Life has been, well, pretty okay lately. At least for me. Bobby might have a different opinion, since he is the one out exchanging time for money on an erratic schedule every day. This week is the "official" start of summer, school let out two days ago, kids are free, parents are free, and Bobby has agreed to try to take two days off every week. They aren't weekend days, of course, but that's okay. Two days a week without his phone ringing at random, completely inopportune times, two days that we can actually plan things as a family, is an exciting prospect we haven't had in...(mental calculations...carry the two...) a really long time. That isn't to say he hasn't had days off, but he hasn't known they were going to be days off when he woke up on those mornings.
The weather is warming up at 9,000 feet, finally, and we are taking full advantage. We planted grass in the ill-gotten and guiltily enjoyed fenced area behind our house, so until it sprouts we can't go back there, and there isn't even a remote chance I can keep these two little natives in the house on nice days even with all the YouTube videos in the world, not that I'd want to, so we spend almost every day out exploring the mountains. In those snuggly moments after they wake, I ask them what they want to do that day, and we build our day's plan around their requests to go to certain parks. I generally try to feed them and clean house in the mornings, then we pack some food and sand toys in the bike trailer, and leave for hours.
Yesterday, we departed from our usual routine, a bike trailer pull to a park. I pulled them up a steep gravel road to a little beach area beside a stream, where we spent hours wading, digging, collecting sticks, building bridges for our matchbox cars and excavating equipment. No cell phone service up there again made me realize how many of their adorable interactions I miss because I use their park playtime to read emails, respond to texts, scroll through Facebook. On our two-day camping trip to Moab a month ago, which we spent in a dead zone in a canyon, I realized this and came home delightfully unhooked. For the next week, I stayed that way and it was nice- I didn't read the news, so it was almost as if it wasn't happening, I didn't see the Facebook memes so I didn't have to experience an emotional response, it was just me in my small world and it was lovely. Of course I also know fully that my privilege afforded me that luxury, that the news and conflict that elicits an exhausting emotional response from me upon reading it is the day in, day out reality for so many others. While I unplug, refugees still die. Bombs still explode. Injustice still wins. Healthcare that we desperately need still gets shoved down the garbage disposal.
But in Summit County, icy water still flows musically downhill. Aspens sprout tiny leaves, the green tinge on brown hillsides deepening by the day. Sun warmed pine sap inches its way down rough bark, birds and squirrels talk, and as trails dry, mountain bikers and hikers crawl like ants through networks of trails interrupted by melting snow. And we are here to witness it. In our part of the world, it is possible to just be. To sit in the intense mountain sunshine and be surrounded by weightless air, the sounds of water and happy kids, caressed by cool breeze, the scents of pine and sage and wet earth all around as time passes unnoticed, days passing, then months...until summer has turned chilly and one awakes one morning to low, milky cloud cover and realizes winter is here again, with its cabin fever and influenza and seasonal affective disorder.
Daniel's latest chemo appointment was two days ago. It's going to be a fun week; his first dose of steroids yesterday morning was already creating a marked personality change by early afternoon. We don't always experience it so noticeably after only one dose, but when we do, we know we are in for a rough week. It is a really valuable reminder to me of how easily manipulated our personalities, the things we consider so uniquely us, really are. I have experienced this myself, of course, with the hormonal upheaval of five attempts at pregnancy, hormone support through pregnancy, and various attempts to find birth control that does not warp my happiness baseline and turn me into someone even I don't trust to be a nice person. I have witnessed it growing up with parents who walk a fine line, making constant decisions of whether to overcome depression and other mental afflictions by sheer force of will or to medicate, accepting side effects as less disruptive to their lives than not medicating. Mental illness has always been a louder, more complicated conversation in my life than physical illness, and I say that as someone who has been support staff (in varying degrees) in three different cancer battles. But watching someone who has only been alive for 53 months, still fairly emotionally unmarred and beautifully innocent, someone incapable of wearing the masks we adults do, take a few small, bitter, powdery pills and turn into a completely different person as a result of slightly increased production of stress hormones, that is powerful. That is a lesson in mental health and tolerance we all need to take note of. We are all the sum of the interactions and synapses and chemicals that make up our physical states, and changing just one thing reveals just how fluid this thing we call "self" really is. That fresh realization always blows my mind and quiets the festering judgements I build up against those in my life I have been measuring with the same yardstick I apply to myself. It also reveals the full weight of those "for better or worse, in sickness and in health" commitments we make to each other. We so rarely take into consideration how easily people change.
And I'm back from the rabbit trail. Daniel's lumbar puncture was uneventful, although he was very slow to wake up and it took about six hours for him to be able to walk in a straight line and not stumble over the floor and his own feet. His first few steps upon waking were a disaster that ended with him on the floor. He recovered quickly, scrambled back up, but a nurse hurried for a wagon so he wouldn't have to walk out of the hospital on his own feet, since they weren't really working yet.
Our last year of treatment starts in August. It is now I am realizing how his being a boy is making his treatment longer. I mean, we were told from the beginning that boys have longer treatments than girls due to the risk of testicular relapse, but that was not something we thought about until now, when some of the girls who were close to us in frontline treatment are nearing the end of Maintenance already, and we still have over a year to go. Our nurse told us we will probably be shocked at how much better he feels almost immediately after he stops treatment, how much he will probably start growing, how his energy levels will soar and his attitude will improve. I am cautious about believing it, having heard other moms also talk about nightmare detox rashes and sickness and immune systems that are slow to recover on their own after so many years of being suppressed, not to mention things like central lines being calcified into arteries after having been in there for over three years. But that stuff is temporary in the big picture, and he has the rest of his life, aside from the next 14 months, to live chemo-free. That is exciting. I won't even go into how 30% (ish) of kids can develop potentially life-threatening long term effects from childhood chemo, and around 90% have at least one chronic effect. He isn't likely to walk away from this completely unscathed, and if the effects he has are mental, we will most likely never know for sure if it came from over three years of relentless chemo in his spinal fluid, bypassing his blood/brain barrier to roar through his developing brain and personality, or the murky gene pool he sprung from.
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So that was three weeks ago. This has sat on my phone (because I blog on my phone, thumb-tapping, these days, because once I sit down and commit to writing, I immediately have two kids in my lap, pulling my hair, fighting, accidentally scratching me as they fight to get inside my shirt, that's a whole other thing) while I've been too busy to write.
The weather hasn't been great the last week or so, we've had some rain and wind, so I haven't been out as much on the bike, which means I've been doing the thing that had me so pent up and beside myself all winter- staying home with them. The thing that had me in therapy this winter, crying in frustration because while I'm still breastfeeding a kid whose body is already a toxic waste dump, I can't take meds for the ADHD that makes me a fun and exciting and exhausting and irritable and unreasonable person, meds that would pass into my breastmilk and possibly alter Daniel's already at-risk brain. I will be honest, even a week at home, inside four walls, forcing myself into a housemommy mold instead of just momming on the fly under a big, blue sky in a beautifully uncontrolled environment has had me uptight and more than a little resentful of Bobby, out there working, problem solving, having adult conversations, doing varied and financially profitable things.
I decided, this spring, to just put a lid on my mommy guilt and do something strictly for me this summer, something on a schedule that was unaffected by me, so I couldn't just cancel when it was inconvenient. So I decided to do the local mountain bike race series. Because
nothing is quite like the sheer therapy of flying over a narrow trail under the sky, pushing oneself, challenging oneself, going fast, balanced on a moving bit of aluminum, carbon fiber, and rubber, with nothing but physical exhaustion and survival to think about. With all that high intensity resistance training of pulling a hundred pounds of kids and gear eighty miles a week, I should be in good enough shape to race, right? Turns out, no. My winter of inactivity, skiing for two hours a dozen times, a few walks with the dog, a few randonee climbs up and powder turns back down the hills behind our house was not enough to kick off my summer with the endurance competition legs needed to be in the top 50% in my race category. I'm struggling to keep up. That part is okay, exactly what I need to stay motivated, but it turns out committing to something when one is a mother and stay at home wife of a person with an extremely erratic work schedule is harder than anticipated. If it weren't for my friend Ginta, who has her own crazy life and busy schedule and two kids, I'd have probably dropped out already. She's been my rock. When she was in my position, with little kids, I did not yet have kids so it didn't occur to me she needed a rock. I really regret not being there for her, ten years ago when we met, me looking for girlfriends in an outdoor community that is like 90% dudes, she newly pregnant but still fooling herself that she could have kids and maintain a crazy outdoor life, like she has been for me.
It has turned out to be unexpectedly hard because each race requires not only to show up on race night, but to preride the course so one is not grinding up a hill with no idea of where the top is, then bombing down a course one is unfamiliar with at a speed faster than one should be riding a trail for the first time. And because my fitness is not there and I am constantly sore from riding, I try to do the preride enough in advance I can take a day off before race day. This means I have to preride on a day Bobby has the maintenance line (Sundays and Mondays) and is on call, so it isn't smart to leave him with kids, lest he suddenly have to go out on a call. Which happens a lot. All that to say, I now realize I probably have no business doing it, as much as I'm loving it. But I'm committed, a local bike shop paid for my season pass and gave me a jersey to represent them out there, so I'll do it if it kills me.
So yesterday, on his one day off this week (because he's already caved on his commitment to take two days off due to pressure to finish projects in the gaps between bookings) Bobby went for a quick mountain bike ride in the morning, then took the kids, me, and my bike to Breck to preride all three of the stages of the enduro race happening there tomorrow. I had a mechanical failure that rendered me unable to ride, so I had to buy new parts at full Breckenridge price, work on my bike, then Daniel fell apart because he wanted to ride with me, which turned into an endless exercise in patience getting him down a long hill, about ten steep, loose switchbacks that didn't recognize his feet as brakes on his Strider bike. I watched helplessly as his speed got away from him, he couldn't stop, and had a big, dusty crash in the trail, then dusted him off and coaxed him back on his bike. By the time I was actually ready to preride, everyone was already tired, hungry, and hot. I did the two short loops, which only revealed that I really needed to ride them more, because they are quite technical, then the eight mile loop of the big stage, and seven hours later, we returned home, my guilt over having subjected them to such an exhausting day overwhelming.
Therein lies the basis of all my conflicted feelings about motherhood, having a sick kid, wifing, housekeeping, and still trying to maintain some level of self and identity apart from them. The guilt. I have guilt when I resent my kids for getting in the way of my plans for escaping the house. I have guilt for escaping and leaving them with Bobby after he has had a long, exhausting day at work. I have guilt for snapping at them when I am pushed beyond the limits of my patience, when we are at home and I am feeling guilty for not having a clean house and everything I do, they follow me around undoing, and I just want one thing to go as planned. I feel guilt for envying Bobby's job some days. I feel guilt for listing these things without the accompanying disclaimer that I love them more than life, and even if I were drowning, they are the reason I would fight to swim. I feel guilt because I only have two of them. I feel guilt because even with only two of them, I still miss some of their moments, still don't give each the one on one attention they deserve. I feel guilt because they sometimes request peanut butter on a spoon, nothing else, for lunch, and I give it to them. I feel guilt because I can't get the house clean without giving them screen time, and I also feel guilty because the house stays permanently trashed when I don't give them screen time.
And then, God forbid, my husband mentions a particular shortcoming, hears me snap at them, chastises me for dropping an errant f-bomb in a frustrated moment, notices the pathetic nature of my attempts at cooking, observes that the bathroom is starting to smell like an outhouse, that one cannot walk through the house without a lego-related injury, that breakfast should include protein, and that big tray of guilt, balanced so precariously on my head, breaks. The guilt cascades down over me, sticky and messy, all jumbled together, each piece so indiscernible from another I have no idea what to even point to as the cause of my current mess. All I know is that he has just confirmed as unjustifiable all the things I have been trying so hard to justify. So we have a fight, because my lifeline consists of removing myself from the guilt, to constantly tell it to stay away from me, that I don't deserve it, so hearing it noted that even one piece of it is, in fact, deserved, means it all sticks to me. And feeling it all stick is just too much, too yucky, so I fight to get it off me and back on the tray as fast as I can. Which, of course, leads to more guilt. Not only have we torn each other down, we've done it in front of the kids.
We need a vacation. Too bad we feel too guilty to leave our kids with anyone else to actually enjoy one. I thought putting my foot down and demanding some me-time this summer would be the answer, but it isn't. Bobby doesn't get to have him-time if I get me-time, and that isn't fair. There are only so many hours in a day, not enough for us both to recharge and be ready for the next day.
I guess I am coming to the realization (again) that people don't just change because their situations change. Bobby's overdeveloped sense of responsibility is again causing him to withdraw, to silently put his head down and plod through the insane amount of work and drama at work, making him emotionally unavailable and impatient with me and my constant need for reassurance. The few reserves he has at the end of the day goes to his kids, as it should. My insecurities and inability to calm myself, focus, and actually finish a task if there is the slightest interruption has us constantly washing around in a state of inconsistency. Repetitive, moving outdoor exercise is the only thing that orders my thoughts and calms my jittery brain, and being out and on the move on my bike is the only time I feel truly calm and happy, which is exactly the sort of thing that is so hard with small kids. In the meantime, because he knows this about me, Bobby sacrifices his own workouts to allow me a little time to escape from my own head, and he gets less healthy, has less energy, while I build muscle, gain energy, feel like, upon returning to the house after a ride, that life cannot possibly get me down anymore.
Lest you think I'm complaining, I'm not. I'm pretty sure if we all stopped trying to wear our masks, we'd all say similar things. I think we all need to take off our masks. I'll go first.
I'm not a natural at this whole parenting/wifing/adulting thing. I envy people who are. But if you aren't, I guess I keep a confessional sort of blog so you can know that you might fail too, but you are far from alone.
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