Losing my cape

Hello, dearies! 

I wrote an entire confessional sort of post because it was stuff in my head that needed to be out of my head...you're welcome. But I felt bad throwing the surface stuff in there with all the deep stuff and forcing you to slog through it just to hear about our holidays, so I'm just going to give you a lovely surface update and warn you when the other one is coming so my readers (like my husband) who think I need to spend more time recording our activities and less time "rambling on like a woman" about those exhausting feelings can check in, read up, and be on their way. 

Our holidays were merry and bright. Bobby's family was here the week before Thanksgiving for a chaotic two days of cousin time, all four cousins fairly close in age and our little house's walls almost bulging outward from all the living inside them. There were beds everywhere, kids everywhere, toys everywhere, coats and boots and hats everywhere, food everywhere, and so. Many. Legos. Everywhere. My parents came for Thanksgiving, and we drove to Eagle to my grandparent's house for Thanksgiving dinner, then my parents spent several days at our house playing with their ridiculously adored grandbabies. Those same baby's godparents Uncle Leroy and Aunt Mary came up for Christmas while my parents stayed home doing homey things for Christmas, and we had an amazing two days of snuggles, snow, light drinking because we had nowhere to be, heavy eating just because, and lots and lots of playing with two little boys who now think it should be Christmas every time it snows. Then New Years. My parents almost cancelled their plans because I was lying low with a nasty little fever virus, sore throat and two days of uncontrollable shivering, joints hurting and skin raw from all those malicious air molecules slamming into it. But I rallied at the last minute, and Daniel called them in tears because he missed them, and with such blatant manipulation they resurrected their travel plans and came anyway. It was a fun time of zero rules for little boys, as usual when grandpa is here, and the last two days have been spent dealing with the grandpa hangover, reinstating all the rules that got thrown out for two days. My kids do not have many adults in their lives who are not willing to get down on the floor with them and be bossed around, but their grandpa takes it to a whole new level, making up games for them as opposed to merely playing by the rules of their own made up games. 

Bobby has been running around like a crazy person trying to stay on top of things as they break for our lodging company guests. He is enjoying his role this year as mere maintenance supervisor as opposed to in-county manager for this company as he spent 2006-2011 doing, but he spent November installing new appliances and furniture and doing tile work in multiple units receiving last minute upgrades instead of doing smaller maintenance issues that also needed done in all the other units, things like new faucets and carpet/tile transition strips, replacing light fixtures, reattaching towel bars and toilet paper dispensers, replacing faulty light switches, the million things that can go wrong in thirty homes and condos, so he is now trying to complete those items in the few hours per day the units are between guests, or as the guests call to complain. Not to mention we have had a few blatant refund hunters this season already who have required hours and hours of his time fixing every tiny non-issue they find so they do not have any reason to request a refund from our boss, no that that stops them. He had a week in December he visited two units every single day of their guest's booking for items completely inane, that most of us would not even think of complaining about- a specific TV channel available on the bedroom TV but not on the living room TV, a small sliver of wood wedged beneath a dresser, a small rattle in a bathroom exhaust fan. Not to mention the ongoing need for snow and ice removal on decks and walkways to keep our guests from landing on their flatland-accustomed backsides each time they step outside, the constant demand for firewood stacked for their easy access, and countless trips to the landfill to dump truckloads of their pizza boxes and beer bottles upon their checking out. 

I ambitiously thought I could attempt cleaning or inspecting for this same company, with two little boys tagging along. I have tried, but so far not a single day of me working has not turned into a disaster. I am unbelievably slow, stopping every little bit to deal with boys who are bored and destroying the unit I am trying to ready for the next guest. In one unit, they discovered a Christmas tree covered in glass ornaments within thirty seconds of me showing up to clean. I spent an hour making the beds and cleaning the bathrooms and kitchen, and two hours searching for all the shards of shattered ornaments, one dropped on the hardwood floor in the living room, one thrown onto the rough slate tile of a bathroom. Inspecting has not gone much better. They immediately invade the unit, jumping on neatly made beds, searching drawers for board games or puzzles they can dump, and occasionally falling asleep on couches, keeping me hostage in the unit until naptime ends. And probably as a reward for dragging them into units recently vacated by guests, we have started getting sick on an almost weekly basis. In the last month, I have had one stomach bug, one head cold, and one achy, breaky fever with sore throat. We're still all fighting boogers and scratchy voices.

I'm struggling with going one of two ways with preschool and Daniel. He loves it so much, and it is so good for him. His development is right up to mostly age-appropriate, thanks to his teachers and his interactions with his school friends, and it makes my heart go pitter-patter to see him interacting with kids his age like he's a real boy. But he has constant boogers, his counts have been suppressed more than usual for several months now, and someone is always sick at school. I have kept him in school longer than I expected to because he needs the time away from me to practice his real world skills, and so far we have not paid for it with an inpatient stay. However, I feel like I am playing roulette with his health every time I drop him off. For that reason, I am toying with the idea of moving him to full days so that the few times I do take him, he can get the whole experience. Or I should just take him out completely. Either way, what we are doing seems the least ideal- three hours per day, four days per week seems like maximum exposure for less than maximum experience. He wont be exposed to more germs by spending the afternoon there as well, but each new day is a new opportunity for a sick classmate to not be kept home. So far I have not scored a call back from the woman in the school district who handles such things, but I'm working on it. It isn't like he is missing much academically at this point, thankfully he isn't in regular school yet and won't be until the year his treatment ends, so I do have the option of simply ending his school experience while the sickie season is upon us. What to do... I hate decisions with no clear right answer. 

And now for the one where I talk about feelings and other exhausting and completely unnecessary things. 

Hi, and welcome back! Here's hoping your holidays were magical and your new year is happy. I've heard so many say 2016 was a good year to put in the rearview, and I'm a little bit there, but then...there were so many amazing times too. So that. 

2016 started right before Daniel started maintenance, which meant it was right after the last intense push through frontline treatment. Daniel's hair had all fallen out again, he was completely bald, pale, with icky brown circles under his eyes and unable to keep food down. His counts were crashed, so we stayed home for Christmas and New Year's, told everyone who loves us to stay away, and hunkered down hiding from germs. We were tired.  

2017 is starting in a much different, much better place for Daniel, but I'm not so sure I am in a better place, just a different one. I'm probably less exhausted and occasionally have a day when I forget Daniel is sick, so that's good. But I feel like I might finally be losing my mind. We spent a year in legit crisis management, cancer and hospitals and constant fear of things we could not see or see coming ending our child's life, and we sailed through it with our senses on high alert, our sense of humor intact, intuition practically buzzing, staying on top of complicated med schedules and clinic schedules and sleepless ten day hospital stays (not complaining, those could have been much longer) and pounding I-25, practically bumper to bumper at 80 mph anywhere from one to four times per week. Then we hit maintenance, so life on the cancer front became less intense right about the same time we lost our source of income. We had some savings, so we were able to keep the house we'd just bought, and got on Medicaid, which took a huge financial strain from us, but still blew through savings for groceries, other insurances and taxes, and vehicle expenses. 2016 was also a year of crisis management, but more because of financial fallout from 2015 than from cancer.

We are in a better place there, as well, now. We moved to Summit County and dropped our housing cost by twenty five percent (oddly enough considering housing in Summit County is around thirty percent higher than it is in Loveland, but we lowered our housing standards by about half when we moved), but then had double monthly housing bills for three months while we tried to decide whether to rent the house or sell it, then whether to sell by owner or list with an agent. We wasted a month trying to sell it ourselves, finally resigned ourselves to paying thousands and thousands in realtor fees, listed it with a flat-rate realtor, and six hours after it being added to the MLS...got an offer slightly over asking. As of closing last week, we are mostly back in the saddle. The house sold for enough more than our buying price a year ago that it replaced most of the savings we burned through last year when we did not have an income. Bobby is again working full time. Our budget is mostly under control and our housing is the cheapest it has been since leaving Kansas, even if the trade-off is living in a trailer park, paying them rent every month our house sits on their lot, and running a home repair business out of a very small house with no garage. No, we will probably never afford a "real" house up here, even though if we could bamboozle our way into a loan for one that was roommate friendly, our mortgage could probably be covered by the ridiculously high price of seasonal bedroom rentals or even AirBNB, and we could remove housing almost completely from our monthly budget. But what we are doing is sort of working...for now. 

So I have no justification for losing my mind now. I don't know what is happening. I have no short term memory lately. Seriously, I spend most of my time trying to remember what it is I should be remembering right now. Words...I try to speak in complete sentences and can't remember my words. In the last week, I have spent hours trying to remember words like "teleport", "justify", "allocate", and a word that means making several factors fit together nicely, that once again, I can't remember and it is driving me nuts. You do it with your checkbook, too. ..."Reconcile." I had to ask Bobby and spend five minutes describing it. 

And then there are the Horrible Dreads. I get them when I can't identify why I feel something is weird but know something is. That something has never been actually life threatening; when Daniel has had legitimately dangerous issues like neutropenia and positive cultures I've bounced into straight-up I'm-fine, upbeat crisis management. Nope, it's when there is nothing I can put my finger on that the Horrible Dreads attack the hardest. A fast respiration or heart rate, his skin feeling clammy when he sleeps, or just when I look at him and realize just how beautiful and tough he is, how wrapped around him my heart is, and how completely finished I would be if I lost him. Sometimes they hit when we make a memory so amazing I know it will be replayed in the future if I need to find a happy place should the Worst happen, and I don't know if I am enough in the moment to truly remember every detail. Or when a little friend relapses or dies and I realize how easily it could have been us. I start to imagine his little body failing in front of my eyes like I missed it doing the first time and wonder what I am missing again, and then the Dreads start pounding on the walls in my brain. They live behind the door I keep my back against, and sometimes they force it open, just a crack, and I see the ugly, dark awfulness behind that door, and before I can slam it shut again, they are on me, clawing and ripping. The only thing I can do is slam the door back shut and pile all my mental furniture in front of it, then deal with the Dreads that escaped, feel what I feel, and know that whether they are there to tell me something is wrong with Daniel or something is broken in myself, all I can do in the moment is let them make me a fierce mom willing to show all her cards and let her kid know how completely he is loved.

I still see germy goo everywhere I look, materializing not only on grocery cart handles and door handles and gas pump handles, but on the bag of apples or carton of pasta I just brought home from the grocery store. I have not given in to the urge to wash the groceries in a long time, but I won't say I'm not tempted. Cardboard packaging is surprisingly resistant to a wipe down with water and antibacterial soap. Those of you who knew me in our pre-leukemia life will know how incredibly weird this is for the adult who morphed from the child who had to stay up to date on her tetanus shots because she wouldn't stop running barefoot through the cattle pens and horse corrals.

With all that weirdness rattling around in my head, there is still the diagnosable stuff. I feel like my childhood ADHD diagnosis has become an adult-sized disruption lately. My frequent hyper focus as well as the lack of focus has become a problem. In hindsight, most of my life has been spent doing things that are either extremely therapeutic (like the bilateral physical activity of biking) or extremely well suited to issues with focus, like heavy equipment operation, housekeeping, housekeeping inspecting, painting (art) and writing. All things that allow me to go deep, deep into the zone, zone out all distractions, and just allow myself to be completely immersed in whatever I am doing, or listen to music, audiobooks or podcasts to hold my brain's attention while my hands work mindlessly. Nothing so wrong with that, unless one must be easily able to break out of their zone to deal with distractions. I know the most obvious ADHD trait is lack of focus, the inability to focus on any one thing and spinning from one thing to the next. As a kid, I spent entire school days drawing pictures in notebook margins because I couldn't manage to focus on a single math problem long enough to solve it. As an adult, I find myself feeling incredibly irritable if my kids dare to distract me from whatever I am trying to get done, be it cooking, cleaning, or even playing with them. I'm aware of the irony of that one. (But dammit, we are playing with trains right now. How dare you suggest we read books exactly one minute after asking me to get out all the train stuff? I'm not elbows-deep into building train stations right now just so I can quit and switch gears.)

I recently heard someone describe ADHD in terms of fish and barrels. Imagine a fish jumping between barrels of water. Barrels in this case would be activities, objects of focus, or trains of thought. A regular fish can jump into a barrel, swim around in it, jump to the next, swim around a bit, and so on. But with ADHD, that fish will either shoot at high speed from one barrel to the next, just skimming the surfaces, or it will swim so deep in each it costs a huge effort to reemerge, let alone jump. And when the fish can't jump without feeling unreasonable anger at being required to swim up from the deep, comfortable murk, the fish who is also a mommy fish deeply resents not only those who ask her to do so, but herself for showing the worst parts of herself to the best things in her life, and acutely feels the judgement of other adult fish, real or imagined. Yes, I'm aware the fish analogy is falling apart by now. (On a different but related note, there was a time my husband affectionately called me Goldfish because of my inability to remember what I was doing long enough to swim across my fishtank, or what I was saying long enough to finish my sentence. When I would unexpectedly word-associate mid-sentence and blindside him with a wild, unannounced change of subject, he would say, "thunk!", imitating the sound of a goldfish swimming at high speed into a fishbowl wall. He used to think it was infuriating, but cute. Now we mostly just think it is acutely infuriating.)

I have a 20 month old and an almost four year old. I need to be able to jump. I also need to remember to feed them before 4pm, pick Daniel up from preschool, whether or not I gave him his meds today, and that my children exist when I am deep into a project. 

So I did something I have not done in my entire adult life the other day. I saw a therapist. With one of those weird couches that doesn't know if it is a couch or a bed and everything. (Fortunately, there were also two hard, upright, uncomfortable chairs sitting directly, awkwardly facing her desk for people like me who think the couch is too much of a cliche, but who then spend an entire hour thinking how comfortable the couch looks but also wondering if a switch to the couch mid-visit will be psychoanalyzed so they stay the course with their chosen chair while their butt goes numb.) The decision to try therapy was precipitated by a week of me not being able to manage childcare, cooking and cleaning simultaneously in one day, and being beside myself in the evenings with mental exhaustion, self-recrimination over being such a horrible housekeeper and/or mother, completely overwhelmed by the time Bobby got home, being angry at him when he suggested I should have done a better job, had more patience, not yelled at my little darlings for being little darling jerks. I don't know why anger has been my go-to, other than the anger has been borne of sheer frustration with myself and my inability to adult lately. Well. And the fact that until we get kicked off government healthcare as we edge further from poverty level, mental healthcare, at least in the area mental health center, is covered. This might be the only time in my life I will be able to afford to find out if I'm an acceptable or unacceptable amount of nuts, so as long as it is available to me, I would probably do well to take advantage of it.

I almost suspect part of this weirdness lately has to do with having no crisis to manage, and that is disturbing to me. I wonder if I have become actually somewhat addicted to the subtle high that accompanies panic. I almost miss the simplicity of being allowed to drop all the peripheral stuff and just keep the main thing the main thing and being forgiven for letting everything else fall apart. I'm in a state of transition back to "normal" after four years during which we changed jobs five times, relocated to new towns twice, recently moved again to a new-again town where the friends I have left here are in a very different place than I am with older kids (although they try their hardest to still be the friends we used to be, which says something amazing about them), lived in four different houses, went from ten years together childless to having two kids, and had one of those kids diagnosed with an acute life threatening illness. I have been pregnant and/or breastfeeding during that entire time, which means I literally have no idea anymore how much of the crazy is me and how much is my hormones. Or maybe I've been hormone-crazy for so long all the non-crazy neural pathways have buckled asphalt, with weeds growing through them.

I naively hoped it would be as simple as procuring a bottle of whatever adults with ADHD are taking these days, and taking them as I used to- popping one only when I truly needed it to get through my day, only when the goldfish needed to be somewhere besides hidden inside her plastic castle, driven to mad distraction by the colorful rocks and waving plastic seaweed and hey! Bubbles! I only took them on school days as a kid, and bounced around at will the rest of the time. i thought I could do the same as an adult and thus experiment with contrasting me on meds to me off meds and see if off meds was so bad after all. But it never is that simple, is it? The therapist wanted to assess me at length. And talk. And schedule more talks. I know she is doing her job, but I have zero time or patience to talk. I sacrifice sleep to write here, late at night, in my private journal that is also my public blog (because who has the time to keep two separate journals when they can just decide they don't need to keep their secrets secret?) so I don't have to actually talk about this stuff. I'm awkward in person. For some reason, I'm fine with the entire internet knowing I'm not superwoman...as long as I don't have to see their reactions to this shocking news. But it turned out I scored higher than I thought I would on her assessment quizzes for trauma, depression and anxiety, areas I thought I was perfectly fine in, sooo hey ho, to therapy I go. 

Once she heard that depression and/or bipolar disorder, officially diagnosed or merely suspected, is practically a gulf stream through my gene pool, the therapist jumped all over that. She thinks a lot of kids who were at high risk for being bipolar were misdiagnosed with ADHD in the 80's and 90's because manic depression, as it was known then, was an adult's diagnosis while ADHD was a kid's diagnosis, countless kids of bipolar parents were diagnosed with ADHD and there is no link between the two, and bipolar disorder has a definite hereditary component. I am a lot resistant to the idea because not only is it stigmatizing to have such a diagnosis, I don't feel like I have those erratic swings between manic and depressed, and while the occasionally endearing and amusing and occasionally really destructive monster I have been calling ADHD my entire life does somewhat come and go, or more accurately, is more or less disruptive depending on the current circumstances, it is generally me managing the symptoms that determines when it does so. I also have issues with her snap assessment of a misdiagnosis because my parents, when I was ten, were skeptical enough of such a popular diagnosis at the time being pinned on their kid they drove me to Denver to hotshot big city child psychologists for second opinions, even had an EEG done to identify the brain wave abnormalities associated with an ADHD diagnosis to remove the skepticism they rightly felt. They did their due diligence to ensure I wasn't just a case of drugging something that should have been parented. They were ahead of their time in hesitating to jump on a bandwagon, and the fact is that the meds worked. Almost overnight, I started completing my schoolwork, started feeling like school wasn't this horrible, unfair, hostile place, stopped needing to give equal attention to the words and numbers in my workbooks and the scratchy pencil two rows behind me, the person whisper-reading beside me, the foot tappers, loud breathers, snifflers, crackly page turners, or the teacher assisting other kids. I don't feel it was a misdiagnosis, if anything, as an adult, perhaps there is some encroachment from the more hereditary aspect of my mental health that is muddying the waters, and I greatly resent that. And if my brain's version of Pandora's box was opened by the stress and trauma of the last several years and now other, specifically genetic stuff is rattling around in there, I very greatly resent that.

I just want happy, simple and uncomplicated. I don't want to be broken. Over the last two years, so many people have called me Supermom I have become afraid of letting them down, of letting them see me lose my crap- I mean cape- and becoming the person I thought of myself as before- not awesome, just barely holding everything together. My biggest fear at the moment is that I am going to gain a diagnosis I do not want, one that I have not been incorporating into my personal identity and embracing as uniquely, lovably, infuriatingly me since I was ten, and now nobody will want to sit by me at lunch. I know. 

My problem recently is that for the first time in my life, I am unable to use the tools I have always pulled out of my toolbox when I start to feel frustrated by being me. I used to go on a mountain bike ride when I started to feel the thoughts whizzing around leaving me dizzy and confused, and biking was an almost guaranteed silver bullet for the brain Flubber. (Yes, the Robin Williams movie. I truly identified with that zinging little green blob.) Sometimes it took twenty miles of hard mountain biking, my entire mind focusing on the trail, endorphins crowding out the chaos, but it always worked; although I left the house feeling angry, frustrated tears just behind my eyes, I came back feeling focused, serene, happy, and ready for life again. In the cold months, cross country skiing took the place of biking when the snow was finally too deep to allow my bike to do anything but sink. When we moved to Kansas and the wind blew too hard and hot and the landscape was too flat for biking to be fun, I ran and gardened and did yoga, and having a kid just meant I did that stuff with him in the stroller, on my back or on the floor next to me. That worked until the second kid came and was like his mother- bored by and resistant to carriers and strollers once he learned how to walk on his own. (And yoga- don't get me started. You might be able to do yoga with two kids sitting on your head, but not I, and also you women who do non- yoga living room workouts that involve sweating and jumping are clearly operating beyond a level attainable by actual human mothers who are easily distracted and good heavens, how do you even manage to not wonder off mid jump-squat because the stress of a living room workout without the fresh air, nice smells and changing scenery of going outside to exercise makes you remember that you need to stress eat like, now? ...Glad I got that off my chest.) But, since their dad was mostly non-employed during the last year, I was still able to get away when the brain-Flubber really needed to be let out, and go abandon it on Loveland's Devil's Backbone or some other lonely trail. So I have only been out of silver bullets since he started working full time again. Unfortunately for my mental health, full time for him has been pretty literal- his only guaranteed days off have been every fourth Friday, chemo day, and we spend all the daylight hours that day in Denver, at Children's Hospital, on the road, or running Denver errands.

So there's all that. Turns out, if you think you are going nuts enough to make you seek a second opinion, you may find out you are more nuts than you think. I'm in a good place there too, though, I think. I'm somewhere near the optimal zone on a nuts bell curve- nuts enough to ask for help, not so nuts I refuse to acknowledge I need it. But also massively annoyed that now I'm supposed to talk. With words. Not with writing. Writing is my friend. I get to edit to make myself as understood as possible before posting, to search through the verbiage vault until I find the perfect word with just the right implication to set the tone I'm going for. Going live is more stressful. All I wanted was to try drugs for a little experiment to judge if I actually needed them or just needed to pull on my big girl pants and deal with the crappiest bits of life on my own. 

In the meantime, when it calms down, my brain still acknowledges that life is so amazingly, beautifully normal. At night, I wake up and the first thing I see in the not-quite dark is the curling eyelashes and smooth cheeks of a sleeping little boy. Which one I wake to depends on which side I am lying, they sleep on either side of me. Little mouths are open and breathing deeply, soft, busy little hands are relaxed, and I just die a little inside from sheer adoration. I am so puzzled, in those moments, how they could have driven me so crazy during the day, how I could have ever yelled at them, how I can remember how exquisite they are when I want to yell at them tomorrow. I whisper to them how loved they are, how sorry I am, how beautiful my life is with them in it. When they wake up, I ask Daniel if he knows how much I love him, and he spreads his arms wide to show me, and so do I, and we throw them around each other in a mutual bear hug. Almost every night, Bobby and I lie on either side of Daniel, all love-drunk, and talk about how overdue he is to be forced to sleep in his own bed. He slept in his own bed for about four months, then suddenly decided that was for the birds. We talk about how short these years of blissfully, innocently sleeping cuddled, safe and warm,  between the people who love him the most in the whole world are compared to all the years of living and heartbreak and adulting he has ahead of him. If I miss sleeping next to Bobby, I reach out a leg and fish around until I connect with a hairy shin. (As far as the things mommies and daddies do when they love each other very much, I know you are probably wondering. You already know we're resourceful. That's all you get.) Daniel is starting to understand fear, and told me the other day he wasn't afraid of the dark, because when he started to feel afraid at night he just shut his eyes and went to sleep between mommy and daddy. My heart turned to goo. All the fear and hurt and strangers doing painful things to him without his permission for almost half his life already, of all those terrifying roads I have had to watch him walk in his tiny toddler shoes and couldn't carry him, couldn't take them from him, couldn't walk for him, here is one thing I can do. Here is one thing I can spare him. Maybe that's our trade-off. Many other kids are spared the things he has had to learn not to fear: needles, burning doses of chemo shot into his muscle tissue, 22 (to date) spinal taps, broken bones leading to atrophied legs while steroids swelled his body, raging emotions and uncontrolled nausea and splitting chemo headaches so severe he screamed and vomited when they hit him, but there is one thing, one normal childhood hardship I can take from him. There are no monsters under his bed, no shadows creeping from his closet. 

I have been miserably sick the last two days, feverish, achy, chills and shaking, a throat so sore it hurt to talk, but am feeling much better today. My parents should be arriving soon, which means I get to do me-things for the weekend, a prospect that has me pretty excited. So far the boys have only had boogers, and Bobby has only had a mildly sore throat. I'm not sure why I'm the only one getting sick lately. I, and only I, spent a night vomiting two weeks ago. Only I have had to try to be functional through achy fever chills for two days. Thank goodness it is only I, but what the? How is Daniel staying so healthy? His ANC was 600 two weeks ago. That is pretty low. He should be the one getting so sick so often, not me. To me, this can only mean one (or maybe both) of two things- he is the most resilient little human ever, or I am an extremely worn down one. 

December 16 marked the beginning of Daniel's fifth round of maintenance chemotherapy. Each of the first four rounds consisted of three identical months, two of the months beginning with Methotrexate via a spinal tap, Vincristine via his port, and a week of steroids, then daily Mercaptopurine and weekly Methotrexate, plus four doses of an antibiotic on the weekends. The third month was identical except for the exclusion of the spinal tap. We now start a schedule with each three month round having only one month including a spinal tap, the remaining two having just Vincristine, steroids, plus the oral chemos and antibiotics. This means we now have only have one day every three months that is complicated by a procedure under anesthesia, the other two visits are in and out, just a quick chemo push into his port, and out the door. And our nurse told us that she had been mistaken- although discouraged, siblings under 16 are allowed in the clinic during flu season precautions. Which means the last two visits have been unnecessarily stressful, one of us keeping Alex down in the atrium and cafeteria while the other goes upstairs with Daniel. Not knowing this until after December's visit, for the first time in 22 spinal taps, I was not there when Daniel drifted off under sedation, to kiss him goodnap. The risk of an anesthesia complication are minimal, especially after so many uneventful sedations, but it is still there, and while Bobby was upstairs holding him as he went under, I was downstairs struggling to keep calm, fighting off the Dreads. 

Somehow, I've gotten it in my head that if my life were completely under control, I would be a better person. I would play patiently with my little boys because no sink full of dishes screamed at me. I would paint or write because why not? I spend so much of my time just dealing with this overfilled house, piles of snow clothes and tools and food and laundry and randomness pulled down from shelves and not returned. If only I were surrounded by order, then I could be functional and well adjusted. I recognize this. It is me grasping for control because I feel like I'm careening around rudderless. I'm also channeling it. Once I got the requisite living room furniture rearranging (that B loves coming home to so much- just ask him!) out of the way, I pointed the obsession toward the cabinets and closets. I finally found shirts that are stretchy enough to hold their shape when the neck is stretched out to nurse, so I bought six, and threw away all my awful, lumpy, stained shirts. I feel like a real girl. Wardrobe is under control. Check. Laundry room cabinets got organized and purged today. Check. I am surely about 1/10th more in control of my life now. 

But I also drove home to the wrong house this morning after running an errand. I was almost to the driveway of the house we moved out of over five years ago when I realized something seemed a little weird. So I turned around and drove home to our current house, poured some cider into my stovetop coffeepot to warm it a bit, forgot it, burned it on the bottom, and probably ruined my nice glass pot. So I gave up, let Leap Frog raise my kids, and cleaned all day, hoping to find my sanity under a pile of laundry.

...and I've been not-finishing this post for a week now. It's been sitting here unpublished for so long I'm sick again. A miserable head cold this time. We are hiding from life, not seeing anyone, hoping this one runs its course as the others have- with me taking the brunt of it and nursing little boys, and becoming an even bigger believer in the powers of breastmilk to deplete its provider and nourish its recipient. I just climbed out of the shower, where I retreated to try to get some warmth into my bones. I actually took a steaming cup of apple cider into the shower with me and sipped it as I let the water scald me. The steam opened up my sinuses a little bit, the cider warmed me from the inside out while the shower warmed from the outside in. I'm enjoying he finally quiet house, but almost ready to be off to bed. Bed is already made toasty for me by four warm bodies (that includes the dog) and I will probably not sleep much, between the oral chemo alarm that will go off in an hour and a half, which will wake us all but only Alex will be allowed to nurse himself back to sleep while Daniel cries. About 4am they will both wake up and nurse intermittently until 7 am. I no longer sleep, I doze. I don't mind the night nursing terribly much, I tell them they can have all they want at night (aside from Daniel's 5 hour mercaptopurine fast), and during the day, I try my hardest to redirect them.  Since my last post, in which I was about to lose my mind over it, I've made that change. Other moms night wean, but I think it works better family if we just work toward day weaning. Night weaning would mean getting them out of our bed. That's going to be a whole thing. 

Good night, and love to you. I may not be your most stable friend, but I know you'll love us anyway. 

One Job

Hello again! Did you miss us? No news is good news on the cancer front. Things are a little rough right now, but nothing like last year rough, just some viral stuff we are all fighting and all winning except for Daniel, who cannot take immune boosting supplements because if they work, they could interfere with his immune suppressing chemotherapies. But due to his recent steroid pulse pushing his neutrophils high, then a brewing virus pushing them higher, his ANC was sky high last Friday night, when a fever over 101 degrees forced us to make a bleary 3:30 am trip over Swan Mountain to the St Anthony's emergency room for blood work and cultures. Like 9,000 high. High for even a normal person. His lymphocytes were really low, which is to be expected with his treatments, since they are the white blood cells prone to errors in replication, thus the white blood cells they most want to suppress. The fact that he really needs them and doesn't have them to fight off the junk he's fighting doesn't matter much when the alternative is relapse risk. 

My parents were up here for Thanksgiving. It was about time- both boys were asking on a daily basis if they could go see "goppa and gomma". (Now that they are talking so much, it is amusing to me to hear their perceptions of their relatives. We pretend to go see grandpa and grandma, we pretend to call Aunt Marci, and we pretend to open presents or non-pretend dig through our wardrobes to find shirts and pants from Aunt Mary.) My dad had a little episode before coming up here with what they assumed was a touch of listeria, since it happened shortly after he ate some lunch meat that, it turned out, had sat on the counter overnight. He recovered in time to come up here to see us, but while here, my mom came down with the same thing, obviously viral instead of bacterial. So we know we have had exposure to a stomach bug with a seven day incubation period. With any luck, we'll kick this head cold just in time to start with the vomiting. That should be fun. 

On the way into the ER early Saturday morning, I realized that in the chaos the night before, getting two little boys to go to bed in spite of grandparents being here for a slumber party, and being on fever watch, I had completely spaced giving Daniel his weekly oral chemo at bedtime. I made a mental note to give it first thing in the morning. 

But did I? 

I have counted the pills we should have taken since our refill on November 5, but that didn't help because I think I remember dumping the rest of the old bottle into the new bottle last month to make room in the medicine cabinet, rendering the number of pills left in the bottle (2, a full dose is 6.5) useless to me. I remember dissolving one dose in water in a syringe because he refused the swallow them, which was unusual, since he usually takes them in the form of a "pill truck",

(It's a flatbed semi! But it is having tire trouble. Do you have a tire shop in your tummy? Can it drive down there to get its tire fixed? ...here, let me listen to your tummy...yep! I hear it jake braking all the way down! I think it made it to the tire shop! How awesome is it that you could help the pill truck get into your tummy to get fixed?!")

...but I think that might have been last week. I counted the pills before we went to the clinic on November 18 and remember thinking he would run out after his dose on November 25, but I think maybe I counted them thinking I would not be giving him a dose that night, because on clinic days when he gets a spinal tap we skip the weekly oral chemo because he has had the same stuff already injected into his spinal fluid earlier in the day. I remember at bedtime on November 18 suddenly realizing I did have to give it to him because that day at clinic had been IV only, no spinal. But I think when I counted them as two weeks worth before we left for the clinic that morning, I was not remembering I had to give a dose that night. Or was I?  I have given so many pills to him in so many forms they have all blurred together. The kid should have swallowed 43 pills last week. But did I only give him 36.5? I'm losing my mind. I had one job. One. Keep the relapse risk at absolute minimum by giving him his meds, all his meds, at home and on time. 

But did I? 

The oncology clinic returned my call, which was laden with embarrassment and groaning under heavy self-recrimination even on the message left on their answering machine, to tell me that even though I was eighty percent sure I forgot to give it to him, the 20% chance he would receive an overdose was a bigger concern. 

One job. I had one job.

Well. I mean, besides momming a toddler and a preschooler, feeding and clothing and dealing with their hysterics because they don't feel well and trying to keep them from sharing drinking glasses or silverware, and mitigating potential injury caused by thrown toys, sibling jealousy or parental neglect (they have discovered chairs can be moved to access countertops, there is nowhere left to hide the knives) and occasionally working part time, dragging them with me into condos to clean or inspect, obsessively washing their hands and bathing them and cleaning house and bleaching surfaces and taking their hands out of their mouths approximately 7,000 times per day and helping one build Lego airplanes while keeping the other from destroying and/or eating Lego airplanes. 

Okay, so like... One really important job, closely followed by other really important jobs. 

I have heard people say everything with kids is twice as hard as without them. I think that is BS. If everything were twice as hard, we wouldn't have a problem. I think it is more like an order of magnitude harder. Think I'm being hyperbolic? Here, let me tell you about my day so far. (Those of you with more than two kids, you should probably stop reading now. You clearly are not on the same plane as we mere mortals and your ironic chortling over my lack of ability to not lose my crap with my two kids while you feed organic homemade meals to your 3-6 kids and get them to bed on time with while smoothly juggling full time jobs clearly means that you have come into contact with gamma radiation at some point and have powers I do not possess. Just remember, as you are exiting, with great power comes great responsibility to not intentionally make the rest of us realize how terribly we are failing. On some level, we already know.

This morning. We awake with two kids in our bed, because Alex never has slept alone a night in this 19 month life so far, allowing us to not even add a crib or toddler bed to our budget, let alone find the space for it, and Daniel, even on the nights he starts out in his own bed, finds his way between us at some point. They both wake up wanting, nay, needing, nay, desperate for "da boobies". Now, let me say here, I am so. over. nursing. I really am. But are they? (Excuse me while I laugh maniacally) ...No. No, they are not ready to be done. And I can't wean them. I might be sorely tempted to if Daniel hadn't sailed through 10 months of maintenance chemo with exactly one fever. We don't do things much differently than the parents who are in the ER every few weeks, except for that. More times per day than I willingly admit, Daniel fishes around in my shirt, crying, and I sit down with him and we nurse, and he gets a fresh dose of a personalized antiviral, antibacterial, pro- and prebiotic substance. And what happens then? Thing 2 happens. He sees da boobies, and here he comes, his face all lit up with expectant delight. 

Funny thing about tandem nursing. It isn't this way for everybody, but it definitely is for yours truly. One kid, it's fine. I'm fine. I can basically ignore the squeezing, playing, kicking, tugging, gnawing, stretching, rotating, yanking, everything that goes on when a non-infant is nursing. But the second it starts happening on both sides, I lose it. My skin crawls. I feel dirty and violated. Most moms who have nursing aversions don't last long at this nursing game. I'm incredibly lucky I only feel this way when nursing two, because some feel it with only one latched on. It just feels gross. Like spiders across your hand gross. Like slime oozing down your back gross. Like hugging a really sweaty person gross. Chewing on tin foil gross. I digress. It's happening right now. Im trying to write through it and focus but all I'm really doing is failing to ignore how I feel right now. I love my kids, but when they nurse through my aversions, I picture doing violence. 

So then we get up, after they have had their first course of liquid breakfast in bed. They are happy, their blood sugar is up, I'm feeling like a new person because my body is blissfuly my own again. Breakfast is turned down by Daniel, who prefers Legos, even though I lower my standards and tell him he can do both simultaneously. Alex munches on a cracker I left lying on the counter overnight, and with him so distracted, I make an omelet, which B takes half of, eats as if in a race, grabs his coffee, and is out the door. I spend the next hour trying to convince the two small ones to eat, and then to let me dress them to go outside. Bobby has too much to do today to also shovel the decks and walkways of our seven large houses, so he's asked me to do it. I can't get the boys interested in going outside to play, or helping me snow shovel, or sled, so I pull out the big guns and promise them a gondola ride, put your snow clothes on and get in the car, we just have to make a few stops first. Just slaying this parenting thing today. They immediately stop the Lego redistribution project they have expanded into three rooms now and plop down with their legs in the air so I can slide their snowsuits on.

(At this point, let's contrast where I'd be by now if it were only myself I were dealing with. I'd have gotten up, made breakfast, put on my snow clothes, driven to my first property, shoveled it, worked up a healthy sweat, and be on my way to the next one.) 

Alex has by now ignored his omelet but has eaten several handfuls of shredded cheese, so he's fed. Daniel refuses to eat anything, but he did have breastmilk, so it's better than nothing. I get Alex bundled into layers. He looks like a marshmallow wearing boots. I know this won't allow me to buckle him safely and tightly into his carseat, but we're only going a two miles and I can't unbundle and bundle them back up fourteen times in the next few hours. I'm sure any officer questioning my decision would understand. The Summit County police force and frequent state troopers are known for their lenience and understanding on motor vehicle safety compromises. 

By the time I get Daniel dressed in snowpants, coat, gloves, hat, double socks, and boots, Alex has removed his hat, boots, double socks, and gloves, and is working on his coat. I tell Daniel to sit, and I dress Alex again. Then I turn around to tell Daniel we are ready to go, only to discover Daniel has his gloves off, and is freaking out because the band aid that was on his thumb is now lost inside his glove. A bandaid that once covered a very minor pinch from a toy that barely drew blood exactly eleven days ago. There is a slight change in pigmentation on his thumb where the owie once was. But that bandaid is apparently the difference between him being able to function and turning into a crying heap on the floor because his injury is naked and exposed. I go to get him another bandaid after only about thirty seconds of arguing that he does not need one. I put it on his thumb (intentionally covering his former injury site with the tape part because it proves two points- one, that he doesn't need it and two, that I really am that petty). I put his gloves back onto his hand with two bandaged fingers (he pinched his pinky putting a lid on a marker, therefore bandaid) and go to find my own boots, only to come back to Daniel holding up another finger, outside his gloves, with another invisible owie, begging for a bandaid. 

So I do the only logical thing. I snap. In a lovely display of parental restraint, I stomp to the bathroom, grab a handful of bandaids, stomp back, plop down next to him, grab his hand, and, ripped wrappers and wax papers falling around us like snowflakes, put a band aid on every single fingertip. There. Let's see you ask for another bandaid now. He sits there looking at his five bandaids with a baffled expression, then starts to whine. "Nooooo! Not all bandaids! Don't need them!" I shove his hands back into his gloves, his feet back into his boots, jam his hat back on his head, and shove him out the door toward the car that has been running for fifteen minutes already, because I needed to give it about five minutes to warm up. Then I turn around, and Alex has removed his hat, gloves, shoes and double socks. 

So I do another highly logical thing. I push him out the door too. Not sure if this is child abuse or just showing him why we need to keep our shoes on when we are walking out the door, and I expect him to stop immediately and ask for shoes, but the snow outside literally does not phase him. He trots barefoot across the snowy porch, down the snowy steps, over the snowy driveway. I follow incredulously and lift him into his carseat. Only then does he seem concerned- his feet have snow stuck to them. "Feet wet? Feet wet!" Feeling remorse, I squeeze his cold little feet in my warm hands, then attempt to put his socks back on. "NOOOOOOO!" Okay, then. Apparently frostbite is fine. As long as it's a dry frostbite. 

In the meantime, Daniel has not crawled into his carseat as requested multiple times, but is sitting in the middle of the driveway eating snow we and the dog have been walking in, gloves off and soaking his five bandaids. I yank his hands out of his mouth for about the fiftieth time so far today, then swing him into his carseat. As I am buckling him in, he starts complaining that something is wrong with his socks. I think its actually the toenails, they are horribly separated right now thanks to chemo, detaching from the root side. Its really horrifying to look at, but he claims they don't hurt unless pulled on. I assume his socks are catching on the jagged, split out edges. His boots are already off. I adjust his socks, put his boots back on. They still feel funny. I tell him to try to fix them himself while I drive. He doesn't protest immediately, too distracted by his funky- feeling socks.

The dog, meanwhile, has spun himself into a frenzy, not knowing whether he will be invited to come along, freaking out he won't be, attempting to force his way between my legs and into the car. I finally put his mind at ease by stepping aside and speaking to him that most euphoric of phrases: "get in." He practically levitates, scrambles past and over Daniel and into the back, snow flying everywhere in the car, then sits, grinning a huge, gaping, tongueful grin of pride in his good boy achievement.

The house is already locked, but I forgot my phone inside. I let myself back in, then go to the storage shed for their two little shovels. I can only find one. I get tired of looking, take one and a sled, hoping they wont both think they need a shovel, and drive to the first house, already an hour behind schedule. 

No sooner are we driving, then Daniel starts whining about his five bandaids again. Feeling more calm and embarrassed about my earlier display, I tell him to remove the ones he doesnt want. He must do it, because the whining stops and excited chattering about how we were going to ride the "donyoya" starts.

Once we get to the first house, I survey the back of the car, littered with four gloves, four pairs of socks, two hats, and four boots flung into far reaches of the car's interior. I decide they might like to play inside the car instead of outside it, so I unbuckle them from their carseats, pull the keys, and finally, finally start to shovel my first large deck of the day. 

Exactly five minutes later, wailing is audible from inside the car. They are beside themselves. How could their mother abandon them like this? I lean my shovel against the house and go to the car, put on all the socks, shoes, hats, and gloves again, and bring them up to the deck with me. Oh, you want your shovel? Um....ok? Oh, great, now you both want it. Did you see the sled? No? Sleds are stupid? Gloves are stupid? Now your hands are cold? Now all your gloves are off as you play tug of war with the one shovel? Now you're both crying? Here, here's another mommy-sized shovel. Look! It's just like mine! It's so big, it's like a bulldozer! What's that? You're not an idiot, you know I'm just trying to get you to shut up so I can work? Yeah, I know the idiot is, in fact, me, for thinking I could do this. 

Twenty minutes of hysterical crying, snot and tears and wet snow all mixed together on little red faces, I have exactly one deck half cleared, and I finally call Bobby to see if he knows where the other stinking shovel is. No, he does not. He does, however, pick up on the crazy in my voice, and gathers another clue in the crescendo of bawling in the background, and tells me to forget it. Just take care of your kids. We'll get the shoveling done eventually. 

I load them in the car, Alex so hysterical he is almost gagging. I consider nursing him for a few seconds, like I sometimes do to instantly calm him after being put in his carseat, standing on the running board leaned into the car in front of him, but it is blowing swirling snownados around us, I'm warm inside my coat, and my boobs are buried under three layers. "Just let my get out my nipples for you right here in the freezing wind with little shards of ice flying around", said no mother ever. 

By the time we get home, he is slightly more calm. I run into the house to get him a hat I hope he wont hate as much as he has decided in the last hour to hate the one with the tails that hang down where he can see them and be reminded of the existence of the hat to which they are attached. I briefly consider driving down to town to pick up the little pair of skis we bought for Daniel the other day, that are still at the ski shop I used to work at, waiting to be DIN tested and adjusted to his boots. No, too complicated, plus with the mood he's in, not an ideal day to introduce him to skiing. Keep it simple, stupid. 

We pick up someone walking on the road and give them a ride to the bus stop. I do this quite a bit. The Summit Stage removed the closest bus stop, so it's about a mile walk from the trailer park to the bus stop. Yes, Summit county, in all their free public transportation wisdom, removed the bus stop from one of the few "affordable" housing developments in the area, forcing the humans who live here without cars to walk, hunched into the winter wind, carrying grocery bags or sports gear or backpacks with their nice waitressing shoes inside a whole mile, then a mile back home. Andy goes a little nuts over the intruder, but calms down once determining she is harmless. She is okay with it. She's a dog person, on her way to volunteer at the animal shelter. 

We drop her off at the bus stop, then head for Keystone and the dondoya. And now Daniel has decided he wants to eat. An apple. He wants an apple. I have bananas at home, I have oranges, I even have a few ounces of apple juice, but no apples. And the kid wants something fresh now? What gives? Maybe I can run into the Keystone Grocery and pay four dollars for a Granny Smith...I feel under my seat. No purse. Didn't think it would be there, but sometimes I forget to carry it in. No money. I tell him we will try to find some free granola bars and apple cider when we get to the gondola. He isn't impressed, but we are going to the gondola, so he guesses he can hang. 

By the time I find a parking spot in Keystone, Alex is asleep. Barefoot. Again. No gloves. No hat. Daniel is in the same state of undress, except awake and excited. I leave them in the car and retrieve a curtesy wagon, rehat, resock, reboot, reglove them, put them in the wagon, and trudge to the base area. We have to go inside the season pass office to get their passes for the season. They are free until they are five years old, but they still need a pass. It was hard to wait when the gondola was so close, but they survived. 

And finally, we are able to go get scanned in and navigate the lines and get on the gondola and take off. Totally worth it. We see snow guns and snow cats and kids riding on the ski school magic carpet and other people in other gondola cars. At the top, we watch the skiers and talk about how much fun it looks like to ski. We go into the Summit House and climb stairs until we get to where they have blocked the top levels off. And then it starts. 

Daniel: "I need cheese! Where my cheese? I need my cheese!"

Me: "You want cheese?" 

"Nooo! My cheese! We go home get my cheese!" 

"Are you hungry?" 

"No, no, no! My cheese! For my feet! Like the people outside!" 

"Ooohhh, your skis?"

"Yeah, my cheese! Let's go get them!" 

So much for keep it simple. 

I tell him we can go get them, since I do have other errands to run down in town, but they are at the ski store and we will have to stop by home for my purse first. And first, we get to ride the gondola back down. I say this hoping they will go to sleep on the drive and I can take them home and put them to bed, then possibly do some damage to the opened bottle of pinot doing nobody any good in my fridge. Because why take cold medicine when drinking achieves the same goal, right? Except for the congestion. But what would you rather be, a little buzzed and congested, or have a clear nose and no excuse to put off housework any longer? 

I put Alex on my back in the carrier, and carry Daniel in my arms, to the amusement of various skiers and snowboarders on top of Keystone. Neither of them wants to walk. About halfway between the Summit House and the Gondola, Alex kicks off his boots. I carry them, too. We get ourselves into a gondola car, I turn to take Alex out of the carrier, turn back around, and Daniel's boots and socks are lying on the floor. No, he will not be putting them back on. Not a chance. No. The boots and socks are off. Permanently. End of story. 

I try all my tricks. 

"Honey, why dont you want to wear them?" 

"I not want to."

"But why?"

"I not like to wear them." 

"Do they hurt?"

"No."

"Will you wear them another day?"

"Nope."

"Do you feel sad or mad inside?"

"Nope, I just not want to wear my boots."

I encourage him to stand on the icy, slushy metal gondola floor in his bare feet. He tries it and immediately gives me a story much closer to what I expected out of Alex earlier- dancing from foot to foot, crying "it hurts, mommy. Owie! It hurts!" 

At this point, I again slip back into logic, which in this case, consists of arguing with a three year old. "Of course it hurts! It's freezing cold! We do not take our shoes off in the gondola! This is a freaking ski hill! It is winter! You are wearing full ski gear, on a ski lift, and you are barefoot! I will not carry you, you can wear your shoes. Put them on." 

"Nope."

"Put. Them. On."

"No."

"Here. I'll put them on for you." 

"Nooooooo!" 

I do think his chemo causes sensitivity to hot and cold, which manifests as actual pain. I've heard older kids going through the same treatment say this. It makes sense. Nerve damage is a real concern with Vincristine. What makes no sense is that he refuses to wear his shoes. Did I mention, in a snowstorm? On a ski hill? He's choosing the pain of being barefoot over wearing his shoes, pain that for him is probably magnified? And not because his shoes hurt, but because he just decided not to wear them.

And the doors are opening at the bottom, so I grab Alex, whose boots I have finally gotten back on, and Daniel's boots, lead Alex out of the gondola, turn around expecting to see Daniel behind me, only to see him sitting resolutely on the gondola seat as it moves past the boarding platform and prepares to go back up the mountain. I drop Alex's hand and sprint back into the car, grabbing Daniel and pulling him out after me, in his bare feet. Then run back to Alex before he decides to dive under the moving gondola cabins, pull him over to Daniel, then ask Daniel again to put his boots on, to a loud "NO!" 

At this point, we are definitely the scene of the hour. I look at the lifties and shrug my shoulders, palms up, head tilted and eyebrow raised with an ironic smile, like, "Kids. Whatcha gonna do, amiright?" Not one twitch in return. Like until that point I thought maybe they were thinking, "This kid is experiencing a natural consequence of being a little jerk, because this is the way your world works when your parents care about you." But I'm now pretty sure lifties have about the same sense of humor as the Colorado State Highway Patrol. I even thow in an admittedly condescending, "Daniel, honey, we keep our shoes on in the gondola because gondola rides don't last forever and eventually we have to get out and walk in the snow." Not a flicker from our scowling lifties.

So, all the way out of the maze of ropes that only directed a few lines of skiers, we limp. 

"Owie!" 

"Put your shoes on." 

"NOOOOO!.....Owie!"

"Put your shoes on." 

"NOOOOOO!" 

Once outside the line, I kneel down, pick up Daniel's feet, and put them inside his boots. He cries, but it is more mournful than angry. We find a wagon and I pull them back to the car. We drive home, stopping long enough to give a ride to someone walking home from the bus stop, and by the time we get there the crying has stopped and they are asleep. I get them carried inside and they sleep for twenty minutes, then Daniel is awake, hitting Alex, yelling, "Alex, wake up!" Alex does. I consider crying, both for naptime that isn't to be and the pinot that also isn't to be. But I lie down between them with my shirt pulled up and attempt to stifle my aversions and redirect my attention to writing instead. It doesn't really work. Alex wakes up more, demands lunch. It is noon, I cant blame him for being hungry. I ask Daniel if he wants lunch. He says no. He isn't hungry. He wants da boobies long, he says, as opposed to da boobies a little bit. He has learned that sometimes I will cut him off by counting to ten if he doesn't specify and get me to agree to boobies until he is done. I tell him he can have boobies long, but first Alex needs some lunch. By the time Alex is fed, Daniel is sleeping again. 

I let Alex watch TV, a toddler singalong show, while I write and ponder my failings of the morning, and wonder what I didn't see, what little thing I missed that made them seem like such little jerks. Maybe they were just trying to express something I wasn't getting. Likely they were as frustrated with me as I was with them. Daniel was likely hungry but didn't realize it. Would that I could have had that apple available when he wanted it. He probably chose to walk barefoot in the slushy snow due to low blood sugar, due to the lack of an apple, the one and only thing that sounded edible to him, and he couldn't identify, let alone express this confusing concept. 

Now Daniel is up too, has finally consented to eat something (that something was ice cream, I am not proud of that, but it was ice cream or nothing and I am hoping ice cream will be the gateway food that will make him willing to eat better things), and I finished this post while Alex was in the tub, because his own lunch was messy and required more than just a wipe-down. He's now running around the house naked, perfectly willing to fight for his right to never wear clothes or a diaper again. The last thing he did before climbing out of the tub was try to rinse himself off with a Big Gulp cup. Except he tipped it the wrong way, poured it outside the tub and all over my lap. I'm now soaked in bathwater from the waist down. Kids. Amiright? The day is young. What could we do with the rest of it? 

Oh. We've moved from ice cream to a banana smoothie. Which has now been spilled over several hundred Legos. 

Help, hype or hope? Holy Healthcare, Batman!

Hello! It's been quite a week, huh? I thought I was going to polish off some comfort food and wine election night, but instead I spent it in the emergency room, watching Alex struggling to breathe through a croup episode and trying to keep him calm in spite of getting less air than he needed. Then I brought him home in the wee hours, temporarily fixed up with steroids and racemic epinephrine, to sit and process what had happened with the election. Not just the results, because no matter which way it could have gone, only time will tell if we will be better off, but the way human decency left the building this year. 

I am choosing to live and love and try to learn in spite of not understanding what happened this year to the whole process, from messed up primaries giving us two completely polarizing and unelectable candidates, to trying to understand how personal integrity and family values, such a popular subject other elections, became somewhat irrelevant this year, and moving on... to how it affects us, as in yet more healthcare reform. 

The president-elect promises to repeal the ACA, which definitely had its issues to iron out, but was the only way we could be sure our little cancer fighter with a now pre-existing condition would be insured and not have a yearly or lifetime limit on healthcare expenditures. I'm not saying we and other families of tiny heroes are screwed, but I'm not saying we're not, either...that is impossible to know right now and only time will tell. But. If this turns out badly for those with pre-existing conditions and those who, like us, have a three year old who has already had $1.5 million worth of treatment and a 90% chance of some sort of future, chronic health issue, from nerve damage to learning disability to relapse or secondary cancer, we foresee only two options: keep our income low enough to qualify for Medicaid (there go all those grandiose promises of prosperity), or, in the worst case scenario, ask our friends who voted for the candidate who promised to repeal it to help us pay for Daniel's treatment out of pocket. (You all won't mind, right?) 

For some of his supporters, it might have been as simple as plugging their nose to swallow his distasteful words and actions, and voting for the candidate who promised lower insurance premiums on a plan they don't use because they and theirs are healthy. For Daniel, that might mean having to compromise his ideals to remain eligible for government assistance, fight with insurance companies and play the system his entire life, and have every decision he makes be influenced by whether or not he can remain insured. I don't know. It all depends on what replaces it. We were hitting boiling point with the ACA, as well, needing to save the parts that worked and rework the parts that didn't. But, regardless of party affiliation, it was a good window of time in our healthcare history to be diagnosed with cancer- we didn't have to worry about that diagnosis limiting his healthcare options. 

Here is a brief picture of what we have done so far: Daniel was diagnosed in Colorado on an 18 month extension of Kansas Blue Cross Blue Shield. That covered $1.2 million of his most expensive chemotherapies to date. It did not cover prescriptions and out of network ambulance rides, so we paid, in addition to $600/month premiums (on an outdated plan grandfathered in, hence the lack of prescriptions as recently as last year), $16,000 out of pocket. It covered all facility-administered meds, but around the time Daniel needed to start taking expensive, out-of-pocket oral chemo, we realized how fortunate we were to have moved to Colorado during a tech, tourism, cannabis and oil boom, with a healthy state budget and an expanded Medicaid program, and finally got him on secondary state insurance based on need rather than income- the Home and Community Based Services Waiver, which covered whatever Blue Cross didn't. Then the oilfield left town, and with it Bobby's job, at the same time our Blue Cross extension ran out. Which left us with no income, living entirely on savings and qualifying the whole family for Medicaid, no other options for subsidies, or, if we didn't want Medicaid, paying for an unsubsidized plan, which would cost us $1,200/month. Obviously, we chose Medicaid. Now, do you know what you can't do with Medicaid and a medically fragile, severely immune compromised kid who has to go to the ER for every fever or nosebleed? Leave the state. You won't be covered. At all. We cancelled all our family reunions except the ones close enough to the state line we could run him to the closest Colorado emergency room if needed. The only place outside of Colorado we have been while on Medicaid is a half-hour into Kansas. 

Now, just as our income is creeping back up enough to kick us off Medicaid, we see the election of a candidate who has promised to repeal subsidized insurance that guarantees coverage to cancer survivors and does not allow limits on how much one patient can use it. Even with the ACA, doing the math, we needed to make $20,000/year more to pay premiums and deductibles to maintain the same income we have with Medicaid, once we get kicked off. Now, there is no way to know what our future holds. While trying to research what might happen, I have heard from people on online cancer boards who, before the ACA, had to get divorced or adopt their sick kids to elderly relatives in order for them to qualify for government healthcare that would cover pre-existing conditions. I've judged people who admit to playing the system and keeping their income low enough to qualify for government assistance, but we find ourselves in the same dilemma- stay within 135% of poverty level, or find a way to make an extra $20,000 /year just to break even. And it might not even be about the money- even if we made an extra $50,000, that does not guarantee, without the ACA, that a plan with no spending limits and no pre-existing conditions clause will be available to us, aside from income-based government healthcare. 

So, can we all, no matter who we voted for, hope and campaign really hard that families dealing with diseases like cancer, Spinal Muscular Atrophy, Muscular Dystrophy, HIV/AIDS, Multiple Sclerosis, all autoimmune disorders, and rare diseases can not become as marginalized as the people groups already made to feel "less than" this election? Yes, insuring very sick people makes everyone's costs go up, but to their families, these precious fighters are the whole world. I wasn't always a cancer parent either. Tomorrow, you may wake up as we did on April 22 of last year, notice your own child looks a little pale, and become one of us. 

I love you. You have been absolutely wonderful, and you know that $16,000 we paid? Almost two thirds of that came from you. It arrived in envelopes, sometimes without return addresses, it showed up on our gofundme, sometimes anonymously. It nearly rips my heart from my chest to think of how much love we have been the recipients of. I am confused about how someone who used hate speech in his campaign even got through the primaries, let alone elected, but the fact remains that some of the same people who campaigned for him sent us their own money when we needed it the most, so I know love for fellow man is in your hearts, and I return that love. 

The world keeps turning and we keep on hoping for healing on a national and world level, for our hearts as well as our bodies. If everyone who voted donated one dollar to childhood cancer research, we could double the research budget for a year. That's a campaign I can get behind.

Alex is still having a hard time breathing, but between keeping the house humid and taking him outside in the wee hours to breathe cold night air, and holding him to keep him calm, we have avoided another ER trip. It's been scary a few times hearing him gasp and honk when breathing, but the worst episodes have been short ones. I don't know if this is the difference between Loveland and Summit County or the difference between Blue Cross and Medicaid, but the the same low oxygen saturation and biphasic stridor that didn't completely resolve in the ER that got him admitted last winter got him discharged from the ER in record time the other night. 

Daniel had a chemo break for low counts at the beginning of the month, so we have been on house arrest a lot lately. So far, he hadn't gotten whatever Alex has, so our fingers are crossed. Daniel has, however, been extremely oppositional, confrontational, and mournful lately. Which usually means either he doesn't feel great or he is three years old. He's also in detox week, very rashy at the moment. We go in for chemo (IV only, no spinal) in seven days. 

Fits and starts

Hello and welcome back. It is definitely my bedtime, but I've just eased myself back out of bed, out from under two tiny, finally sleeping bodies. I should still be there, but these last two weeks have been nonstop mothering. I need some me time. 

We haven't really found our groove in Summit County yet. I had a little more time to write in Loveland because we had a back yard. They played, I sat inside the patio door at the table and watched them play while I wrote. Here, I must constantly hover because our front door opens onto the street and no matter how sincere a three year 

old's promises to stay on the porch might be...ain't happening. But I do try to get them out once a day, load them in the bike trailer, and go to a park, explore a bit of lakeshore, or do a small hike. The only hikes we have done have involved Daddy for his carrying arms, since mama isn't strong enough to carry two big boys for any amount of time. I have a Boba carrier for one of them on my back, but the other must often be carried as well. Most recently, I bike them to school, over the ridge that lies between our house and the school, then carry Little in the trailer to go pick up Big again three hours later. It isn't much, but my legs feel stronger already, I've lost some weight, and am feeling stronger and healthier than in a long time. It is frustrating to live in such a beautiful, activity friendly place and not be able to use it at will, since B often does not get home and relieve me of childcare duties until after dark to allow me and the dog the chance to go on a solitary poop and sanity walk, but we knew it would be different this time around. We have kids now. Everything is different.

It is the night before this month's chemo. We have to be in Denver at 8 am, which means we need to leave here at 6 am. Little Dr. Daniel is asleep in his dark blue scrubs to save us having to wake him enough to dress him in the morning, Curious George is sitting on the counter all ready to accompany us to the hospital to be Daniel's patient tomorrow. 

I have the dreads. I don't always have them the night before chemo, but tonight I do. Daniel has been irritable and occasionally inconsolable this week, often uncharacteristically weepy. His head has been sweating while I hold and nurse him to sleep. The only time that happens is when he is on steroids, normally. And pre-diagnosis, when his bone marrow was over 90% cancerous cells and his blood was thin and useless. His face often feels cool but sticky, sweaty. Today, his breath smelled strongly like acetone, telling me he is ketonic, like perhaps his liver enzymes are out of whack. I stuffed any food he would eat in him all day, just in case he was ketonic from lack of calories, and it did seem to fade a bit toward evening. He has a chemo rash extra badly this week, his ears and around his mouth especially affected, his ears all swollen and red with what he calls " bug bites", the acne-like sores around his mouth opening up and oozing a bit. This too makes me think perhaps his ANC is unusually low, because that affects wound healing, but tomorrow's bloodwork will tell. He has also been easily exhausted, but he is in the middle of a big life change, plus he started preschool two weeks ago, and has gone five days so far. And almost every day, he tells me he has bug bites on his lower back, or that his lower back hurts. I know this is to be expected when one has a needle shoved between one's vertebrae into ones spinal column every thirty days, but it still makes me angry that he has to feel the effects of his treatment like this. 

I am so incredibly grateful he is finally talking enough to be able to tell me how he feels, where he hurts. I am finally hearing his thoughts and feelings, as well, and this is so rewarding. He tells me without reservation when he is happy or sad, and we sit together and sort out his feelings and what might have caused them. 

It all 

...I believe I fell asleep. I'm actually amazed I can finish a sentence some days, let

...I swear that wasn't on purpose. Just lovely irony. I sat down to finish this post, somebody needed something, and it is now the next day. I am now attempting to write while a singing, dancing purple dinosaur raises my kids, one of whom is sitting in my lap taking random swipes at the keyboard with his feet. 

My mom instinct was spot on again- as in, not so much. Daniel's ANC wasn't low, it was too high, out of the "anti-relapse" range. If it is too high again next month, he will have to have a chemo increase. We do not want that. Chemo increases come with less than ideal side effects. We want to achieve nicely suppressed neutrophils with as low of chemo doses as possible. He did have some elevated numbers on his metabolic panel, but nothing so high as to cause his caregivers concern. I now believe what I was seeing was detox. Since last month was Vincristine only, no spinal tap with Methotrexate in his spinal fluid, detox was probably extra severe, since it had been two months since his last spinal. Two days after he got more chemo he was lethargic and a little pale, but his rash had cleared up. By now, ten days later, his energy is back, his skin is smooth and clear, he is feeling okay. Well. Except this morning. He woke up saying he did not feel well, and his temp is hanging around 99.2. Not much to go on, but I feel like (with my infallible mom instinct) he might be getting sick. Well. And he was exposed to strep the two days ago, by someone who wasn't symptomatic until yesterday. So I am keeping him close, letting him be a couch potato, letting his body fight without introducing new assaults. The internet tells me the incubation period for strep can be five days, so we'll be on house arrest until Thursday.   

...and it is two days later. Turns out, the strep wasn't strep, just a virus. But Daniel is still running a very low grade fever every afternoon, just upper 99's, and being fairly horrible to his little brother, and I'm feeling protective, so home he stays. 

I have an eye twitch. One of those weird little twitches that starts every time you experience an uptick in your stress level. And the exhaustion. I could happily go to bed every night at 7pm and be comatose until 7am, except my kids don't even consider bed until 9, and I am awake 3-4 times a night to give meds, refuse to nurse, allow nursing, replace covers, soothe night terrors. 

I suppose it is the non-medical craziness catching up with me. The move, the stress, the illicit fence building (more on that later). We've had smooth sailing medically. No inpatient admittances or even ER visits (aside from an injury-related CT scan) for nine months now. Which means, dun-da-da-dunnnn! We have successfully kept him well, in spite of his 25%-50% of an immune system, with nary so much as a fever, for nine months. This, my lovelies, is unheard of. Unheard of! In the case of childhood leukemia treatment. Granted, the kid is sucking me dry. He nurses himself to sleep. He nurses all night. He begs to nurse during the nightly five hours he must be NPO to avoid the enzymes in my milk deactivating his oral chemo. He nurses when he wakes up. He nurses away every sad (and a threenager has a lot of sad.) And guess who else wants to nurse every time he sees Daniel nursing? I feel like a dry husk most of the time. I feel strangers judging me for nursing when they are falling apart in public. But (and yes, we are a study of one) the fact remains that breast milk is antibacterial and antiviral, and guess who has not had so much as a fever in nine months? These kids. Neither the one who is on immunosuppressant drugs nor the one whose immune system lacks nary a neutrophil has so much as sniffled in nine months. But me...oh my... I miss the days when I woke up in less pain than I went to sleep in, as I now wake up hardened into a twisted shape almost impossible to break out of due to sleeping contorted in such a way that two little vampires have access to my mammaries without waking me too much. I miss sleep. I miss my patience as I attempt to convince big that little can, in fact, play with toys, eat food, breathe air. I miss adult music, adult Netflix, adult time for things like walking the dog, and the ability to finish a blog post in less that five different-day attempts. 

Motherhood is blessed and beautiful and messy and wretched and smelly and confusing. I swear some days I can actually feel my sanity dying. And I only have two kids. And they aren't as close together as they could be- they are 27 months apart. That 27 months is easy for me to remember, since Daniel was 27 months at diagnosis as well. So I suppose it hasn't exactly been a normal experience, but does anybody have a normal experience? The part that has me puzzled and feeling like a failure is that now that things are easier with Daniel, I am losing the ability to handle life with a toddler and a preschooler. We weathered steroid storms and sh**storms (literally) and deathly fear of losing Daniel to infections and complications of treatment, but now is when I lose it because my husband comes home from work just as I have finally gotten two hysterical boys calmed down enough they are dozing off at bedtime, and the dog barks, and everyone jerks awake, and they are off and running again. Now is when I lose it over them fighting and tussling on my lap as they both nurse, toothily yanking on my nipples as well as on my last nerve. Now is when I have the luxury of being at my wits end because my 17 month old refuses to wear a diaper and hits, and my three year old helps him remove his diaper and hits back. 

I am that mother right now. I am touched out, am often deaf to their crying until it hits a certain pitch because I just don't have the energy to mediate the battle over the toy car the three year old has decided the 17 month old shall not have, and all I want to do, quite honestly, is wean them and let them cry and fight it out. But I won't. Because I fear breastfeeding is the one thing keeping everyone healthy, and the research suggesting leaving a child to cry without responding to those cries has a correlation with future trust issues makes perfect sense to me. 

Here is where we go wrong in our modern attempts to allow children to experience evolutionary norms that have proven themselves over millennia. We have all the advantages of modern life, such as clean water and vaccines to keep rampant disease at bay, saving our children's lives. We have birth control, enabling us to decide when we have reached or slightly exceeded our litter size limit. We have research galore pointing to patient, responsive, available parenting (do not read helicopter parenting into this; I think we both know the difference) being the best gift we can give our children. What we do not all have is close extended family. We do not have other adults to take our children when we start to look a little wild-eyed and smell due to lack of personal hygiene. 

(Attempt #...6? At finishing this post. 11:17 pm, Oct 6. Two sleeping angels, I have a good feeling about this!) 

Parenting has just been...intense, lately. Daniel is going through something. Maybe it's just being 3 and a half. I suspect he is sick of me. I can't blame him. I'm sick of me. I snap at him, then I remember how empty my life could be right now without him and am filled with remorse. I hear myself yelling. When did I start to yell? I am not a yeller. I am a parent who remembers she is the adult here. Right? At night, when Little is no longer crying hysterically over small disappointments, such as being forced to play with the black toy car instead of the blue one, and Big is no longer ripping every toy Little picks up out of his hands, when they are no longer begging to nurse constantly, when they are warm lumps under fleece blankets, tiny bottoms in the air with perfect toes turned toward each other, silken curls and warm pink cheeks, tiny hands clutching tiny toys in their sleep, so innocent, so peaceful, so beautiful, I whisper to them of my remorse for all the days ugliness against their impossibly soft temples and hope they are too young to remember today, and promise them I will do better tomorrow. 

So about the fence... I went into the office one day to ask if I could possibly start a petition, do some community organizing, be a squeaky wheel in the corporate machine that is the mega company that owns this trailer park. I didn't intend to leak, I truly didn't. My face just started to as I was asking, due to all the stress I had been experiencing, realizing I probably should not have gone to all the work of transferring D's IEP, getting him into preschool up here, because I realized what a germ pool preschool is. I mean that wasn't news to me, but dropping him off his first day and hearing all the coughing about did me in. I no longer have the option to take Alex inpatient with us during flu season, and I have no back-up childcare plan for if we get admitted. I was embarrassed, but I got out my story, and how if I was going to have to spend our entire winter in solitary, so to speak, on house arrest, how was I going to do that while also keeping them off the street every time we so much as ventured outside?

I didn't realize the manager of this trailer park is a leukemia mama herself. She fought this beast tooth and nail twenty-some years ago, almost losing her kid four times, and once a cancer mom, always a cancer mom willing to give another cancer mom the shirt off your back because you know exactly what she is going through. She told us to build a fence and leave the rest up to her. We built the fence. Paid money we didn't really have to do it, didn't think twice about it. Knew it was a first world problem, didn't care. The boys have a safe, secure place to play and no longer run out in the street. My life is so much easier. But every time I wonder how she is going to explain to her boss and other envious residents her allowing a fence in a trailer park that stopped allowing new fences to be built a year ago, my eye starts to twitch and I get a stomach ache.  She doesn't deserve this, either. I hope there is no fallout from it. I hope her job and standing is secure enough this will be overlooked. In the meantime, the fence had to be built in a day, lest her boss notice it getting built and freak put, so we had to hire a crew. With real money. No cheaping out on a DIY project as is our usual. So far nobody has broken our windows or keyed our vehicles, so apparently the neighbors are being adults about our special treatment, but I'm still slouching around with my tail between my legs, fearful of their judgement.

In the meantime, I think our lovely, charmed Indian Summer has ended, and with the first snow came reports from the school of students being sent home with fevers, vomiting, diarrhea, and strep. So far the preschool, which is mostly insulated from the rest of the school has only had fevers and sore throats, but I am keeping him home again today. The preschool is fastidious, for our sake, about sterilizing toys and surfaces, isolating possibly symptomatic kids, and calling me if anything is a little "off" about Daniel or any other kid so I can go pick him up, take him home, wash his clothes and scrub him down in the shower. It's all we can do while attempting to give him a normal life, and it has worked for three weeks, but I fear this latest flurry of sickness, in conjunction with the suddenly cold, damp weather and lack of sterilizing sunshine on playground equipment signals the end of our attempt at giving him a normal kid experience for this winter. 

Life is messy and there is no longer any black and white. It seems hard times, or maybe just the process of becoming more emotionally mature and aware, smudge the lines of good and bad, right and wrong, until ones inner landscape is a monochromatic juxtaposition of happy and sad, hopeful and resigned, moral and wrong, weak and strong. Everything has nuance I never realized before. No story is straightforward, no villain is bad, no hero is good. The educated and uneducated both make dumb mistakes and display brilliant genius. Somewhere in there is the lesson that perhaps life defies classification and must be appreciated for exactly what it is, even when we have no idea what that is. I am trying. Mostly I'm trying to take my own advice and live in the moment. Fail if I must, but love and make amends, rebuild bridges, and be the adult.