Is it our third vehicle? But then which one do we get rid of- the car Bobby drives every day, the truck we won't be able to replace for the same money when we need it, or the family tank that hauls us all down to the hospital on a regular basis? Is it the house we want to buy? Do we need to buy? No. But $80,000 lost in rent over the next five years is a depressing thought. The dog. It's definitely the dog. Dogfood is expensive, he limits us in our rental options and forces us to have to pay more to get a pet friendly rental...yeah, the dog is the cake. But you don't just offload the family pet when things get tough. And this particular one is our firstborn. He was our child before our children. And I don't want my children to grow up without a pet. Especially a dog. Vacations would be the cake...if we took them. So would movies...if we went to them. Or dining out...if we did that. Or buying nice organic food...if that hadn't fallen by the wayside. Or cable TV...if we had it. Or gym memberships...yeah, excuse me while I stop laughing. We could sell our mountain bikes, but they are really not worth anything anymore- they are worth more to us in dreams of riding them again someday than the money they would fetch. And our road bikes were never worth much to begin with. And ditto our skis- they are five year old models by now, even though they are in pristine shape. I would think coffee would not need to be a daily expense, those little nine dollar bags of beans add right up, but Bobby seems to think it is necessary for continued functioning. Well. That does it. Clearly, we need to sell the children.
Okay. Confession. My clumsy cake metaphor is influenced by the fact that I am trying to justify the fact that I just ate a bowl of ice cream. With a large dab of buttercream frosting on top. And now I don't feel so hot. The eyes are having a little trouble focusing as the brain whirs and threatens to overheat, my foot bounces manically and I feel all twitchy. This is why sugar is bad, kids. I am feeling the need to self medicate my exhaustion away instead of the obvious fix, which would be sleep. But it is just so fantastic to have the house to myself after the babies sleep, I end up doing all sorts of crazy projects that get me all high on creativity and then suddenly the clock says 3am and I know babies will be waking up at 7...
It has been a heckuva week. It started out with house hunting, Bobby and I looked at a few houses for sale last Saturday and Sunday. Then his phone rang and dispatch sent him to North Dakota for a load of sand to be delivered to Rock Springs, Wyoming. So on Monday, he packed one change of clothes, climbed into a back-up truck because his was in the shop, and bounced ten hours up to Williston while I continued looking at houses. It was a little frustrating having him leave for several days right then, because we had thought maybe we could have a little family time before he left on the 20th for three months for a job in Gillette, Wyoming, about four hours away. He was on his way back, set to arrive home Wednesday night, I put Daniel down for a late nap so he could stay up late to see Daddy when he walked in because he had been asking about him for three days, when dispatch decided to send him back for another load. And under somewhat murky circumstances. The dispatcher seemed unsure, had to ask higher ups if he was really supposed to go back to North Dakota, then they deflected his questions about his load header, usually sent promptly. Sure enough, when he arrived, he still had no load header, and there was no sand for him to haul back. No big deal, said dispatch, just sit there until we find some sand. Maybe we'll have a load for you to haul back Monday. In the meantime, maybe there will be a few local loads you can haul.
No big deal. We should have known. Every time we attempt to make plans, work interferes. We have had days he was available to work turn into days, turn into weeks off in the last ten months, but we have had only a handful of days off we have known about in advance. Like an actual handful- like five. For the last ten months, with the exception of one four day ski trip, we have lived our lives around the possibility of the phone ringing. This means we have not gone where there was no cell service, not even up the road into the mountains for more than a few hours, those sneaked in when he should have been sleeping, in the last ten months. Although apparently management thinks he is luxuriating, lounging about, enjoying a lovely, unexpected mancation at a truck yard in Williston, ND (who wouldn't love one of those?) in reality, he has been sitting in his truck, ready to go, on-call for 168 hours this week. And since he gets paid by the load, we can't help but do the math. If he were making an hourly wage, this on-duty time translates to $5.95/hour. Yep. You read that right. There comes a time when, even though a little money is better than no money, it is worth it to leap into the unknown rather than to stay where one is at. We almost made this leap two months ago, but there was just enough promise by said shrugging management that things would get better, we tightened our belts and stuck it out. But after this last week...nope. It's not okay. Not anymore. Even if they were paying well, by this point our respect for this particular company is so far gone, their lack of respect for their employees so obvious, that staying would cost us our self respect. Which, let's be honest here, is even something we could live without. We've done it before. It's amazing what a person can put up with for a little filthy lucre. Who needs self respect when one is making bank? But when bank dries up, along with the mutual respect, there's no reason to stay. We can average better $5.95/hr in a 120-168 hour work week almost anywhere. Not that we will ever try something so crazy again unless the alternative is literally dumpster diving and living under a bridge.
This little hiccup, barely meriting a minor shrug in management, completely derailed the few plans we were trying to make to spend a little time together before Bobby left us again for three months. And all it would have taken to salvage the screw-up was the acknowledgement by said management that trucks do not drive themselves, they are driven by humans who have lives and families outside of their work. We could have avoided him being stranded with one change of clothes, in a borrowed truck with no food, no microwave, no coffeepot, none of the conveniences necessary to live in ones truck for twelve days in North Dakota, not to mention the loss of time with a family he thought he was going to get to see at least a few days before we all split up again for three months. There have been screwups like this in the past, but none quite so colossal. Or so casually brushed aside. And with the Gillette job looming over our heads, the thought that he would be living in his truck away from his family for three entire months...(cue one, lone, tumbling straw. It drifts downward and lands softly on the pile already sitting atop the strained back of the groaning camel...who crumples to the ground, back broken.) Bobby, who, just to be clear, in no way resembles a camel except in metaphor and maybe ability to hold water if that water is hot and infused with strong coffee, called his supervisor and did what he should have done months ago- quit. Gave his two week's notice. Which was not a decision he made lightly, because with no employment history, our being preapproved for a mortgage flies out the window. We had to turn lose of our dream of no longer renting in order for him to be able to quit the job. He still has to sit and wait for the sand to become available to haul back to Rock Springs, maybe Tuesday. Which will get him home late Thursday. He is so frustrated he says he really wants quit again today, since it felt so good yesterday. But instead of quitting every few hours for cathartic effect, he is reminding himself that the countdown is on, and he will make a few bucks these last fourteen days before we need to deal with the fires this will create for us.
What will we do for, you know, money? Good question. We're working on it. Our one foray away from self employment has been nothing but an exercise in frustration and waiting for someone else, seemingly less motivated than us, to find our work. When one relies on someone else to provide their employment, this means that one has no options when someone else drops the ball. If we were self employed again, as we have been most of our adult lives, we would always have the option to diversify, shake the bushes, try to scare up some more work. (See how I didn't even put quotes around the word "adult"? Yeah, it still feels like we're playing at this whole being grown-ups thing, but nothing will make you feel your age like having no idea how you are going to feed, house, clothe and provide medical care to the small humans you managed to make on two particularly fun Crested Butte mountain biking trips.)
So we are scheming. Several postings on Craigslist by painting companies looking for help makes us think perhaps the house painting scene would be hospitable to another company starting up in town. Low overhead, just a guy with a sprayer, ladders and tools. It's not like we need to go big right away. Even one decent job a month would provide the same income trucking has been providing. It is surprising how low one's standards and expectations can be when one knows one is possibly just jumping from frying pan to fire. Me with my metaphors today, huh?
I have been scheming, as well. Obviously my main job is being mom to these small humans, but what could I do at night or in the evenings, if Bobby actually had a job with scheduled, predictable home time? How could I get a degree while also being full time mommy? Could I write/make/sell/market/grow/sew something to supplement our income?
As I was mulling this over the other night after I finally had the babies in bed, I got out my drawing pad and pencils, something I have not done in years. I have painted a few times in the last five years, but haven't touched my drawing pencils. My last memory of drawing was getting mad at a line that just wouldnt come out right, stopping halfway through a picture, throwing down my pencils, going outside, and then just...carrying on with my life. Eventually my drawing pad got shoved behind a couch where it stayed for many years and my pencils got scattered and lost. I brought my drawing pad home with me from Kansas when we were there for the fair, and just the other day, spent a few bucks on new pencils, kneaded eraser, and rub sticks. Now I have an ally I did not have the last time I drew. I have my ipad, which I can leave a reference picture on. With just the swipe of a finger, I can zoom in so the problem area is the same size as the problem area on my drawing, and carefully, line by line, transfer the picture until it is exactly the same. I did not do this so much for the art of it, or the creativity, but because I was feeling a little sad that I cannot afford to do portraits of my babies right now. Even if we could afford the actual photo session, we could not afford the prints. But cell phone photos, I have by the hundreds, and if I cannot afford to get prints that look professional, what I can afford is a large piece of paper and a drawing as close to photo quality as I can make it. I'm excited and pleased with how they are turning out. I have one of Daniel and Alex, and one of Daniel holding his chemo duck (the stuffed duck with a "port" he got his first week in the hospital so he's not the only one in the family with tubes hanging out of his chest) so all I have left to do is one of Alex. Which I did today while holding him on one knee and letting him nurse, but I didn't like it. The light was weird in the photo and I tried to fix it in the drawing, but it turned out weird in the drawing as well. I took more photos of Alex this evening on the back patio when the late afternoon light softened. I'll try again another day. 
I decided to own the fact that he is sick in this picture. Other times in his life, he will be posing with soccer balls or skateboards or whatever he is into. At this time in his life, his cancer is consuming all of us. But I love the way, in the photo, and I hope I managed to capture it in the drawing, his eyes are merry and sparkling in spite of it. He is one of these people who smiles with his entire face, and the smile transforms him from the thoughtful old soul he usually is to a whole other person, the impish little devil he should be at two and a half.
I googled custom portraits online this morning, and was not discouraged by what I found. Some were amazing and some were...not. Seems like mine are maybe not exactly amazing, but if I do say so myself, they're not as bad as some that are being sold. Well, advertised. I don't know if sold. Maybe that's something I could do for a few extra bucks.
The other thing I have been working on while Bobby is gone is the last few steps to qualify Daniel for a Medicaid Waiver. This is supplemental Medicaid, secondary insurance for insured but medically fragile people who make (or who's caretakers make) enough money they don't qualify for Medicaid or Supplemental Security Income, but who are at real risk of losing the assets they do have due to a diagnosis. This is to keep homes from being foreclosed on, vehicles reposessed, etc, when ordinary people like us who are, for the most part, kinda-sorta "making it" suddenly get hit with high medical bills. This is another thing that is probably going to get complicated, because the medical financial aid programs available change depending on income levels, and we have a very fluctuating income level. It has already been complicated, and now that we don't have a job, if we suddenly drop below a certain income level, the fact that we are on it becomes problematic and legally complicated if we drop into a lower income bracket where another program is allotted to fill the need. But it is something we still jumped through the hoops to do because this current insurance policy ends in November, and since we changed states, we must now change policies, and most other policies start in January so we were facing a gap in coverage. Plus the supplemental Medicaid should now cover prescriptions. I am slowly stopping the hyperventilating I've been doing when I think about all the bills we could potentially get hit with. The biggest bills, we are learning, come from ambulance rides. Because they will use whatever service is available, regardless of who is in-network, we have had to pay half of every transfer so far. And transfers can run into thousands. Our last transfer, from north campus to main campus, the doctor on duty would not hear of us driving him ourselves in spite of the fact he was not critical. I only noticed as I was signing the release that I could have refused transfer. Next time, provided he isn't critical, that is what I will be doing. Although now, if we have Medicaid to pick up that bill, shoot. No worries. Right? For the first time, we are thinking we will be okay. Now that the panic is leaving, we realize it was there. A month or two ago, we'd have sworn we weren't too worried. And believed it ourselves. But now that we have a safety net, it's easier to see the worry we wouldn't let ourselves admit then.
Daniel's hair has started growing back. It never completely left, actually. It just got so thin we cut it short so it was less reminiscent of a certain badly combed-over TV personality and presidential candidate. New down started growing in before the old, longer hairs all fell out. Personally, I can't wait for his shiny little boy hair to come back and for him to more closely resemble himself back when things were normal, but at the same time, his bald-ish head has created a narrative for us so we do not have to explain ourselves. This has been an ongoing theme for us (well, me. I can't speak for Bobby), the feeling that we owe those around us an explanation when something about us does't fit a standard narrative. Which is more about owing ourselves relief from their judgement than it is about owing them anything. During induction, it was the fact that he was a tantrum throwing, overweight, inactive little monster. It was so uncomfortable to feel the waves of judgement, probably real, definitely imagined, radiating off those around us. And the almost perverse pleasure of seeing the judgement leave their faces if we bothered to change their assumed narrative to the correct one. The instant a stranger's view of him changed from entitled little sociopath to tiny hero fighting for his life was...good. Like a drink of ice water on a hot day. Like coming home after a week in the hospital. The stress melted away as we saw them suddenly see us for who we were instead of who they assumed we were.
Now it is the fact that I hustle him away from other kids at the playground, that if I so much as hear a sneeze, I swoop in like a mama hen, brush him under my wing, and sidle away, looking around suspiciously for the culprit. I chase him with a big yellow tub of antibacterial wipes in public places, grabbing his hands away from surfaces, wiping down the ones he is inevitably going to touch, smearing his hands with antibacterial gel every few minutes, shrieking at him to get his fingers out of his mouth, don't lick that, that's not food. I look completely deranged. I look like a paranoid germaphobe, and I'm sure other moms are sitting there thinking, "sheesh, lady. Let your kid live a little. Helicopter parent, much? Creating lifelong phobias and psychoses, much? Poor kid. I bet she's judging me, too, for letting my kid run around licking doorknobs. Well, fine. She's gonna judge me, I'll judge her right back. And maybe tweet about it while I sit here to make myself feel better about having fed my kids donuts for breakfast." As if real-life social interaction isnt enough of a gauntlet to run already.
Enter the bald head. Instant ah-hah. The unmistakeable clue that what you are seeing is a mom just like you, probably not crazy at all, who got thrown into crazy circumstances. Because the most easily recognizable statement cancer makes is that shiny, bald skull. Of all the things it does to a body, the one everyone fixates on is the most visible one. The dark circles under his eyes could be bad parenting allowing lack of sleep and donuts for breakfast. His clumsy, stumbling feet could be a developmental delay. But the bald head is a dead givaway. And immediately, the judgement leaves, and in it's place, usually an earnest attempt at understanding.
And so it all comes down to the question of what kind of person are you? Do you march to your own drum? Do you live not caring that you are being misrepresented? Do you need the understanding and support of those around you, or do you feel it is none of their business? This is not the first time I have come up against this question, this unresolved part of my emotional landscape. Deaths of friends and family, my childhood that was not always placid, the emotional aftermath of three miscarriages have taught me I am not generally okay with people making up a narrative about me based on my temporarily wrecked appearance, I must give them clues to a more accurate one so I am free to deal with my own stuff, already freaking hard, without feeling the added weight of judgement. Apparently I do not do well at all with unjust judgement. And obviously, my son's cancer is all about me. Obviously.
Which is what it all really boils down to. His hair regrowing, and my complicated feelings about it, begs the question of who this is really about. I mean, he's two and a half, so it's hard to know if he feels different, or feels the need to seem the same as his peers. Probably not, at this point. He simply is, regardless of how he is viewed. Self aware he is not. His life is a series of experienced moments lived from a single perspective, promptly forgotten, never revisited, never analyzed. It is me, the adult, who acutely feels the need to conform, to narrate, to honor him, our family, and myself with accurate self-expression. This is probably why it is therapeutic for me to blog about it- my own narrative becomes the official one. Is this okay? Although I strive for objectivity, my feelings are often extremely subjective. This also begs the question...is it okay to make this about me? How far might I take it once I decide it can be about me? We all have our own needs within a family unit, and I struggle with seeing this as strictly Daniel's fight. I see him more as the battleground for our family's fight. I catch myself, all the time, saying things like "our chemo", "we got blood drawn", "we threw up in our carseat", "we had diarrhea running down our legs in the clinic". Which is kinda hilarious, when one ponders these statements literally. But when I think about it from Daniel's perspective, I wonder if I am robbing him of his ownership and his personhood. Or if absorbing him into our family unit is just the natural order of things when one is two. So far, he has seen no need to assert his own personhood in any major way, such as weaning himself, choosing to sleep in a different room than us, wishing to play alone. Maybe me seeing him more as an individual will come when he starts presenting himself as one. Which, now that I think of it, does happen in small ways already- feeding himself, the fact that he takes himself potty and is offended when I suggest he might need to go, his insistance on picking out his own clothes.
And on that note, I should run. Grandpa K is here holding babies, playing with Daniel, and working on my car, which waited until B left to decide to have the battery die every time I didn't drive it for a few hours. Grandpa accompanied us to the lab this morning for bloodwork, trying again to pass to start chemo on Wednesday. If "our" ANC is 750 or above, we will check into clinic first thing in the morning for a lumbar pucture, then stay for the next several days in the hospital getting our first high-dose methotrexate. New chemo treatments are nerve wracking. But this is the first time we have known in advance we will be in the hospital, which opens up a whole lot of possibilities as far as how prepared I can be to be gone. Right now, the carseat cover and straps are in the washing machine after our last vomit episode. Not returning to a hot car that smells like vomit after four days in the hospital? Priceless.
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