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.