Change

Last night, after everyone had been nursed into semi-comatose states, I crawled back out of bed and, for the first time all day, as I was showering, shaving legs that had almost returned to their natural state, and washing hair that has been unwashed for...well, my recent lack of basic hygiene has nothing to do with this story. The point is, the brain had uninterrupted time to ponder things. I used more hot water than I should have. I composed a whole beautiful post in my head about the way our priorities have changed- the things that have dried up and blown away, and the things that have grown in their place. Then I was sad, because it was still stuck inside my head and I would never remember it word for word long enough to get it all out. Writer problems.

Having a kid diagnosed with something scary changes a person. Sometimes in ways one might expect, but in unexpected ways as well. As does every traumatic thing we go through. I think about who I was before our lives took some of the many turns they did in the thirteen years Bobby and I have been making a life together, and realize I am both glad that person is gone, and that I envy her innocence. 

She was kind of a jerk sometimes. Not intentionally, but every experience I have had has given me a springboard from which I could launch into empathy for others in situations she could not have fathomed. It's not like my life could not have been much, much worse. There are many horrors I have no springboard for. I have never been sexually abused or lived with the insidious and often unacknowledged racism that is an ingredient in the fiber of every person's life who belongs to a minority. As a kid, I was overtly bullied only a few memorable times. I've never had to deal with a disability.

We haven't been displaced by war, forced to live in a primitive refugee camp, haven't crossed a freezing, rough body of water in an overcrowded dingy, putting pool floaties on my babies in case we capsize, only to have our new reality become that we are not welcome anywhere we might flee to. We know exactly where our children are. We know whether they are alive or dead, comfortable or starving apart from our care. 

Ok, so there is a lot I can't even begin to empathize with. A lot. 

In fact, my life is pretty freaking peachy. I have the luxury of belonging, of a sense of place and purpose, and am not cut so deeply by past experiences I am debilitated and cannot move forward.

But there are things I have experienced. And experiencing them changes a person. Maybe not always for the better, but it shows a person that to judge someone else is to assume they have the exact advantages you have had. And that such an assumption is probably false. 

I am familiar with the almost unwinnable battle that is mental illness and addiction. People I love have been forced to accept that their illness, not being physical, will never be understood by the vast majority of the people around them. The deep self-loathing, the flashes of clarity that the pain they are causing to those closest to them is not entirely their fault, the fine line one must walk between forgiving ones self for the effects of the illness and permission to use it as a blank check for more damaging behavior, the ultimate acknowlegement that all one can do is to choose to love, to accept love and understand that someone asking for time to heal from the pain caused by your illness is not a personal rejection, and to accept help in whatever form it comes. 

The effects of faith has been a big part of shaping who I am. Specifically, the effects of loving people with opposing faiths, and the buffer zone between them. The sense one develops for the almost imperceptible hesitations, the spaces between the lines that say so much. The feeling that one is valued more or less as a person because of beliefs they hold and the ones they cannot hold. The slow dawning of the realization that one either believes wholeheartedly, or tells beautiful lies to one's self. Questions do not go away when one simply refuses to acknowlege them, so one may as well ask them. Understand them. Learn from them. Accept that sometimes the lack of answers is, in itself, an answer. Our questions show us who we are even more clearly than our answers do. 

The discovery of what it means to love and to be loved, this has been a big part of my last decade. I spent the first five years of our marriage sabotaging us with my insecurities, with my constant need for others to determine where north was on my internal compass. I let us fall apart through so many emotional betrayals, then asked my husband, in so many tests, if he could possibly love me enough to want me after I had gone to so much effort to be unloveable, to prove myself right in my belief that I was not worthy. He left me breathless and my world tilted when he gathered me in his arms as each storm abated and said he would always love me, even when he couldn't keep up with the crazy. After hitting a wall and realizing I couldn't live with the self-loathing, that I needed to see myself as a "real" person, to stop acting and start being authentic after years of trying and failing to be what I and others wanted me to be, I threw up my hands, dropped the act and showed myself as I was to the world. The world didn't even notice, let alone recoil. That was when I realized it wasn't about me. I realized that, as I was using others to determine my north, they were using me to find theirs. All around me, people are...me. I am not unique in the least. This was a profound, life-altering realization. Obvious, yes. As I was looking for kindness and acceptance, for any indication of where I fit, I was too self-absorbed and distracted to give those same things to all the floundering souls around me. 

I wish I could say the eureka moment was an instant and complete life overhaul, that I have lived facing outward instead of inward since that moment. Let's be honest. One doesn't just change three decades of insecurity overnight. But the more I stick my neck out, the more vulnerable I make myself, the more honest I choose to be, the more people just...don't notice. They live their lives as if they have better things to do than attack me. Whodathunkit. 

There are people in my life who show me north. Not by some tug on an internal needle, but by being the northern lights. Their own Aurora freaking Borealis. They dance, arcing and slicing through their sky, and I stop and watch in awe, and realize again that it so isn't about being worthy, or being lovable, or being envied, or being admired...it is just about being. Not expecting more of myself or of anyone else than the best versions of us. 

My mom always told me I couldn't please everyone or make everyone like me, but I spent my teens and twenties trying to do so anyway. In my teens I tried to be smart so the grown ups would like me, pretty so the boys would like me and funny so the girls would like me. I wish so badly I had realized that the exact thing I thought I could not do as a younger person is the very thing that, weirdly, makes (the right kind of) people like me as an adult. And that thing is...? Wait for it... 

Honesty. I know, rocket science, right? 

It turns out, almost everyone wants what I want. It turns out, frizzy hair is easier to connect over than shampoo commercial locks. It turns out, I'm not the only person in the world who wears yoga pants three days in a row and throws a towel over the spot where the kid peed the bed so I don't have to change the sheets in the middle of the night. But I wouldn't know that if I hadn't volunteered that information about myself first, and risked judgement to find solidarity.

But as for the specific ways Daniel's cancer has changed me...

I squirm a little when people call me strong. I suppose I'm not curled in a fetal position around a cupcake and a bottle of wine (all the time), so I can claim some small amount of strength. But so would you. When the fecal matter hits the fan, people don't automatically get strong, they just compartmentalize. You hear "Your child has cancer", and you think, "Is this actually happening?" At the exact same time you are also thinking, "If this doctor doesn't leave the room very soon, how can I make absolutely sure I fart silently so I can blame it on the kid, and also gently enough it doesn't pop a stitch?" (Well. You might think this if you not completely classy, are nine days past having pushed a watermelon-sized human out of a not-watermelon-sized orifice, and are still somewhat held together by stitches down there with a digestive system still partially located up in your chest cavity that has not yet adjusted to having your insides to itself.) Because life really does go on. And you will go on with it. Nothing stops the progression of one day to the next. You can flip out if you want, but deep down, you know that it takes an immense amount of energy to flip out and then put yourself back together. Best to just never flip out in the first place. It's not strength. It's just math. It's not strength that keeps you from sobbing until you are hiding in the shower, it's that you lack the strength to handle the embarrassment of complete strangers seeing you completely lose your...fecal matter, on top of everything else. 

I am often shaky with feelings of relief, having escaped a worse diagnosis. Other kids have died. Relapsed. Lost body parts. Are permanently disabled. Died. And did I mention died? Life is so incredibly precious. Sometimes the reality of Daniel's weight in my arms, the coating of fuzz on his warm head pressed against my cheek is so life affirming it takes my breath away. He is so incredibly real. His voice plucks at my internal strings. He is here. And in that moment, and every moment I remember to remember it, that is enough. Everything else is just noise. 

He pretty much tries to burrow back in my womb sometimes. And sometimes, I wish he could. I have true anxiety about letting him out of my sight. I am not entirely stable when I'm not around him to see with my own eyes that he is okay. I don't know how B leaves for work and trusts me to keep these two fragile humans okay all day. I know B is a good dad, but I still leave him with an almost offensive list of hazards to watch out for when I leave them with him. I know someday I am going to have to get past this unhealthy codependence and this terrible knowlege that lightning does indeed strike. That is someday's problem. Before he was diagnosed, I did not have this possibly unhealthy need to protect him from everything forever. But now, I cannot even wrap my mind around being able to leave him with anyone else and take a vacation somewhere, sans kids. It is eerie just being here without him the hour and a half he is in preschool. It makes me imagine an alternate reality where he is not in my life and I feel an overwhelming need to find him and squeeze him immediately.

I feel incredibly guilty whenever I complain. He's alive, isn't he? What more could a woman want? But also, other moms think I am judging them far more than I actually am for complaining about their non-sick kids. I mean, I get it. Your kid being a totally healthy little jerk is truly, legitimately disrupting your life. Mine gets legitimately disrupted when my sick kid is a jerk, but I can't say that to a mom whose kid will never, ever have a chance to be a jerk again. Yeah, I really do think, when you say that, "what must it be like to have that be my biggest problem?" But you think I am thinking it in this voice:

When I am actually thinking it in this one:

B and I are closer than before, but also harder on each other than we were before. Especially with decisions concerning the kids. We seem to have developed this understanding that there is no agreeing to disagree. No submitting to the other for the sake of peace. Not with medical decisions. The stakes are too high for politeness or submission. What to have for dinner, sure, that we can compromise on. But not when to call in a fever. Not whether or not to go with standard treatment or a clinical trial. Not whether to take the time to drive Daniel to Children's or go to a more sketchy but closer local ER. We present our case to the other, work out the pros and cons, throw our most convincing arguments against the other's most convincing arguments until we reach a consensus, and are both sure we are doing the right thing. Because if we should happen to make a decision that would somehow end in harm to Daniel, and it was a decision made by one of us and merely given in to by the other, neither the one who made it nor the one who disagreed but didn't challenge it would be able to forgive themselves. At least if we unite in making the wrong decision, we will be able to work through that together.  

And last is a blessing that usually comes with age, but sometimes gets sent priority to those who need it sooner. Even with my past experiments with authenticity, this experience has given me the ability to finally, finally just let the chips fall where they may. The one thing I do not have the patience for right now is drama. It is just easier to shrug and walk away. Maybe it is just the exhaustion. I don't now. Bigger fish to fry. I am too tired to accommodate righteous indignation. And that is freeing.

Okay, enough of the shower time reflection. My legs are super smoothly shaved and my hair is squeaky clean after having composed all that in my head.  

As for news, Daniel has finished his first 29 days of maintenance. He had another spinal tap on Friday. His counts were all in normal range, including his ANC, which was 2,200. Too high, in fact. The optimal range through maintenance is 750-1,500. They won't change his med doses during this first 84 day cycle, they will just observe to see how he is responding to it. I got the impression that the staff is losing patience with his night time nursing, suspecting I am sabotaging the oral chemo with milk. They may be right. Now that nausea and nutritional deficiencies are less worrisome, there is more pressure on me to wean him. 

It's as if he knows this, and compensates by upping the demand. He is also going on almost four weeks of boogers and coughing. The plugged nose changes his latch and brings back the aversions I felt during pregnancy. I have been using this opportunity to teach him about bodily consent. I have been using "I don't want to" or "I don't like that right now" as a perfectly legitimate reason why he cannot nurse right now, and helping him process the disappointment. At bedtime, I have started nursing him until I feel him relax a bit, then make up an excuse to leave the room, promising I will be back to check on him. He usually falls asleep on his own. It's a baby step, but a major one. 

His potty learning is almost impeccable. He almost never wears diapers anymore. Again, he has spared me a rite of passage by doing something on his own that I was supposed to teach him. Not one bribe or reward, just a slow realization of his body's signals and a desire to do things adults do. Right around his third birthday he started either going all night without a wet diaper or waking up to go potty. I say almost, because about once a week he will have an accident, which bothers him far worse than it bothers me. 

The difference between these two babies is remarkable. After Daniel, Alex astounds me with both his lack of mechanical prowess and his blooming social skills. I have suspected Daniel might fall ever so slightly on the autism spectrum from a young age, but did not really have anything to compare him to except my peers' kids. His Early Childhood evaluators have also noted a slight hesitation to make eye contact and initiate interactions with others, in combination with an easy grasp of mechanical concepts and excellent fine motor skills (he can stack blocks much higher than expected for his age, easily open and close jar lids and perform other specialized motions, and sail through other tests.) This doesn't concern me in the least, knowing that the spectrum is just that- a spectrum, and he still has the ability to maintain healthy relationships in addition to being utterly enthralled by moving mechanical parts. But this is another area in which I am so thankful to live in the age we do- we have greater understanding now than we have ever had of the rich tapestry that is humanity, and the ways in which none of us fits a mold, all of us uniquely amazing. But it also reminds me how important it is that I provide him with touch, keep him engaged, model empathy and emotional maturity, and encourage him to interact with humans of all ages. The photo at the top of this post is of the look on Daniel's face while mesmerized by moving mechanical parts. This was on a carousel at a local festival Valentine's weekend. 

Alex is the one who makes up silly games in his baby way, then manipulates us into playing them with him, who possesses a vocabulary at ten months Daniel did not achieve until around sixteen months, the sheer noise of which Daniel never did make, who dissolves into giggles and squeals upon making eye contact. He thinks the big red rubber ball that I could never truly interest Daniel in is the most amazing thing ever. At the age Daniel was discovering organization, studiously lining up his toys, showing utter disdain for icky sticky stuff on his hands and face, Alex is eating dirt, squishing bananas between his fingers, playing in mud, and has absolutely no concept of organization. I am glad to see Alex unbothered by the many things that are sobering to Daniel, even as Daniel melts my heart many times a day by taking life so seriously. A son of his father, the bigger one. As for the smaller one, it is a daunting task raising a small version of myself. He is all over the place, mercurial, whimsical and entertaining, but also completely dependent on others to reassure him when his world so frequently gets upended. I want to freeze their innocence. I don't want it to end. I am so not ready for big kid problems.

But it keeps coming. Life, that is. Every time the sun rises, you are either dead or you experience change. 

Our latest change is "school". It's not really even preschool, just an hour and a half of a therapeutic play class two days a week at a local school, in a classroom and playground. Daniel loves it. The five days a week he does not go all have that moment in the morning when he realizes school isn't happening, and he gets sad, sheds some tears, and has to be distracted. But I kind of hate it. For that hour and a half, I have to trust strangers with him. I know this is a part of most parents' every day life, but I have spent nearly every waking and sleeping moment of the last three years with him. I know that time is coming, that every moment I spend with him now is to ready him to leave me, but he is far more ready for it than I am right now. And most likely always will be. 

I'll leave the state of the job search update for next time. Basically, we don't know enough ourselves to talk about what we are planning to do. At the moment, B plans to quit next week. After that, we will start pursuing all the things we have been considering as possibilities, but have been unable to even research because of the insanity of the existing job. It's almost as if we need to jump off the cliff before we can start grabbing for tree branches to break our free fall. We just hope that one of those branches we grab for will shake the bushes enough to have an opportunity fall out. Preferably one that can get us back on track with our whole "plan". Go ahead and laugh. You won't be the only one. We made plans, and fate laughed. We can take a joke. We just hope we can still get the last laugh.

Cherry on top

I know, another one so soon. Not to worry, I'll be back to fewer updates soon. But for some reason, not having slept more than a few hours of the last 48 has me feeling jittery, or maybe that's the death-by-carbs spaghetti noodles and five cookies I had for dinner when I walked in all hungry and stressed out. Or I've held my eyes open for so long my eyelids have gotten stuck.

Even though I know better, and I truly, deeply know that we have everything because we have each other and alive kids, I have stated a few times that this week has pretty much felt like a big suck sundae with a cherry on top. 

I wrote that last blog post, published, then proofread it, then idly browsed the internet on my phone while Alex was napping beside me on the bed. When he woke up it was dark in the room, having gotten dark outside, and I was all blind from having stared at a bright screen for the last hour, so when I picked him up and scooted out of bed I did not see the snoozing dog-beast on the bedroom floor and pretty much t-boned him. Smacked into him broadside. As I was pitching over him, headed for the floor, I made a last ditch effort to not fall while holding Alex, jumped over the dog and had no time to get my foot to clear the carpet, so I came down with my entire weight, plus Alex's 20.5 lbs, on my toes. And then landed heavily on my knees. Rattled the house. Then I sat on the floor clutching my foot with one hand and Alex in the other, in too much pain to cry or curse effectively. Over the course of the evening, the toes all eventually stopped hurting except one, and that one is still swollen and refuses to be bent. I'm assuming I probably broke it. So the last two days I have been pretty much unable to wear shoes, except my extra big snowboots, and even they have been uncomfortable. Even the weight of bedsheets on it has been painful. Not that I've had to experience too many of those.

Alex and Daniel got sick. Yes, I took them out and about. Who knows where they picked it up. Could have been on any surface anywhere. I made the choice to try to have a life with the uncertain neutrophil situation, and it bit me...except not quite as feared. Daniel is affected, but not like Alex has been. I actually think it is a fairly mild case of laryngitis, mostly, and a fever, but I managed to birth a small human who inherited my childhood croup issues. His tiny little airway nearly closed off when his vocal chords became inflammed. I put him to bed about nine pm night before last, fell asleep next to him, and about eleven, I woke to what I first thought was loud snoring, but then realized was actually loud stridor. Both his inhales and exhales were loud, wheezing honks. I got up with him, dug in the crawlspace and emerged with our tote of medical supplies, located the nebulizer and albuterol and gave him a breathing treatment, which did nothing. Then I took him outside in the still, muffled night, oddly lit by the city lights reflecting off the low snow clouds, and stood holding him on the back porch to allow the cool air to soothe his vocal chords. That didn't seem to do much either, so I took him downstairs to the basement bathroom, ran the hot shower until the room was steamy, started a humidifier, and sat on the floor with him the rest of the night, watching his lips to make sure they weren't turning blue as he struggled to breathe. I was ready to take him to the ER but hoping I wouldn't have to- we just started over on our deductible, so medical visits are essentially out of pocket right now. It was light outside when we emerged, and I was feeling fairly zombified by lack of sleep, not to mention sorry for myself and stressed out about Alex's partial airway obstruction.

With daylight came slightly easier breathing, or maybe just my perception of it changed since things are less worrisome in the daylight. B left to get groceries for breakfast. When he returned, instead of cooking I left Daniel downstairs with his dad and took Alex upstairs with me to nap. We both slept for about an hour, Alex propped up over my stomach, sleeping upright to help his breathing. He woke me up by becoming noticeably worse- the gaps between his ribs and the soft spot below his throat pulling in more deeply with each wheezing breath, and although his lips were still baby-red cupid bows, the skin around them looked a little dusky. The clinic was finally open so I tried to get him an immediate appointment, but they couldnt fit him in. I eased my throbbing toe into a big, sloppy snow boot and drove him to Urgent Care. They took a look at him and told me to take him to the ER. When I tried to protest, the doctor looked at me sternly. "Do you want to take him yourself? I'll let you because he's still alert at this point. Otherwise I'll call an ambulance." Message received. 

So we sat in the ER until 7 pm, when they finally decided he simply was not going to start breathing well enough to send him home, even with repeated nebulized racemic epinephrine treatments and dexamethasone. After all that epi and steroids, he was cranky but completely cranked up. I hadn't eaten at that point except for half a banana and a donut for breakfast (the donut was a treat, intended to be chased by an actual healthy breakfast, but I took that short nap instead, and then we went to Urgent Care). I barely even remember those last few hours because I was nearly on the floor. My sense of humor was nowhere to be found. We were admitted and entered in the hospital's computer exactly four minutes before the hospital kitchen closed, so I ordered food while developing tunnel vision and then pretty much just sat on my bed swaying and somewhat unresponsive instead of helping nurses wrangle a legitimately insane baby who was flopping, screaming, kicking, grabbing, rolling around and trying to climb out of his crib while they tried to hook up his pulse oximeter and get his vitals. I ate, drank some water, and realized I might live.

He slowly improved. I fashioned a carrier sling out of a bedsheet, put him in it with access to boob, and bounced and rocked until he relaxed, then nursed himself asleep. He slept extremely lightly for the first few hours, requiring me to sing and rock often to keep him from crying and scrambling out of bed every time he opened his eyes, but as soon as the epi wore off he fell into a deep sleep, accompanied by loud stridor and dropping O2 sats, so the nurses came in to put oxygen on him at the same time the respiratory therapist showed up with more racemic epi. 

Perhaps it was my lack of sleep, but whenever the respiratory therapist talked, it made me simmer. I asked if we could remove the mask and just do a blow-by treatment, since I could then nurse him and he could be completely calm while breathing it in through his nose. "No. We can not do that." I tried to sway and bounce him on my hip to calm him to get his O2 sats up. "Okay, mom. We're going to stop moving around now." It may have been my exhaustion, but everything she said sounded condescending. I was nearly beside myself. And that doesn't usually happen when we are in the hospital. I am Suzie Freaking Sunshine while we are in their care. It becomes all about the kids, I switch off my own stuff and become unflappable. Generally, I really am the most genuinely unbothered person while inpatient. I've worked in a hospital, and know that while no nurse or aid will admit to having favorite patients and parents, they do. And it greatly behooves a parent to place herself on that short list for her child's sake. I know we are not the only patients there, and far from the most emergent, but we can at least try to be the most understanding and nicest. And being the nicest usually works out well for us. They know we legitimately need something when our call light goes off, and the one or two requests we make aren't burdensome to them when we rarely ask for anything. Our nurses were obviously very busy, but they were cheerful. It was literally the first time in nine months of bouncing in and out of emergency rooms and hospitals that I developed a chip on my shoulder for a staff member. It was quite possibly my own issues at that point, but for some reason, one night in a local hospital with Alex as the patient was ten times as stressful as ten nights in Children's with Daniel as a patient. Just the whole situation. Especially the fact that this was not the oncology ward, with the best, most sterile housekeeping techniques. It was a regular hospital floor full of RSV, influenza, you name it. 

They wanted to keep him a second night, but I practically dropped to my knees begging to be discharged. Daniel was at home begging for mommy, coughing and sounding hoarse, and since Alex's virus also presented with a 101.8 fever, I was fairly certain we would be needing to take Daniel down to the ER at Children's soon. Not to mention I could almost see the viruses swirling in the air around us, and unlike Children's hospital, nobody was gowning up to come in our room with our obvious need for droplet precautions, so one could be fairly certain they were coming straight from other patient rooms in which no protective gowns had been worn, either. It made me even more thankful for the precautions we have grown accustomed to on the pediatric hem-onc floor. 

They reluctantly discharged us with many instructions involving keeping him calm, breathing cool, moist air, and bringing him back immediately if he developed more stridor, since this seemed to be a croup episode that was reluctant to end and his progress could reverse quickly. He developed mild stridor during the night again, but not nearly to the degree he had had the night before. By now he is doing fine. The adults and Daniel all have what he had, but our vocal chords can take a beating without squeezing our trachea shut. That's just poor baby design, if you ask me.

And Daniel's "fever" topped out at 99.8. Boom. No trip to Denver. 

By the way, it is now two days after I started this post. Once I sat down and started to write, I unwound quickly, then babies woke up crying, and we all ended up in bed asleep shortly after I started it.

But that whole thing was only the sundae. There was also a cherry on top.

This ongoing work situation. Again. Always. 

The oilfield trucking company B works for got two frac crews to follow around and provide sand for. This was a bit of a windfall for them after having struggled so hard for so long. In fact, just a few months ago, they laid off a whole bunch of drivers. They asked B, as a courtesy, if he wanted to be laid off as well, but he was only a few weeks from collecting a longevity bonus that was worth several months of unemployment so he declined, saying he may quit after he got the bonus. About the time he got the bonus, worked seemed to pick up again. They rehired drivers they had laid off. They hired even more. They finally convinced B to give up his truck and take a more managerial position.

Tangent: We don't love the oilfield. It's been a necessary evil to keep us afloat, but we support the need for alternative energy and less oil, and feel like we have to state that to our more progressive friends whenever we admit we work in the oilfield. We'd love to have a job we didn't feel the need to apologize for. Tangent complete.

Around the first of January, B finally started working in his new position as an on-site field coordinator. He left around 3 (either am or pm) and returned around 6, fifteen hours later. We saw him about two hours every day, as he was eating and preparing to leave, or eating and going to bed to sleep and prepare to do it again. We hung blackout shades in the spare room so he could sleep during the day and I tried to keep babies quiet for seven hours in the middle of the day. He walked 5-10 miles per shift, backing trucks in, telling drivers where to go, monitoring safety, turning in sand samples and paperwork, helping teach new hires how to unload, and lost fifteen pounds in three weeks. His pants started falling off. Then they lost their next job, so he has been home recovering for four days.

It really didn't come as a huge surprise when, as I was sitting on the ER cot wrangling a squirmy baby, B texted. "Well, it sounds like I lost my job. We lost one crew to another company, so I can work 40 hours next week with the other crew, then it sounds like we're out of work."

You'd think this would be the big setback of the day. But we've done this before. We've been told this is the end, freaked out, started looking for work, and then they've come back with some sort of counter offer. "Keep working for us, and we will try to find you some over-the-road work". "We'll send you to North Dakota for a few weeks". "We'll give you a minimum guarantee if you come work in the shop eight hours a day." And we've always come around to the fact that some money, if not enough to pay all of our bills, is still better than no money. It has been hard to make that leap into the unknown when we can stay where we are, not doing particularly well, but also not dangling over the abyss with no safety net. Not to mention we have had reason to hang on with this company because they know B is a good enough employee they will make a few sacrifices to keep him around, like allowing him to take time off for hospital stays if he really needs it. Any new employer would have no such assurances. 

So now we wait. Maybe they'll lay him off, enabling us to apply for unemployment while we search for our next thing. Hopefully. We wish they'd just rip off the band-aid already, instead of tugging on it every few months or so and then sticking it back down again. Maybe they'll find something less than ideal, but better than nothing, enabling us to keep subjecting ourselves to the insanity and uncertainty of each paycheck possibly being our last. What we do know is there will be no more overtime, which is what had us slowly gaining on our finances again, seeing hope for the last three weeks that things would get better. 

Not to mention they way B worked so unbelievably hard, ninety hours of night shifts one stretch without a day off, literally worked himself sick, lost all that weight because he just didnt have time to eat, just so we could take Alex to the ER and then be admitted. Because we just started over on a new deductible. And I'm sure, as anyone who is currently insured will notice, those deductibles are a killer. It completely ate up B's 118 hours of overtime he had put in the last three weeks. I only wish that number were a typo. We had actually started to think, if we could find some super cheap tickets to someplace warm, we could afford to take a short vacation the next time he got a 72 hour "weekend". I have all the $98 flights out of Denver memorized for the next two months. But no. Our vacation was exchanged for two days in a medical facility. 

But even that isn't the whole cherry. Our insurance is still Kansas insurance. It is a five year old plan with lower premiums grandfathered in, so our premiums are "only" about $620/month, and we managed to get 18 months of continuation coverage when we moved back to Colorado. Our coverage officially expires in three months. Daniel now has supplemental Medicaid to cover whatever our private insurance won't, so we don't need to cough up any more payment for his actual care, so literally all we were trying to do was make it three months without Bobby, Alex, or me needing medical care, because we have to get new insurance and start over with new deductibles in three months. And we couldn't do it. So it would be one thing if we now had a year to enjoy the benefits of having already blown through Alex's deductible, taking him in for every croupy wheeze, but we only have three months until we start on another one.

And that's the cherry on top. 

I know I've said it before, but it bears saying again. Adulting is for the birds. 

I'm not whining. I truly am not. I'm writing this all down for myself, to record the way things are right now, so in the future, when things are better, I can read back and compare how good they are. Because we tend to remember the best of times and not the worst of times, when remembering the worst of times might help us celebrate better times. It helps us see, in hindsight, the beautiful way things worked out. And it isn't as if it couldn't get so, so much worse, and for that we are incredibly grateful. We have life. We managed, against the odds, to procure financing for a mortgage to get our monthly expenses down from what we were paying to rent, and the local housing market is insanely tight right now, so we know we could get our money back out of it if we need to. The cancer thing is managed, considering how much worse the diagnosis could be. Daniel is alive, all wiggling, giggling thirty four pounds of him, sprouting white-blonde fuzz on his head and growing out of shoes he just grew into, and that is worth everything. Everything. So many parents who have lost their babies to cancer and other horrorific diseases and accidents would gladly opt for scurvy, rickets and homelessness if it meant having them back. Nothing matters, nothing is worth complaining about when held up to the magnitude of losing a child. We are absolutely okay.

And we aren't asking for monetary help. As I told my parents the other night, discussing this, we would rather have someone help us help ourselves than outright help us. Temporary jobs, maybe. There is always someone else who needs outright help so much more than we do. While it is discouraging to literally work our butts off (wait, only B did that. Mine is definitely still there), only to lose every dime we just made on another setback, it is just that- a setback. We are still afloat. We can still buy groceries and make house payments. 

We have lived below our means for the last ten years, pinching pennies and saving them for the future we wanted. While we didn't see our savings going to pediatric cancer and paying the bills because work dried up for three years, while it is incredibly discouraging sometimes to see our dreams being traded on mere survival, while the effects of those ten years of tightened belts shrinks every month our expenses exceed our income, it is there to deplete. We worked ridiculously long hours getting out of debt, put off having kids until we had a few savings, made huge sacrifices so that at some point, life could be better. And it is. It just isn't how we pictured it. We thought we would be self employed with seasonal work, and would spend winters exploring new places, giving our kids amazing adventures, climbing volcanoes and camping under unfamiliar constellations, eventually deciding if we should homeschool on the road or put them in school, in which case we would decide which beautiful locale conducive to an active, outdoor lifestyle to plant our wandering feet in permanently. So that's probably not exactly what is going to happen anymore. But we have these two precious humans, and we still have dreams. They have just been back-burnered. And are somewhat less plausible now that they are no longer anywhere close to being financed. Maybe we can salvage them eventually. Maybe this summer we can finally bust out of our faltering oilfield employment, hang out a shingle for a house painting business or something else that requires minimal overhead that can be compensated for by B's ridiculous work ethic, have the phone magically start ringing, and pick up where we left off. 

But. The next time we hear someone say that anyone can get ahead, they just have to be willing to sacrifice and work hard, that one hundred hour work weeks are the path to success, that saving a little every month will finance one's dreams, we may act on an overwhelming desire to punch them in the throat. 

$1.3 million, by the way. That's what we and our insurance (mostly our insurance) have paid so far to save Daniel's life. We're still keeping track. Just saying. Be insured. We weren't cancer parents either, until we were. Thank goodness we had insurance when that happened. 

Link to my Evolutionary Parenting guest post

...that I meant to link to when I was talking about it, but forgot to do so.

http://evolutionaryparenting.com/guest-post-nursing-my-child-through-cancer/