funeral. The lamp that shed a soft glow over my babies as I sat nursing them. The furniture we inherited from condo remodels over the years, and the furniture we splurged on buying for ourselves. The snow clothes that were the barrier between us and sub-zero high altitude winter days. The “Love Your Melon” hats from the childhood cancer charity of the same name, that I won’t have occasion to feel cute in, living in year-round summer. The expensive winter boots I finally allowed myself to spend real money on, and then wondered how I’d lived my life without them. It is a bit surreal, in the sense that it is usually someone else that goes through a loved ones life, disperses their stuff, smells their clothes, gives away their shoes and casserole pans and throws away their old, shapeless bras. But I’m doing this while I still have a lot of life left to live, and it’s weird. It’s making me look at my life through a lens of objectivity, and it’s nostalgic and uncomfortable and feels a little shameful, realizing how much stuff I’ve accumulated, all my justifications for each item, and how they smack of first world privilege. I have helped do this for others, after they weren’t here to have an opinion on what happens to their stuff. I feel a little funerary doing it for myself, as well. It is a burial ritual for all the ways I have presented myself to the world, even as it makes room to become more. Each item that goes into the “keep” pile is there for a very specific reason. If not practical, it holds emotional ties I simply can’t yet bring myself to sever. I have placed the hospital wristbands our family wore on D’s port-removal day in a ziplock bag with the card I kept in my purse for three and a half years with instructions for local emergency room visits- instructions for providers on how to access his port, what size of needle to use, how to draw cultures and screen for sepsis. I can throw away old ink pens, stray bobby pins, picture hanger hooks and holey wool socks lacking their mates, but not a torn-up hospital wristband. There are items I am surprised I still have, that have survived more moves than is justified considering how little emotion they provoke for me now, when once they defined me. I suppose the items I keep speak to my current chosen identity, which also feels like an uncomfortable mirror to look in, considering what they are- things that hint of me and mine as victim as well as victor. I don’t know how to be normal anymore, how to live a mundane life without crisis or fear. I don’t know how to identify if not as a warrior mom. New identities will sneak up on me, I am sure, and slowly take the place of my current one, and before I know it, I will wonder why I kept chemo calendars and wristbands, but right now, I want to move away from fear and stress and just take a few things for granted once in a while, but I don’t quite know how to.
Deconstructing the sum of my existence has me feeling exactly as fleeting, as transient, as easily blown away on the wind as we all truly are, but never let ourselves feel. I grew up so rooted, I thought roots were essential to happiness. Maybe they are. I know there are always those weeks after a move to a new place where everything feels wrong and backwards and upside down, and I am weepy because nothing is familiar and I really just need my mom. And then I make my first friend, and start to find my people, cook good food, find my ugly pants in a box marked “misc”, sit on new hills under the same sunsets, stick my toes into new water, and slowly, things turn aright again.
In a sense, I am somewhat fortunate to have very few family connections to have to strain by a move farther away from them. The ones I have are priceless to me, and even those, I struggle with feeling as though I am throwing onto a “store indefinitely” pile, along with the select items that would be a bigger pain to replace if/when we return than it is to commandeer a corner of my parent’s attic. A stand mixer, a box of snow clothes, a pile of skis, and my own mother’s heart in a rubbermaid tote. Just kidding. But I’m not kidding when I say that the circumstances of my life have left me with a deep, annoying conviction that I am responsible for the happiness of others, and distance does not lend itself to micromanaging relationships. It’s nobody’s fault, at least not any fault that anyone could have foreseen and avoided as those priorities were being rooted in my subconscious, it’s just that lovely baggage we all carry with us and isn’t quite as easy to decide what to do with as a lead crystal serving bowl you got for your wedding and are sitting on the floor holding, trying to decide if it is worth keeping against the day you move back and suddenly become a hostess type. I keep telling myself that this is my life, that I have exactly one of them, and that I am capable of having it all...that nothing besides me, not distance or five hours difference in time zones or my own busyness gets to decide the quality of my friendship and relationship offerings, and I have enough love, and am resourceful enough, I can make sure I am able to be just as unhealthily codependent from a distance as I am in person.
We have three weeks here yet. It feels like it’s already over for us in Colorado, because B is working extremely long hours, trying to get entirely too many remodel contracts fulfilled in the time between the day after Labor Dday, when the busy summer rental season flatlined and the condos became available for repairs, and November 1, which is our self-imposed deadline. We move out of this house September 28, give the keys to the new owners, take our “keep” pile to Kansas, then drive back to Denver to fly out October 1 on Daniel’s Make-a-Wish adventure. We return October 8, at which point the boys and I will drive to Kansas to stay with my parents for the next three weeks while B finds a bed in Summit County and finishes his work here, then hit the road for Los Angeles, where we will put our vehicle on a boat, get on a plane, and most likely suddenly realize, once the mainland disappears from under us and we see for ourselves how much water there is between our family and our new life, that we are making a huge mistake.
The Make-a-Wish is Disney. I honestly thought that if we ever had a kid who got to do a Make-a-Wish, that it would be unique. It would truly be an adventure. That we were not so mundane as to have a kid who would choose Orlando resort hell as his one big goal in life. I tried to suggest other things, although deep down, I knew they were sort of my own wishes...but still wanted to verify that they were not more attractive to him than some germ-infested rides in a theme park, jostling for places in long lines with other sweaty humans and overstimulated kids. We talked about an Amtrak pass, the ability to ride a train as far as we wanted and see as many places as it took us, or a flight to somewhere he could “study” marine life. His exact wish was, “I want to travel all over the world and have adventures and do experiments”, which was immediately translated by Make-a-Wish into Epcot, and it took about thirty seconds into the Make-a-Wish interview for me to realize something. Non-Disney wishes are a pain, especially with the child being only five years old. Make-a-Wish simply does not have to pay a lot of money to send a family to Disney for a week, allowing them to save the big bucks for the older kids, the sicker kids, the more imaginative kids. And the more I thought about it, the more I realized that my kid doesn’t have to be unique unless he wants to be. He just needs to be a kid. If they can send us to Orlando, they can use donated air miles to get us there. They can reserve a villa for us at Give Kids the World, a non-profit, donation-supported resort where nobody pays to stay, but is only available to kids with life-threatening conditions. The parks donate passes. I don’t know if rental cars are donated, but it’s likely they aren’t full-price. There is already a well-oiled machine that exists for the sole purpose of sending warrior kids to Disney, and to choose something “unique”, just because I think we are better than to spend a once-in-a-lifetime wish on plastic castles and cartoon characters, is some pretty self-absorbed insanity. Although my kid has no frame of reference for theme parks or Disney World, he will definitely not think he is better than plastic consumerism and overstimulating rides with sticky handles, and this is about him. I have scoped out planetariums while there, and have a big goal of showing him the rings on Saturn and distant nebulas through a real telescope, to blow his mind. The resort itself is like a mini theme park, it seems, with the goal being that for one week, the little warriors who stay there, who have heard so much “no”, only hear “yes”. It will be an amazing, special time, and he asked me the other day when were are “moving to Disneyworld.”
If I seem a bit snooty, keep in mind I grew up without TV. Disney was an abstract concept to me. My formative years were not filled with Disney’s influence. While my peers were watching and pretending to be Ariel or Aurora, I was learning to read and devouring the Little House books, and pretending to be a pioneer on a couple thousand acres of grassland. My heroes and alter-egos in hours of pretend play were Laura Ingalls and Amelia Earhart and Jo March and a brief, intense fling as Joan of Arc, after Mark Twain introduced her to me, and a confusing lineup of dramatic Victorian heroines I found in a stash of books in the basement left there by previous inhabitants. So I don’t get the Disney obsession. I just don’t. I’m not saying I am a better person for having spent my childhood obsessed with literary heroines instead of cartoon ones, and I love that cartoon heroines inspire my sons, because gender was a huge factor in who inspired me as a kid and so far, my sons seem to be just as enamored with girl heroes as boy ones. But I just don’t get it.
Bobby gets it. I am obsessed and completely delighted by garden eels, and drag my boys to the Tropical Discovery building every time we use our zoo pass in Denver, because they must learn to love the garden eels as I do, and be as delighted by them popping up out of the sand of their aquarium to sway in the current like fat, contented blades of grass. They are everything I’m not, everything I’ve always wondered what it would be to live like, perfectly happy, just popping up to watch the ocean colors swirl around, sway, and enjoy life. They might be my spirit animal. But apparently The Little Mermaid gave tiny Bobby nightmares, or specifically the garden eels did, and now they give him the creeps. I have yet to watch The Little Mermaid. Maybe his hangup over garden eels will make more sense to someone who has. But it does make me think about how early phobias and influences stay with us. And it makes me wonder what will be my boys’ “stuff” when they’re grown- what thing we are innocently doing now, allowing them to witness, that will create freakout echos as adults when they are reminded of them. Garden eels. C’mon. I love my boys’ dad, but he can’t take this from us. Garden eels for lyfe.

Cancer Pass

Since the Blogger app tends to crash often on my phone, I'm cheating on it with a shiny new platform, one that might even pay me if a post should happen to go viral. I'll still link new posts here, though. 

Enjoy.

https://steemit.com/health/@winterwitch/cancer-pass

Manic Happies

Hello, and welcome back to the crazy.

It is hard to describe, except to those who have lived in a mountain town, the manic, frantic insanity that is a mountain summer. Everything else gets dropped because everything that requires working outside has been back-burnered until those fleeting few months. Outdoor projects and home repairs take up a large portion of regular people’s summers, but when you are responsible for the repairs, repainting, deck repairs, etc on over thirty homes…it gets nutty. Not to mention all the recreation that is literally outside your door and reproaching you every day you don’t get out and enjoy it. Our summer was a haze of hard work, interrupted by paddleboarding and mountain biking and trail running and road biking and pulling the kids around in the bike trailer and swimming and so many things, interrupted by me tearing a quarter of my face off, which put an abrupt stop to all the recreation but provided us an opportunity to replace the flooring and do some home repairs of our own, since the sun and wind made being outside almost unbearable for me until the aspen leaves started to change color and my face started to heal enough to enjoy being outdoors again.

Actually, the mania only ended about a week ago, when winter’s first truly cold snap hit. As temps dropped into single digits, we finally remembered to do things like breathe and bathe. I stopped getting out of bed early every morning to trail run and started working on winter weight gain and muscle atrophy in earnest. Now that the ski season is hitting full swing, B is spending more hours at work appeasing our guests and less time at home doing computer work, limiting my opportunities to get out and exercise, so I may as well just commit to gaining a good ten pounds and losing significant leg strength between now and next spring.

Daniel had a rough two months this fall, a lot of fevers leading to two different hospital stays. One of the unforeseen consequences of living in a tourist destination (which wouldn’t have been unforeseen if we had given it more than an hour’s thought when deciding to move back up here) is the fact that every day, someone drags in a fancy new virus from wherever they flew in from. And since most of the local working class is in the hospitality and service industry, and send their kids to school sick so they don’t have to miss a day of work, we get exposed to such a toxic viral sludge every day we venture out our front door, it’s hard to stay healthy. And here is where I must thank the woman who holds the most influence over Daniel, aside from me: his preschool teacher. Being surrounded by tiny germbots every day has turned her into a master of handwashing policy, a disinfectant-weilding Joan of Arc wading into battle against daily armies of viruses and bacteria. And when she starts to lose the battle, she tells me. If she suspects kids who have been out sick are going to be sent back to school still contagious, she tells me. If the school has an outbreak that will inevitably break through her defensive disinfectant lines, if the janitorial staff has unfilled positions resulting in bathrooms not getting cleaned, she tells me, and we keep Daniel home until it is relatively safer to send him back. In the meantime, she packs a box of the week’s activities and crafts and books for him, so he can keep up with whatever his classmates are doing without him. On extended absences, she video calls us with her own phone for morning circle times, so Daniel can contribute to the songs and questions and activities at least for a few minutes. Our preschool experience in Loveland was alienating for me as a parent, teachers were distant and dismissive, and I had no line of communication with them. Our experience up here has been totally different. It was probably worth the move for the school, but now we might be stuck up here while our kids are in school, since we don’t know that we’ll find another school quite like this small, friendly one.

I haven’t been blogging lately because I have started another project, as insane as it is ambitious: I’m writing a book. I want to provide a resource to parents who have just had the rug jerked out from under them by their kid’s cancer diagnosis. But not just a practical resource. I want to write a book that can provide an irreverent, true look at the messed up world of childhood cancer, one that can help them laugh and cry about the craziness and feel a little less alone. If I make any profit, I want to be able to donate some of it to childhood cancer research. I want to be able to have it be a resource to parents who need comic relief and truth bombs and solidarity in the middle of their worst trauma, and to have it be low enough priced they can afford it while also having immense financial stress. So instead of blogging, I’ve been writing book chapters whenever I get a free moment. It started as a directionless commentary on life sort of book, but it kept straying toward being a niche sort of book aimed at cancer parents, so it has sort of officially been reclassified as such. I’ve also been trying to find a way to monetize this blog without being obnoxious, which might mean moving it to a new hosting site. I’ll let you know if that happens. I’ve located an upstart hosting platform that pays per view and per upvote (in its own cryptocurrency, which can be converted into USD) as it works to establish itself in the blogging and social media world, so it might not hurt to move it over there, but most of the content is less personal than what I share here, so I’m doing more research.  And I have been doing a ton of research into finding ways to work from home without doing multi-level marketing, because I refuse. Girlfriend has limits to how hard she can sell herself, and I have discovered the payoff is just not worth the effort. This has involved doing a ton of research into developing a private label product, which I think has potential, but oh my, the beaurocracy and safety testing and insuring and registering and applying that will be involved is daunting.

I am doing all this, aside from the book, because I am observing the effects of being involved with the lodging company again on poor B. Moving back up here was a good decision, I think, because of all the opportunities it affords us to get out and enjoy the outdoors, but the actual job is doing to him what it always did, even though we swore to ourselves this time would be different. We told ourselves it was going to be just a job, minus the stress of all the interpersonal stuff that drove him to quit after five years of management last time. This time he would simply receive work orders, perform repairs, and not have any management responsibilities, we thought. Except that, after we left, many owners became somewhat dissatisfied with the management, and now that B is back, albeit in a non-managerial position, he still holds their trust, so instead of following proper channels, they now bypass management and call him directly. The same drama that he fled five years ago now follows him again. He thought he would do the bigger repairs, complete them, and be able to come home in the evenings and leave work at work, but he often spends all day trying to get to the real repairs while making minor deliveries, changing lightbulbs, things that I did five years ago when I was able to work. His work orders go undone and pile up, and he gets so stressed out about not being able to get to his actual job that he refuses to take days off when he needs them, while undercharging to the point of making 2009-level wages. Because as much work as there is to do, if we lose our subsidized healthcare, there is no way we can make enough money to make up the difference, but hiring another person would be so expensive for this company he can’t conscientiously do it. In this county, with unsustainably high living expenses, the workforce is transient, long-time locals either have stable jobs or trust funds, and the vast majority only pretend to work enough to finance skiing, drinking, and weed. Finding an employee who consistently shows up for work, has the skills needed to do the repairs needed, is trustworthy enough to allow access to empty homes, and is not a heavy drinker or drug user is like finding a unicorn, and anyone not meeting those requirements would make even more work for B, not less. Not to mention such an employee would require full-time work, and we have enough work for about one and a half employees, not two, so instead of hiring another person, B is doing about fifty percent more work than he should be. Also, I am in favor of legalizing marijuana, but since it has been prohibited for so long, the pendulum has swung pretty severely here toward irresponsible use. Employees who realize it is socially unacceptable to show up drunk don’t realize it isn’t okay to show up high. Our long-time contractors, those we worked with ten years ago, just aren’t as useful as they used to be. Our red-eyed hot tub contractors can’t navigate icy steps anymore, or really any obstacles, so they demand we keep everything much more shoveled and de-iced than they ever cared about before. Our snowplow guy won’t get out of his truck for any reason. It all makes more work for us, as members of a seeming minority who aren’t required to pee in a cup to keep our jobs, but still could. It isn’t even that we have such a problem with an herbal escape now and then, but neither of us can afford to mentally check out, ever, at this point in our lives.

So I am trying to use this time in my life, unable to work except from home as I raise my little boys, to try to transition us toward other income streams that can be managed from wherever we bounce to in the future, or at least research them, so when treatment ends and we are able to make more money, we can do so. We are finally wrapping our minds around the fact that the American dream is dead to those diagnosed with life-threatening illnesses. When being broke is the only way to insure one will receive healthcare without going into debilitating debt, one no longer has the option to work hard and achieve financial success. Adulting becomes a tightrope of earning just enough to survive, but not so much to send one deeper into debt, as would happen if we were to lose D’s Medicaid coverage and our healthcare expenses would jump by $30,000/year, as our calculations show they would, should we become responsible for insurance premiums, copays, self-pays, deductibles, and subject to more restrictions on which medical facilities we could use. We cannot even find a plan that covers both our local Catholic healthcare, which holds a monopoly on our area, and the University of Colorado facilities we use in Denver.

The income levels our subsidies are based on do not go far at all in one of the most expensive areas of the U.S. But it has become a real point of pride with us, living well within our limited means and still enjoying many of the benefits those making six figures enjoy, like living three miles from a world class ski resort. We’ve done this by paring down our lifestyle and trimming away all the unnecessary extras to allow us to still do the things important to us, like keeping our vehicles updated and reliable, our home from falling apart, and keeping our priorities ordered to truly enjoy each moment. This means we traded a lovely tri-level home with a real backyard in a decently middle class neighborhood in Northern Colorado for a trailer house on a rented lot, we don’t eat fancy food or turn the heat up to comfortable levels in our house, and we hardly ever drive more than ten miles from home unless it is for work, but our boys have tiny, second-hand skis and ice skates, we know just when the resorts are giving out free cookies or ice cream or hosting dance parties or fireside coloring times, and we’re cute enough when these tiny skiers are out shredding the snow, ski patrol gives us coupons for free Starbucks hot chocolate on the regular. We’re trying to take the principles of minimalism and apply them to a family of four, and it has become a rewarding experience. I know there is value in sentimentality, but selling a decade of things I’ve kept because they have some connection to my past or I’m afraid I’ll miss them in the future has been freeing. The lack of home décor or fancy kitchen appliances and serving ware doesn’t affect our happiness. Our kids sleeping in our bed with us and leaving space in their would-be bedroom to create enormous, messy projects doesn’t make us less happy in the least. Our currency has become happiness, experiences, and memories, which is something that, as long as we have each other, we have unlimited earning potential for. Sometimes, on slow midweek evenings when all the tourists have gone, we sneak into the fancy condos that we manage (please don’t report us for doing this!!) and we go down to the pool, and sit in the hot tub under the lighted ski runs and stars, and pretend we are on vacation, and in that moment, our experience of life is no different than if we had a million dollars and a fancy ski condo. This is what Summit County does for us- it gives us the opportunity to live a lifestyle that others wait for retirement to have, as long as we are willing to sacrifice things like homeownership, fancy cars, eating out, careers. Which cancer has already sacrificed for us, so no great loss at the moment.

I can’t speak too smugly, however, about living low-income and well, because people keep doing things for us. My parents are worried about our boys’ growing brains, so they have gifted us with meat, bottles of healthy cooking oils, bags of avocadoes, bulk nuts that I add to everything they eat to increase calories and healthy fats, things that we do not buy for ourselves because they are too expensive. My boys have entirely too many toys, thanks to their grandparents and godparents and aunties. Daniel’s hands are warm because his grandma keeps him in gloves. Their godmother gives both boys several sets of new clothes each time they jump a size, while other friends keep them in hand-me-downs, and books are something they always have, but we never actually buy, because cultivating their love of reading is extremely important to their extended family. My bestie up here keeps finding ways to enable us to live on practically nothing, with cast-offs from her wealthy housekeeping clients who gift her with the rich-lady items they no longer use, giving me sportswear she claims will never fit her, even showing up early to a sample sale to grab all the good stuff and holding it until I could get there, scoring me hundreds of dollars of new ski outerwear and base layers for like $20 right when my six year old ski coat was falling apart and getting embarrassing. She randomly drops by with lunch, or pays me to groom her dogs or lay flooring in her house, and I sometimes agree to pretend these small things are legitimately worth what she pays, because she is a scary Lithuanian and yells at me when I try to argue with her. She offers to watch my little boys so I don’t have to drag them into the germy grocery store, and keeps offering to watch them while B and I go do something fun together. Friends in Kansas sometimes send things up here with my parents- freezer meals, bags of flour, oat flakes, cornmeal. My boys have a scary New Yorker for an honorary auntie who is also impatient with us arguing with her when she tries to give us stuff, so we say thank you and just hope we can find a way to be there for her when she needs it in the same way she’s been there for us. There is low-income, and then there is poor. Our income is actually much higher than it appears because of all the things we enjoy without needing to buy, because we are rich in all the right ways, because our family, both genetic and spiritual, is selfless and amazing. True poverty, I am convinced, is the lack of a supporting village. Thanks to those who love us, we enjoy a real wealth of happiness and joy and being able to live on very little, and still experience so many good things. My greatest dream is that someday, we will dig ourselves out and be able to show the selflessness we have been shown by our village to someone else in our position.

Daniel is currently home from school as we wait for a virus involving high fevers to work itself through the student population. The weather is warming up, creeping into the 30’s, so we should be able to get out of the house this next week. My face does not do well with very cold temps, due to its lack of circulation in the reattached parts; I worry about doing further damage to the tissue on my cheeks and lips, since I can’t really tell when they are starting to get frostbite. Only a few minutes outside in single digit temps blanches the patched-together pieces that are still working on reestablishing bloodflow and nerve endings. I still can’t freaking believe I did that much damage to myself. I knew better. But recently, I have started being able to close my lips to make P’s and B’s and kissy noises and motor noises, although I can no longer whistle for the dog when we’re out on the trails. The visible damage is only really noticeable when I am not smiling, since a smile pulls the damaged side of my top lip down to where it should be and the scars on my cheek mostly disappear into a laugh line. Sometimes I’ll see a candid photo of myself with no smile, or where I am concentrating and have pursed lips, and I recoil a bit at how disfigured I actually look, and how much the scarring has aged my face, but then I see one where I am smiling or laughing, and I realize that as long as I am happy and I show it, I am me. I’m good with that. Given how much more of me could have been left in that trail above Breckenridge, I could have a gargoyle smile, which would be worse than a mangled resting bitch face. The suggestion of needing some surgical revision in the future is still on the table, basically cutting out the existing scar tissue and putting it all back together more neatly and precisely, using all the new tissue I’ve grown in the meantime to stretch and fill all the spots that got weirdly pulled together when compensating for the missing tissue during the first surgery. Some of the scars that are already shockingly smooth, given the amount of damage, could become all but invisible with plastic surgery wizardry, but honestly, it’s functional. It’s becoming me, a part of my story, precious because it is life-affirming, reminding me how much joy life can offer and how easily I could deny myself future opportunities to experience that joy by mindlessly doing stupid, dangerous stuff. Besides, that would mean weeks of having a mouth full of stitches, more antibiotics, months of pain as all the rearranged parts had to adjust to being stretched in new ways, and I’m over it. Even minor pain is exhausting. My summer of face trauma, pinched nerves, sprained joints, and broken toe, which is finally able to bend a little after four months of ouch (I think the toe thing happened after my last post…I finished a bike race in almost last place, and was running barefoot to put my bike away before a rain shower about a month after the face thing, caught the piggy who had no roast beef in a clump of grass, came down with my full weight on it, and felt it snap) has me in real awe of people who stay functional through chronic pain cycles. Seriously. You rock.

Anyway. Sorry I went all incommunicado and left that gross picture up at the top of this blog for so long. I can’t promise I’ll do better after this, but I’ll try. I’ve tried to at least keep Facebook updated for my nearies and dearies, but I know not all of you check in there. Love you.

A week to forget

And then sometimes life just smashes your face and leaves you dizzy and bloody. 

Me before last weekend: overwhelmed, but still swimming. 

Me after last weekend: a whole lot more overwhelmed, but still swimming. I'd tell you if I weren't. Promise. 

I wrote that last post two days before the Breck Mountain Enduro, another race in the mountain bike series I signed up for so I couldn't back out of biking therapy. I believe I even said, and I quote, "I'll do it if it kills me." 

After I wrote it but before posting it, my friend and I went up and made a few more loops on the short stages so I could get a good feel for the trail, and on race day, I felt really, honestly confident. My downhill and technical skills generally somewhat compensate for my lack of leg strength, and an enduro format meant only the downhill portions were timed. So it was all good, right? 

It was so much fun. I asked Bobby if I could borrow his bike, heavier than mine with better geometry for stability on fast descents, with a longer wheel base and longer suspension, but he was reluctant to let me ride it simply because he didn't want to spend any money to replace anything on it if I broke it. (Remember this little tidbit for later.) So on the morning of the race, I woke up, spent a little time searching for the only pads I own (elbow, purchased after my last big crash that removed a large amount of forearm skin), couldn't find them, so I loaded up my bike and went to the race. 

About halfway through my second stage, I suddenly felt The Switch. The Switch is what I call that moment when something happens mentally that welds me to my bike and nothing else matters. Maybe endorphins and adrenaline kick in. Maybe I finally stop thinking about anything except riding. Maybe I've been on my bike long enough to feel like it is an extension of my body. Whatever it is, when The Switch kicks in, I suddenly look up, relax, let off my brakes, and just watch the trail come, lean into the corners, and feel as if the whole world is smiling. The Switch is the reason I bike. 

Which is how I felt as I started the last downhill portion. I rode around a few features that were too technical for me, took a wooden bridge drop with a fairly gentle dismount, came around the corner feeling strong and confident, and decided in a split second I would ride the last bridge drop, with a steep, short dismount. I had ridden it on preride laps and had frightened myself a little bit because in order to keep from going over the handlebars, I had to be behind my seat enough my butt had to be almost rubbing my back wheel. I had dropped my seat a few inches at the top (I haven't spent $300 on a fancy hydraulic seat post that allows adjustments on the fly like almost every other mountain biker). I rode up on the bridge, dropped my front wheel off the lip, may not have jerked it up enough, may not have thrown my weight far enough back to get it over my rear wheel, and the next thing I knew, I was sliding, face down in the dust and gravel. I slid to a stop, sat up, and felt an odd weight hanging off my face. Reaching up, my hand came away covered in blood and I felt something squishy hanging from my face. I stuck my tongue out and it encountered air, not lip as it was accustomed to. The sickening realization dawned on me that the gummy worm like thing hanging over my bottom lip was, in fact, part of my top lip. I actually looked down to see if the rest of it was lying on the ground, realized my bike was lying in the trail where the next rider would not see it if they came flying over the next feature, forced myself to my feet and drunkenly make my way to it, dragging it out of the trail, then sat down to wait for help from the next rider, feeling bad because they would almost certainly stop to help me and forfeit their race as well. I felt for my phone in my jersey pocket and realized it was gone. 

Sure enough, the next rider rounded the corner, not taking the bridge feature as I had, hit her brakes to ask if I was okay, then sped down to tell medical that I needed help. At the same time, a mystery person appeared. I thought it was the rider, having ditched her bike and walked back to me, but have since pieced together that they were two separate people. She asked if she could help me and I said, as clearly as I could without an upper lip, that I had lost my phone and needed her to call for help. She did, then stayed with me until the medics hiked up the hill to me. In the meantime, I asked if she could see my phone in the trail, she started looking around for it, and I got up and wobbled toward the landing zone as well. I eventually spotted two square dust-colored objects under the dust in the trail, my phone and mini tool kit, grabbed them, and weaved back to my spot under a tree, then wiped off my phone and turned on the camera. The poor mystery angel saw me doing it and gasped a bit. "No! Don't look at yourself!" I switched my camera to front facing because apparently I'm a rebel, gravel and blood falling out of my mouth, and told her, "It's alright. I know I tore my lip off. I already know I've got a lot of reconstructive surgery ahead of me." I looked, and realized the weight hanging off my face wasn't just my lip, but my cheek as well. My bottom lip and chin also hung lower than usual, torn from my gums and jaw. Mystery Angel nervously said something like, "They should be here soon." I stood up again, adrenaline still coursing through me, making sitting still impossible, and announced/mumbled, "Maybe I should start walking down to meet them." At this point, Mystery Angel suddenly grew some authority. "You need to SIT DOWN." Her sudden conviction cut through the other noise, so I obediently plopped back down to wait. 

Medics arrived and I stood up to meet them, grabbing my bike. Someone offered to walk it down for me, but I was reluctant to let go of it. I somehow felt like once I let go of it I would not be a mountain biker again for a really long time, so I said I needed it for stability. They took it anyway, telling me they could provide better stability. I answered all their questions, couldn't remember what day it was, then launched into a long explanation of how this is not unusual for me but it was definitely sometime after June 20. 

And then adrenaline started to ebb and things got blurry. We walked. At one point we had to navigate down an extremely steep, loose portion of trail and the medic supporting me lost her footing and almost landed on her butt, but still managed to keep me upright. And we walked some more. Radios chattered, a meeting place was agreed upon, we walked through some aspen branches I had to duck to avoid them slapping my face, then we emerged into a driveway where an ambulance and firetruck awaited. At this point, all I could think of was lying back on the gurney and sleeping, but once I was lying on it, I tried to close my eyes and realized I was still buzzing and couldn't relax. It was quick, though, we were moving almost immediately. 

As they were loading me up, I kept thinking about them doing the same with my pale, bruised, weak toddler, and how I wanted, more than anything, for it to not be happening. And since it obviously was happening, to have it be me. In some really weird corner of my brain, this happy bell kept going off. "It's me this time! It isn't him! He's fine, and I finally get to be the one the train hits. Thank goodness it's me." It was honestly, and I know this is so far beyond messed up I haven't even tried to process it yet, a weird euphoria. Like this huge relief that finally, finally, I get to pay my dues and this is finally the massive inconvenience we've known was coming and we are so long overdue for. I know. I know. Some day I'll have to face this insane psychotic survivor's guilt and expectation of the other shoe dropping that I feel over Daniel's whole thing and accept that things just are, and are not based entirely on whether or not one deserves them or is due for them. But for my readers not entirely aware of the premium placed on guilt, self recrimination, and the acceptance of less than ideal situations as exactly what one deserves in certain rural, ultra-conservative religious organizations, just know that there is precedent in my childhood and young adulthood for such weirdness to be very deeply rooted. Tossing off a home sewn bonnet doesn't always mean tossing off all the weighty weirdness one has had sewn into ones mind while one was young.

The EMT asked the usual concussion related questions. I told him I honestly didn't think I was concussed, that at no point did I remember my head taking an impact, just my face. I told him my neck hurt, but not vertebrae, it just felt like the muscles at the base of my skull were starting to stiffen up. He told me I was being surprisingly calm, to which I laughed a little and told him this wasn't the first bad thing that had ever happened to me. I then added that my son had been diagnosed with cancer, and after you hear news like that, anything less is just... not a huge deal. He asked about the type, then casually added, "Me, too." Which was how he came to tell me about his own brain tumor and lack of treatment options, while I tried to properly convey, through lipless mumbling, how freaking much life can suck sometimes. 

At which point he shoved a needle into my wrist and gave me morphine to shut me up. As it was kicking in, I realized I had still not called Bobby to tell him his day had just careened off the rails, so I called him to tell him what I had done, carefully choosing my words by their lack of lip-requiring vowels to keep him from freaking out. "So, I crashed my vike and messed uff my face", I told him, then braced for the reaction I knew was coming. Because I know him and his second reaction is generally loving concern, but his first reaction is to disect, disseminate, assign responsibility and pinpoint the point at which things began to go wrong. 

"Can you meet me at St. Anthony's ER? They're taking me there by ambulance."

"You did WHAT? Why? What did you do? This is the last thing we need. I cant believe you did that. What the hell? I thought you were more careful than that."

(Feeling like a scolded child) "Well, I went over the handlebars and screwed up my face. I'm sorry." 

"Are you okay?" (Bless him, I love that predictable man so much.)

"Yeah, I'm just mad I did it." 

"Well, I have to go pick up trash and get some work done so I can take some time off. Unless you need me to come right now." 

I wanted him with me more than anything, someone solid and familiar because everything was pain and weirdness, but I lied.

"No, I'm fine. I want you with me, but I'll be fine."

And then I shut up, because morphine, until we got to the hospital and I had to sit up and move, at which point morphine kicked my butt and I was pretty sure I was going to vomit, which wasn't an ideal outcome considering that the only exit route for said vomit was through my mouth. But I held my breath until we got inside, and anti nausea meds fixed it. Somebody manly took my jersey and bra off and put a gown and heart leads on, trying to be deferential until I told him I wasn't shy, and somebody else put a collar on me, which was a special kind of awful because my sternum was skinned and I couldn't breathe through my nose, clogged with dirt and blood, so I had to push my chin down against the collar so I could keep my mouth open to breathe, which pushed the bottom of it into the bloodies on my chest. Surprisingly soon, they announced Bobby was there, so I prepared them that he might pass out because he isn't the greatest with blood, and as his feet appeared under the curtain, I was so relieved to have him with me. 

Except it wasn't him. It was a brother of a girl about my age down the hall. He stopped inside the door, his eyes big and frozen on my face like a deer in the headlights, and I mumbled, "I think you have the wrong room." As soon as it talked, he seemed to definitely realize he wasn't in the right room, and scurried away. Poor guy.

They bumped my transport for a more serious one, so I had to wait for another ambulance, during which time Bobby finally showed up, found his way to the right room, got a peek under the gauze on my face (that the nurse put there when she helped me to the bathroom after the poor random stranger saw me "so you won't scare any children") and didn't faint. I wanted him to never, ever leave me, but common sense won, so I sent him to arrange getting my car home from Breck, pack a suitcase for us and another for the kids, take kids to my friend Ginta's house, and meet me in Denver. I thought it would take about an hour to be transported to Denver. It took three hours with weekend traffic. I spent it in a morphine haze, observing that the morphine didn't do much for the actual pain but it did make me sleepy enough I could temporarily check out in spite of it. 

At St. Anthony's in Lakewood, the trauma surgeon gave me a nerve block in my face and dug some of the gravel out, but soon realized the futility of that endeavor since the nerve block was only effective for part of the injury, and decided to finish in the OR under general anesthetic. Bobby showed up, hung around, then left to get some food or coffee or something, then came back. I got clindamycin and dilaudid at the same time and nausea hit hard, so more zofran as well. Finally we got word the OR had been needed worse by someone else, so my suite on the sixth floor was ready for me. OR was rebooked for 11:40, so we settled in to wait. They pushed me to pre-op, only to hear, around midnight, that the one surgeon and anesthesiologist on staff at night had been, again, needed worse in a different surgery. Several hours later, the same news. And then the lights blinked off, then on again as the generator took over. It's all a bit fuzzy, but I remember shaking and holding my breath for what seemed like hours from the pain during an endless wait while computers rebooted and orders for pain meds were resubmitted, and at the worst possible moment, with all the pain meds worn off, the pre op nurses also delivered the news that as long as the power was provided by generator, there would be no surgery. And then I went ahead and lost my crap. I started to shake and cry uncontrollably, apologizing, saying I understood that I wasn't top priority and that was a good thing, it meant I wasn't dying, but this had happened already at noon and I had been lying with bloody gravel and my lips hanging inside my mouth for sixteen hours already, and I just. wanted. it. to. stop. They had refused to take the gauze off my face, covering the wound, even though I said it felt as though it was starting to stick for hours already. Nobody had actually seen my face since ER intake late that afternoon. They had been just dribbling more saline over it, not believing it was sticking since it was wet with saline, but my meltdown finally convinced them to try, and as I suspected, they peeled back the massive pile of gauze pads, saw the mess underneath, and suddenly got a whole lot more accommodating and less condescending of thirty-three year old female with facial laceration who had been bumped from surgery three times already. 

All night, B sat there. Once he joined me in Lakewood, he didn't leave, and nothing, no pain meds, nothing was as comforting as opening my eyes to see him there, rocking in his chair, trying to doze, jerking awake whoever I moved to make sure I was okay. Solid, present, there. This is why I love him. Once he works through the "why" of a crappy situation, he puts it behind him and he cares, ridiculously deeply. He's difficult until things get difficult, and then he's a rock. He puts his head down and he plows through and no matter how things keep piling on, he takes it on. He's a pretty good person to have on ones side in a crisis. 

About that time, the surgeon stopped back by, obviously agitated, yelled a little about how he was trying his hardest to get to me but now he couldn't because the power was off, and he had a plane to catch, and he was upset too about my having waited all night, told me he thought he'd found someone to replace him, and left. And with him, hope abandoned me. They pushed me back up to my room, pain  and nausea meds finally became available, and I slept. When I woke up, it was because it was day and I was again being wheeled to pre-op. 

And there, a tall, young, angular man said he was the plastic surgeon who had rearranged his day and rescheduled his morning clinic appointments at his swanky Boulder private plastic surgery practice to come suture the facial laceration he had heard about at the end of his shift the day before. So how about we get that cut closed up, he said perkily. Oh, yes, please, I mumbled under the gauze. Alright, he said, let's take a quick look at that. He plucked off the gauze and froze a bit, then immediately swung around and started barking orders and saying things like "don't do that here, let's just do that all in the OR", they pushed a sedative into my IV and the last thing I remember him saying is "you probably won't remember much after this". 

I felt like I jerked awake, confused about where I was, and Bobby stood there with an old friend we used to bike with, back when we lived in Summit County pre-kid. I tried to smile and welcome him, but the strange sensations in my face yanked me back to reality. Bobby took a picture of my face and showed it to me, and I can't even explain the relief of seeing it put back together. My mouth was no longer full of gravel. My lips were enormous, and criss-crossed with stitches, but they were in the correct general location. My cheek was no longer a squishy, dangling flap, and no lip-gummy worm flopped across it. 

Later, when he got a break at his clinic, the surgeon stopped back by and I thanked him for galloping in on his white horse and rescuing me. He shook his head. "I'm not sure about the white horse part. I was here when you got here last night, I could have done it then if I had known they weren't going to get you in. And I could have done it at any point during the night if they had called me. You shouldn't have had to wait so long." 

I like this guy. 

The rest of the stay was boring stuff. I slept a lot. Swelling hit epic levels sometime during the first night, so they called in an ear, nose, and threat specialist, since one of my saliva glands apparently got annihilated and couldn't be located and reattached during surgery, and they thought the fluid accumulation in my jaw and neck might be saliva. But by the time they showed up, I was up and moving around, out of bed and sitting on the couch, and the swelling had gone down, working it's way from my jaw to my chin and neck. I finally got some food, puréed chicken noodle soup, and managed to syringe it into my mouth. 

The kids stayed with Miss Dinta (my friend Ginta) the first night, then my parents dropped everything, jobs, summer projects, yard full of animals, and drove up from Kansas to stay with them. In my absence, my mom mommed my boys and did my laundry and dishes. 

This is probably it for breastfeeding. When I got home, two little boys were completely freaked out by my new face and stared at me with big eyes. I picked them up and they melted into me, heads on my shoulder, and told me how much they had missed me. Little brother was afraid of my face, couldn't quite trust it was me, but when he finally looked up and met my eyes he relaxed, sighed, and snuggled into my arms. It wasn't long before they were asking to nurse, but I stuck band aids on my nipples and told them they had owies too, and they accepted my lie without question. I will admit, I'm both really excited about having my body be my own again, and really freaked out because I have witnessed Daniel bounce back from some pretty major trauma with the help of breastmilk, and I am allowing an extremely valuable and irreplaceable resource to dry up. Painfully, I might add. How long does it take for the pain and hardness to go away, anyway?! 

At no point in his treatment has Daniel ever been without the dietary supplement of breastmilk. Probiotics are discouraged during treatment due to their very nature of being bacteria- they have a risk of harboring not only good bacteria but also not such good bacteria, I guess? But breastmilk has saved us after so many rounds of antibiotics. Between the ooligosaccharides that feed the few remaining good bacteria in his gut and the good fats and personalized antibodies, he has never seemed to need much nutritional support aside from it. But it has also become increasingly difficult for me to keep doing it, both socially and physiologically. He has been reluctant to let go of it as a source of comfort, even after months of constant redirecting and trying to find other ways to help him emotionally process his world. I have been stuck walking the fine line of letting him have enough to benefit him physically while being sensitive to the social stigma of nursing a preschooler. Public awareness of full term breastfeeding has really not hit the places we've lived yet, and it gets exhausting constantly being an advocate and activist and educating people about why I haven't yet weaned a four year old. (Four is a common age for a healthy, free range child to wean in cultures that accept self-weaning, by the way. I would imagine the fact that my four year old has not yet chosen to do so has something to do with, I dunno, HIS CANCER TREATMENT.) In the last year, however, his latch has changed. It was never great. It has been uncomfortable to breastfeed him from day one. But now his jaw and mouth are maturing and it is getting even more awful, and the nursing aversions are about as powerful as during pregnancy. So I'm conflicted. I feel stupid letting things dry up and losing this invaluable resource, but on the other hand, here is my chance. He has not been able to nurse for ten days now, due to all the meds I've been on. He's starting to work through his stages of grief. If I let him do it again, relactate, no telling when he'll decide to quit on his own. 

Little, I have fewer qualms about. He is still quite enthused about it as well, and quite crushed that they have been unavailable, but he is ridiculously healthy. His latch, which has never been painful like Big's, is still comfortable, and I have no problem with nursing him past two years old, but the problem with tandem nursing is you almost have to wean simultaneously. 

My dad left the day I was discharged to go back home and deal with things there, and my mom stayed until just the other day. It was so great having her here. I mean it really doesn't matter how old you are, and how much of an adult you have everyone fooled into thinking of you as, sometimes you just need an adult. An adultier adult. And your mommy. 

I am still feeling beyond wiped out, for some reason. I don't understand it. Aside from my reassembled face, which has lost 95% of its swelling and is healing amazingly well, my body is fine. So where is my stamina? Why does a flight of stairs suddenly have me sucking wind? 

Except, I guess, I did have a ton of narcotics. I quit cold turkey and embraced the pain when I started to realize that I was starting to feel anxious and shaky whenever they wore off, and was starting to think I needed them without considering my pain level. Also a ton (and a half) of antibiotics. Also general anesthesia. Also not only physical trauma of tearing off part of my face, but the emotional trauma of not being able to deal with it until the next day. Also I abruptly stopped eating and developed a complicated relationship with food, having to decide if the pain of eating was worth it. So I lost ten pounds the unhealthy way, by forcing my suddenly inactive body to cannibalize itself.

I still try to get out and do something at least once a day, if only a trip to the store. I had one mini meltdown, the night after I was discharged we went to a free concert by the lake and several thousand people did double takes when they saw my face, but I'm attributing the resulting blues to my sheer exhaustion that night. I hit a wall and couldn't go much further, but still forced myself to because I desperately wanted things to feel normal, so I dragged everyone to the concert and immediately regretted it when the wind blew painfully on my face, we had to walk fifteen minutes from parking, and the exhaustion hit hard as soon as we sat down. I'm not really self conscious, aside from that night. Mostly I feel like I'm in a weird social experiment, constantly noting the reactions of people around me. They want to stare, but try to pretend they aren't. They start to smile at me, then see my face and short-circuit, then studiously ignore me. It's been interesting. I've been them so many times, I know the feeling well. Why can't we just genuinely not see the ways in which we are different? Why does otherness insist on setting off alarm bells for us in spite of us knowing perfectly well that we are all the same deep down? Not just physical disfigurements, although those are huge, but inherent differences. I was forced into a healthy amount of discomfort this winter during the week Keystone had a massive black ski summit, as hard as little extremely Caucasian me tried to deny it and act totally normal. No, I didn't feel endangered. No, there is no specific bias I carry. It was just being so surrounded by otherness that made my circuits blink a little, and the more ashamed of that fact I felt, the more crummy I felt about myself. I can't help that I was raised around only white and brown people, so anyone darker than Latino automatically seems exotic and other-ish to me. But then my two year old, utterly oblivious to subtext, blew my cover by having a meltdown over having to ride in an elevator full of very large, very black men. His reaction was mine, just on the surface. He knew he was perfectly safe, but the otherness just fried his circuits for a minute and he had to back up, release some emotion, and process. It is a very good experience for me to be on the other side of those sorts of reactions, to be the Other. It is an experience I have missed out on most of my life, unless you count being the only kid in the only openly dysfunctional family in Religious Mr. Roger's neighborhood growing up. 

It will be temporary; once the icky, cheesy grossness sloughs off and reveals the new, pink skin underneath, it will be less noticeable. My mouth and cheek may regrow the nerves and muscles needed to stop the paralyzed droop and my lips may eventually need another surgery to get a semblance of their shape back and be able to close them, but already the scars across my cheek where the shreds of skin were tidied up and sewn together are smoothing out, a testament to the tiny, skillful surface sutures placed there by my new favorite plastic surgeon. My otherness is fading fast. My social experiment in being unenviably extra-ordinary will end soon, as will my opportunity to be bemused by the way people interact with people. 

My surgery was on Monday, June 26. On my birthday, Friday the 30th, B drove me to Denver, I popped my last pain pill and steeled myself for an ordeal, and found my way into the lovely, calm interior of a Boulder private plastic surgeon's office. I won't lie, it was trippy. My only other experience with plastic surgery was through my mom's breast reconstruction after her mastectomy, and that was an office located in a cancer center. The other patients were mostly simply trying to get their lives back, trying to put their horrible experiences behind them by rebuilding their bodies to resemble something they were familiar with. This was a very different experience. The conversation was flowing in the crowded waiting room. Women openly discussing their perceived flaws, the work they needed. In my world, it is impolite to those around you to discuss the things you hate about yourself, because those around you may possess those same features or worse. A mom with two kids on vacation needing Botox, another mom excited about being able to fit in her jeans again in a week, another micro analyzing her own and her daughter's faces for sun damage and areas that needed more "fullness". It was so, so foreign. Talk about otherness. I realized no physical differences will ever separate me from other humans, or make me more uncomfortable around them, than class differences. I was the crude one there, the philistine, with my eight year old purse with the shredded carrying strap, my river sandals, my snagged yoga pants from Old Navy, my sun damage and patchy eyebrows and gross mountain bike injury. The receptionist immediately identified me as "The Mountain Biker" and asked about my crash. I spoke a little louder than needed, knowing I had center stage, as I gushed about how happy I was with my new face. Because the honest truth is, I judged the Botox Belles just as much as they judged me. I realized I carry a lot of judgement toward women who feel their lives will gain meaning when they conform to some arbitrary standard of beauty, and spend so much money to attain those standards. I trust the people I perceive to share my values and interests more than I trust someone I perceive as self absorbed based only on one facet of their lives. I considered what sort of person would wish to provide the services these women seek- one who sees an opportunity to make a lot of money, or one who sees the same flaws these people (I've been saying women, but there were several silent men there as well) see in themselves? 

Once in a chair in his office, the stitch removal hurting like crazy, I told him again how surprised I was that I still recognized myself, how grateful I was he had come in to put me back together, and how I probably had not been giving plastic surgeons enough credit, seeing the tiny, precise sutures and how smoothly the wounds were healing. He nodded. "Yeah, most people think we only do boobs and facelifts, but reconstructive surgery is a huge part of what I do." 

And now I wonder even more- how does someone go from reconstructing the aftermaths of horrible accidents in the morning, to liposuction and injecting Botox and butt fat (or something) into faces in the afternoons? How does one switch between perfecting the bodies and faces of Boulder's most vain elite to fishing hamburgerized saliva glands from Summit County's most stupid, and everything in between, without experiencing completely disorienting culture shock?  Our conversation switched to Daniel's chemo appointment that morning, and how resilient people can be, and he told me about a friend who survived cancer to return to pro hockey. I nodded. "Humans are amazing." He shook his head. "Not all of them", he muttered under his breath. So many answers to so many questions I hadn't asked.

So there you have it. Since Friday, I've slept when I can, which hasn't exactly been easy, first because of steroids and itchy antibiotics, then my painful face, kids who are adjusting to not nursing, and for some reason, I suspect the lack of gut flora thanks to the antibiotics, constant heartburn. My biggest issue currently is that I am too easily exhausted and my face is too sensitive to go outside for long, which is beyond frustrating. My kids are getting too much screen time and all I want to do is what we did before last week- live outside. 

In the meantime, we changed Andy the Dog's food and had another diarrheapocalypse. We came home a few weeks ago to poop soup everywhere, soaked into the carpet pad. It was the last straw. The carpet was already smelly and we already didn't trust it to not be growing bacteria harmful to Big's fragile immune system, but after the pooptastrophe, we decided to find whatever cheapest vinyl floor covering we could and yank out the carpet. However, the layout of our house is incredibly stupid and obviously not designed by someone who has ever lived in a house. The enormous kitchen bar crowded into the walkway and living area, leaving about six feet left for living room furniture and a kitchen that was exhausting to cook in, running from one side to the other as one does ones thing. So before we could lay flooring, we demolished the bar, salvaged the cabinetry and reconfigured it, making a much smaller, more sensible kitchen. That part isn't costing much since we're reusing most of it, but it has been massively time consuming and inconvenient. Because the one thing you should always do following trauma and surgery, when you still have a sprained wrist, is a home remodel. I've been far less helpful than I planned on being. Handyman has been far more gracious about that than he would have been in the past. 

I guess all in all, in a messed up way, it has sort of been a vacation. I mean, there were no cocktails on a beach or romantic hot spring soaks, but I did get narcotics and a romantic shower where I sat on a hospital shower bench while the love of my life held the shower head for me while I cautiously washed away all the gross drainage and cheesy layer from my face while we played "count the bruises" on my body. There were no kids or responsibilities for a few days, so we got to just hang out together and talk and reconnect. We needed to do that so badly. B was there for me, with me, the whole time after that first afternoon when he ran around like a maniac trying to finish work and get to me. Amazingly, solidly, comfortingly there. The one person I wanted and needed was right there, translating my mumbling and typed requests for pain meds, helping me up and down, trying to cheer me up. I can't even tell you the difference it makes to go through an ordeal alone, versus going through it with someone who would do anything for you. Even loan you his bike in the future. Even hold your hand and tell you you're pretty when you resemble a zombie from the Walking Dead. I needed to be cared for the way he cared for me, he needed to know how much I appreciate him being in my life. Next time maybe I won't remove my face to get a date. 

Concessions, confessions

Hi, and welcome back. I'm currently typing on my phone, lying in bed between two sleeping little boys who are still wearing the clothes, minus shoes, that they wore to the Wave: light, water and sound festival in Breckenridge last night. They are still wearing now-fading glow sticks, and somewhere in the covers are the felt bunnies they decorated with sharpies at the art booth, bunnies they were still clutching when we carried them in to the house from the car last night. In fact, the entire family is still passed out, even the dog, who I'm pretty sure is developing prostate problems or diabetes or something else geriatric and inconvenient, because he generally needs out about every three hours to pee. Of course we moved to a house without the possibility of a doggy door around the same time our dog developed issues with frequent urination. But even he has not yet become conscious enough to wobble his way to the door and whine to be taken out. 

Life has been, well, pretty okay lately. At least for me. Bobby might have a different opinion, since he is the one out exchanging time for money on an erratic schedule every day. This week is the "official" start of summer, school let out two days ago, kids are free, parents are free, and Bobby has agreed to try to take two days off every week. They aren't weekend days, of course, but that's okay. Two days a week without his phone ringing at random, completely inopportune times, two days that we can actually plan things as a family, is an exciting prospect we haven't had in...(mental calculations...carry the two...) a really long time. That isn't to say he hasn't had days off, but he hasn't known they were going to be days off when he woke up on those mornings. 

The weather is warming up at 9,000 feet, finally, and we are taking full advantage. We planted grass in the ill-gotten and guiltily enjoyed fenced area behind our house, so until it sprouts we can't go back there, and there isn't even a remote chance I can keep these two little natives in the house on nice days even with all the YouTube videos in the world, not that I'd want to, so we spend almost every day out exploring the mountains. In those snuggly moments after they wake, I ask them what they want to do that day, and we build our day's plan around their requests to go to certain parks. I generally try to feed them and clean house in the mornings, then we pack some food and sand toys in the bike trailer, and leave for hours. 

Yesterday, we departed from our usual routine, a bike trailer pull to a park. I pulled them up a steep gravel road to a little beach area beside a stream, where we spent hours wading, digging, collecting sticks, building bridges for our matchbox cars and excavating equipment. No cell phone service up there again made me realize how many of their adorable interactions I miss because I use their park playtime to read emails, respond to texts, scroll through Facebook. On our two-day camping trip to Moab a month ago, which we spent in a dead zone in a canyon, I realized this and came home delightfully unhooked. For the next week, I stayed that way and it was nice- I didn't read the news, so it was almost as if it wasn't happening, I didn't see the Facebook memes so I didn't have to experience an emotional response, it was just me in my small world and it was lovely. Of course I also know fully that my privilege afforded me that luxury, that the news and conflict that elicits an exhausting emotional response from me upon reading it is the day in, day out reality for so many others. While I unplug, refugees still die. Bombs still explode. Injustice still wins. Healthcare that we desperately need still gets shoved down the garbage disposal. 

But in Summit County, icy water still flows musically downhill. Aspens sprout tiny leaves, the green tinge on brown hillsides deepening by the day. Sun warmed pine sap inches its way down rough bark, birds and squirrels talk, and as trails dry, mountain bikers and hikers crawl like ants through networks of trails interrupted by melting snow. And we are here to witness it. In our part of the world, it is possible to just be. To sit in the intense mountain sunshine and be surrounded by weightless air, the sounds of water and happy kids, caressed by cool breeze, the scents of pine and sage and wet earth all around as time passes unnoticed, days passing, then months...until summer has turned chilly and one awakes one morning to low, milky cloud cover and realizes winter is here again, with its cabin fever and influenza and seasonal affective disorder.

Daniel's latest chemo appointment was two days ago. It's going to be a fun week; his first dose of steroids yesterday morning was already creating a marked personality change by early afternoon. We don't always experience it so noticeably after only one dose, but when we do, we know we are in for a rough week. It is a really valuable reminder to me of how easily manipulated our personalities, the things we consider so uniquely us, really are. I have experienced this myself, of course, with the hormonal upheaval of five attempts at pregnancy, hormone support through pregnancy, and various attempts to find birth control that does not warp my happiness baseline and turn me into someone even I don't trust to be a nice person. I have witnessed it growing up with parents who walk a fine line, making constant decisions of whether to overcome depression and other mental afflictions by sheer force of will or to medicate, accepting side effects as less disruptive to their lives than not medicating. Mental illness has always been a louder, more complicated conversation in my life than physical illness, and I say that as someone who has been support staff (in varying degrees) in three different cancer battles. But watching someone who has only been alive for 53 months, still fairly emotionally unmarred and beautifully innocent, someone incapable of wearing the masks we adults do, take a few small, bitter, powdery pills and turn into a completely different person as a result of slightly increased production of stress hormones, that is powerful. That is a lesson in mental health and tolerance we all need to take note of. We are all the sum of the interactions and synapses and chemicals that make up our physical states, and changing just one thing reveals just how fluid this thing we call "self" really is. That fresh realization always blows my mind and quiets the festering judgements I build up against those in my life I have been measuring with the same yardstick I apply to myself. It also reveals the full weight of those "for better or worse, in sickness and in health" commitments we make to each other. We so rarely take into consideration how easily people change. 

And I'm back from the rabbit trail. Daniel's lumbar puncture was uneventful, although he was very slow to wake up and it took about six hours for him to be able to walk in a straight line and not stumble over the floor and his own feet. His first few steps upon waking were a disaster that ended with him on the floor. He recovered quickly, scrambled back up, but a nurse hurried for a wagon so he wouldn't have to walk out of the hospital on his own feet, since they weren't really working yet. 

Our last year of treatment starts in August. It is now I am realizing how his being a boy is making his treatment longer. I mean, we were told from the beginning that boys have longer treatments than girls due to the risk of testicular relapse, but that was not something we thought about until now, when some of the girls who were close to us in frontline treatment are nearing the end of Maintenance already, and we still have over a year to go. Our nurse told us we will probably be shocked at how much better he feels almost immediately after he stops treatment, how much he will probably start growing, how his energy levels will soar and his attitude will improve. I am cautious about believing it, having heard other moms also talk about nightmare detox rashes and sickness and immune systems that are slow to recover on their own after so many years of being suppressed, not to mention things like central lines being calcified into arteries after having been in there for over three years. But that stuff is temporary in the big picture, and he has the rest of his life, aside from the next 14 months, to live chemo-free. That is exciting. I won't even go into how 30% (ish) of kids can develop potentially life-threatening long term effects from childhood chemo, and around 90% have at least one chronic effect. He isn't likely to walk away from this completely unscathed, and if the effects he has are mental, we will most likely never know for sure if it came from over three years of relentless chemo in his spinal fluid, bypassing his blood/brain barrier to roar through his developing brain and personality, or the murky gene pool he sprung from. 

******************

So that was three weeks ago. This has sat on my phone (because I blog on my phone, thumb-tapping, these days, because once I sit down and commit to writing, I immediately have two kids in my lap, pulling my hair, fighting, accidentally scratching me as they fight to get inside my shirt, that's a whole other thing) while I've been too busy to write. 

The weather hasn't been great the last week or so, we've had some rain and wind, so I haven't been out as much on the bike, which means I've been doing the thing that had me so pent up and beside myself all winter- staying home with them. The thing that had me in therapy this winter, crying in frustration because while I'm still breastfeeding a kid whose body is already a toxic waste dump, I can't take meds for the ADHD that makes me a fun and exciting and exhausting and irritable and unreasonable person, meds that would pass into my breastmilk and possibly alter Daniel's already at-risk brain. I will be honest, even a week at home, inside four walls, forcing myself into a housemommy mold instead of just momming on the fly under a big, blue sky in a beautifully uncontrolled environment has had me uptight and more than a little resentful of Bobby, out there working, problem solving, having adult conversations, doing varied and financially profitable things. 

I decided, this spring, to just put a lid on my mommy guilt and do something strictly for me this summer, something on a schedule that was unaffected by me, so I couldn't just cancel when it was inconvenient. So I decided to do the local mountain bike race series. Because 

nothing is quite like the sheer therapy of flying over a narrow trail under the sky, pushing oneself, challenging oneself, going fast, balanced on a moving bit of aluminum, carbon fiber, and rubber, with nothing but physical exhaustion and survival to think about. With all that high intensity resistance training of pulling a hundred pounds of kids and gear eighty miles a week, I should be in good enough shape to race, right? Turns out, no. My winter of inactivity, skiing for two hours a dozen times, a few walks with the dog, a few randonee climbs up and powder turns back down the hills behind our house was not enough to kick off my summer with the endurance competition legs needed to be in the top 50% in my race category. I'm struggling to keep up. That part is okay, exactly what I need to stay motivated, but it turns out committing to something when one is a mother and stay at home wife of a person with an extremely erratic work schedule is harder than anticipated. If it weren't for my friend Ginta, who has her own crazy life and busy schedule and two kids, I'd have probably dropped out already. She's been my rock. When she was in my position, with little kids, I did not yet have kids so it didn't occur to me she needed a rock. I really regret not being there for her, ten years ago when we met, me looking for girlfriends in an outdoor community that is like 90% dudes, she newly pregnant but still fooling herself that she could have kids and maintain a crazy outdoor life, like she has been for me. 

It has turned out to be unexpectedly hard because each race requires not only to show up on race night, but to preride the course so one is not grinding up a hill with no idea of where the top is, then bombing down a course one is unfamiliar with at a speed faster than one should be riding a trail for the first time. And because my fitness is not there and I am constantly sore from riding, I try to do the preride enough in advance I can take a day off before race day. This means I have to preride on a day Bobby has the maintenance line (Sundays and Mondays) and is on call, so it isn't smart to leave him with kids, lest he suddenly have to go out on a call. Which happens a lot. All that to say, I now realize I probably have no business doing it, as much as I'm loving it. But I'm committed, a local bike shop paid for my season pass and gave me a jersey to represent them out there, so I'll do it if it kills me.

So yesterday, on his one day off this week (because he's already caved on his commitment to take two days off due to pressure to finish projects in the gaps between bookings) Bobby went for a quick mountain bike ride in the morning, then took the kids, me, and my bike to Breck to preride all three of the stages of the enduro race happening there tomorrow. I had a mechanical failure that rendered me unable to ride, so I had to buy new parts at full Breckenridge price, work on my bike, then Daniel fell apart because he wanted to ride with me, which turned into an endless exercise in patience getting him down a long hill, about ten steep, loose switchbacks that didn't recognize his feet as brakes on his Strider bike. I watched helplessly as his speed got away from him, he couldn't stop, and had a big, dusty crash in the trail, then dusted him off and coaxed him back on his bike. By the time I was actually ready to preride, everyone was already tired, hungry, and hot. I did the two short loops, which only revealed that I really needed to ride them more, because they are quite technical, then the eight mile loop of the big stage, and seven hours later, we returned home, my guilt over having subjected them to such an exhausting day overwhelming. 

Therein lies the basis of all my conflicted feelings about motherhood, having a sick kid, wifing, housekeeping, and still trying to maintain some level of self and identity apart from them. The guilt. I have guilt when I resent my kids for getting in the way of my plans for escaping the house. I have guilt for escaping and leaving them with Bobby after he has had a long, exhausting day at work. I have guilt for snapping at them when I am pushed beyond the limits of my patience, when we are at home and I am feeling guilty for not having a clean house and everything I do, they follow me around undoing, and I just want one thing to go as planned. I feel guilt for envying Bobby's job some days. I feel guilt for listing these things without the accompanying disclaimer that I love them more than life, and even if I were drowning, they are the reason I would fight to swim. I feel guilt because I only have two of them. I feel guilt because even with only two of them, I still miss some of their moments, still don't give each the one on one attention they deserve. I feel guilt because they sometimes request peanut butter on a spoon, nothing else, for lunch, and I give it to them. I feel guilt because I can't get the house clean without giving them screen time, and I also feel guilty because the house stays permanently trashed when I don't give them screen time. 

And then, God forbid, my husband mentions a particular shortcoming, hears me snap at them, chastises me for dropping an errant f-bomb in a frustrated moment, notices the pathetic nature of my attempts at cooking, observes that the bathroom is starting to smell like an outhouse, that one cannot walk through the house without a lego-related injury, that breakfast should include protein, and that big tray of guilt, balanced so precariously on my head, breaks. The guilt cascades down over me, sticky and messy, all jumbled together, each piece so indiscernible from another I have no idea what to even point to as the cause of my current mess. All I know is that he has just confirmed as unjustifiable all the things I have been trying so hard to justify. So we have a fight, because my lifeline consists of removing myself from the guilt, to constantly tell it to stay away from me, that I don't deserve it, so hearing it noted that even one piece of it is, in fact, deserved, means it all sticks to me. And feeling it all stick is just too much, too yucky, so I fight to get it off me and back on the tray as fast as I can. Which, of course, leads to more guilt. Not only have we torn each other down, we've done it in front of the kids. 

We need a vacation. Too bad we feel too guilty to leave our kids with anyone else to actually enjoy one. I thought putting my foot down and demanding some me-time this summer would be the answer, but it isn't. Bobby doesn't get to have him-time if I get me-time, and that isn't fair. There are only so many hours in a day, not enough for us both to recharge and be ready for the next day. 

I guess I am coming to the realization (again) that people don't just change because their situations change. Bobby's overdeveloped sense of responsibility is again causing him to withdraw, to silently put his head down and plod through the insane amount of work and drama at work, making him emotionally unavailable and impatient with me and my constant need for reassurance. The few reserves he has at the end of the day goes to his kids, as it should. My insecurities and inability to calm myself, focus, and actually finish a task if there is the slightest interruption has us constantly washing around in a state of inconsistency. Repetitive, moving outdoor exercise is the only thing that orders my thoughts and calms my jittery brain, and being out and on the move on my bike is the only time I feel truly calm and happy, which is exactly the sort of thing that is so hard with small kids. In the meantime, because he knows this about me, Bobby sacrifices his own workouts to allow me a little time to escape from my own head, and he gets less healthy, has less energy, while I build muscle, gain energy, feel like, upon returning to the house after a ride, that life cannot possibly get me down anymore.

Lest you think I'm complaining, I'm not. I'm pretty sure if we all stopped trying to wear our masks, we'd all say similar things. I think we all need to take off our masks. I'll go first. 

I'm not a natural at this whole parenting/wifing/adulting thing. I envy people who are. But if you aren't, I guess I keep a confessional sort of blog so you can know that you might fail too, but you are far from alone.