We spent this morning at Childrens. We planned to spend all day, but apparently we didnt look at our calendar very closely- we planned on cyclophosphamide plus six hours of fluids, but all we got was intrathecal methotrexate, a new insuflon for the next three days of cytarabine injections, and they had trouble drawing blood through his port, so forty five minutes of letting an injected enzyme dissolve a small stubborn clot. It took him a little while to wake up this time. I will admit, I was a tiny bit jealous of his propofol. A guilt free, mandatory nap after some of the short nights we've had lately? Don't mind if I do. Of course, considering it has been responsible for a few high profile deaths by misuse, including Micheal Jackson's, I will probably just leave administration to the professionals. But bubba did look so very peaceful...
When he woke up, we escaped Children's and went out for burgers with Uncle (B's brother) Jay, Aunt Wendy, cousins Ariel and Ahna, who were on their way through Denver, going to Summit County for a getaway. It was the first time the littlest cousins, born two weeks apart, had seen each other. Not that either of them cared. One (mine) screamed bloody murder unless he was being held by a standing, bouncing adult (me), then fell asleep just as everyone else was finishing eating, leaving me to eat almost all of my meal alone in the restaurant as everyone else went outside to play, and the other one skipped the drama and just slept most of the time.
Every day, a new wonder. Today Daniel walked more than ever before, holding onto an adult's hands with both of his hands for balance and support, stumbling and shuffling after Ariel as she ran and played in circles around him. He giggled as he tried to catch her, completely unphased that he never succeeded. He is almost never around kids, and never around kids he knows. It revealed to me (again) how important it is to find him friends his age. He expended more real effort toward self-sufficience in twenty minutes of real children's play than he has in months of humoring the adults in his life.
It was a little bittersweet, because this is our last day all together possibly until July- B decided to stay at least three more weeks at his job, taking some offered work in North Dakota. The other day, upon hearing the news that our job as we knew it was no longer existant, our knee jerk reaction was that we would not, could not split our little family up like that, but in several days of job searching, we decided we need time. Time to find something that is going to work long-term for us, not just jump into another fly-by-the-seat-of-our-pants oilfield job or trucking job with inconsistent income and a schedule we know is going to wreck us, but taking it anyway because we are afraid we can't do better. And in order to get the time we need, we need money to live on as we search. And in order to make that money, we need time. Oh, dear. Funny how these things work themselves around in circles like that. But the good news is, North Dakota pays a little better than here. As long as he actually gets the loads he thinks he will, and doesn't end up sitting and waiting indefinitely in the massive machine that is the oilfield, it should take marginally less time to make marginally more money than is possible here.
Neither of us have worked a "normal" job since 2002. Since we started working for the lodging company in Summit County, we have not had regularly scheduled days off and have been attached to phones, being available at a moment's notice. In a way, this has treated us well. I believe my longest stretch of working without a day off was 41 days, I have no idea what Bobby's record is. But then, at the end of it, mud season always hit, work let up and we had weeks at a time to go to the desert and bike, and then an extra few hours a day in the summer season to spend exploring the mountains. Then we decided to go back to Kansas so I wouldn't have to work and we could have a baby. B ran his own business, and that also gave him very few days off in the busy times, but weeks at a time in the slow times. We have lived feast to famine, to feast, to famine for twelve of our thirteen years together. We've learned to live like we are broke when we are making bank, then allow ourselves one luxury of a celebratory vacation or purchase at the end of a particularly busy time, and then to live like we are broke again when we have no income and are digging into our savings from the busy time, because we just never know what's ahead.
Except now we are thinking it might be time to try living like "real" people. Maybe it's time to try this 9-5, Monday-Friday, paid sick days and vacation days thing we keep hearing about. Sure, our souls may wither a bit, but this thing we've been doing, living from phone call to phone call, never knowing if the phone will ring in the middle of dinner, middle of the night, middle of nowhere the one time we try to get out of town... Well. That isn't soul-sucking at all. At least with a real job, we would know that every Monday morning was exactly five days away from two guaranteed days off, and every Friday was only two days away from more income.
Maybe I'll spend the next few weeks somewhere besides here. I have no plan. What I do have is a leash that is Children's Hospital, and a vehicle with a big enough back end that me, an infant and a toddler can sleep in it. Which is really the only place I feel comfortable sleeping with a nearly neutropenic toddler, I can't really ask anyone to sterilize their entire home just so I can couch surf. I may just driveway surf so I can see some friends this next week, maybe picnic in the mountains. B thinks I am crazy. Perhaps I am. I do feel a little stressed out at the thought of needing to be the adult-in-charge for the next three weeks.
So I did the only logical thing- contacted an adultier adult. I believe my babys' godmama Mary may come join us up here for a bit. My parents and possibly Aunt Marci, as well. Might be an excellent time for girltime as well as baby time for them. All my girls possess those (quote-unquote) real jobs, but they all seem to think that playing the cancerbaby card will get their employer's sympathy. Even real bosses sometimes have heartstrings.
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