Fits and starts

Hello and welcome back. It is definitely my bedtime, but I've just eased myself back out of bed, out from under two tiny, finally sleeping bodies. I should still be there, but these last two weeks have been nonstop mothering. I need some me time. 

We haven't really found our groove in Summit County yet. I had a little more time to write in Loveland because we had a back yard. They played, I sat inside the patio door at the table and watched them play while I wrote. Here, I must constantly hover because our front door opens onto the street and no matter how sincere a three year 

old's promises to stay on the porch might be...ain't happening. But I do try to get them out once a day, load them in the bike trailer, and go to a park, explore a bit of lakeshore, or do a small hike. The only hikes we have done have involved Daddy for his carrying arms, since mama isn't strong enough to carry two big boys for any amount of time. I have a Boba carrier for one of them on my back, but the other must often be carried as well. Most recently, I bike them to school, over the ridge that lies between our house and the school, then carry Little in the trailer to go pick up Big again three hours later. It isn't much, but my legs feel stronger already, I've lost some weight, and am feeling stronger and healthier than in a long time. It is frustrating to live in such a beautiful, activity friendly place and not be able to use it at will, since B often does not get home and relieve me of childcare duties until after dark to allow me and the dog the chance to go on a solitary poop and sanity walk, but we knew it would be different this time around. We have kids now. Everything is different.

It is the night before this month's chemo. We have to be in Denver at 8 am, which means we need to leave here at 6 am. Little Dr. Daniel is asleep in his dark blue scrubs to save us having to wake him enough to dress him in the morning, Curious George is sitting on the counter all ready to accompany us to the hospital to be Daniel's patient tomorrow. 

I have the dreads. I don't always have them the night before chemo, but tonight I do. Daniel has been irritable and occasionally inconsolable this week, often uncharacteristically weepy. His head has been sweating while I hold and nurse him to sleep. The only time that happens is when he is on steroids, normally. And pre-diagnosis, when his bone marrow was over 90% cancerous cells and his blood was thin and useless. His face often feels cool but sticky, sweaty. Today, his breath smelled strongly like acetone, telling me he is ketonic, like perhaps his liver enzymes are out of whack. I stuffed any food he would eat in him all day, just in case he was ketonic from lack of calories, and it did seem to fade a bit toward evening. He has a chemo rash extra badly this week, his ears and around his mouth especially affected, his ears all swollen and red with what he calls " bug bites", the acne-like sores around his mouth opening up and oozing a bit. This too makes me think perhaps his ANC is unusually low, because that affects wound healing, but tomorrow's bloodwork will tell. He has also been easily exhausted, but he is in the middle of a big life change, plus he started preschool two weeks ago, and has gone five days so far. And almost every day, he tells me he has bug bites on his lower back, or that his lower back hurts. I know this is to be expected when one has a needle shoved between one's vertebrae into ones spinal column every thirty days, but it still makes me angry that he has to feel the effects of his treatment like this. 

I am so incredibly grateful he is finally talking enough to be able to tell me how he feels, where he hurts. I am finally hearing his thoughts and feelings, as well, and this is so rewarding. He tells me without reservation when he is happy or sad, and we sit together and sort out his feelings and what might have caused them. 

It all 

...I believe I fell asleep. I'm actually amazed I can finish a sentence some days, let

...I swear that wasn't on purpose. Just lovely irony. I sat down to finish this post, somebody needed something, and it is now the next day. I am now attempting to write while a singing, dancing purple dinosaur raises my kids, one of whom is sitting in my lap taking random swipes at the keyboard with his feet. 

My mom instinct was spot on again- as in, not so much. Daniel's ANC wasn't low, it was too high, out of the "anti-relapse" range. If it is too high again next month, he will have to have a chemo increase. We do not want that. Chemo increases come with less than ideal side effects. We want to achieve nicely suppressed neutrophils with as low of chemo doses as possible. He did have some elevated numbers on his metabolic panel, but nothing so high as to cause his caregivers concern. I now believe what I was seeing was detox. Since last month was Vincristine only, no spinal tap with Methotrexate in his spinal fluid, detox was probably extra severe, since it had been two months since his last spinal. Two days after he got more chemo he was lethargic and a little pale, but his rash had cleared up. By now, ten days later, his energy is back, his skin is smooth and clear, he is feeling okay. Well. Except this morning. He woke up saying he did not feel well, and his temp is hanging around 99.2. Not much to go on, but I feel like (with my infallible mom instinct) he might be getting sick. Well. And he was exposed to strep the two days ago, by someone who wasn't symptomatic until yesterday. So I am keeping him close, letting him be a couch potato, letting his body fight without introducing new assaults. The internet tells me the incubation period for strep can be five days, so we'll be on house arrest until Thursday.   

...and it is two days later. Turns out, the strep wasn't strep, just a virus. But Daniel is still running a very low grade fever every afternoon, just upper 99's, and being fairly horrible to his little brother, and I'm feeling protective, so home he stays. 

I have an eye twitch. One of those weird little twitches that starts every time you experience an uptick in your stress level. And the exhaustion. I could happily go to bed every night at 7pm and be comatose until 7am, except my kids don't even consider bed until 9, and I am awake 3-4 times a night to give meds, refuse to nurse, allow nursing, replace covers, soothe night terrors. 

I suppose it is the non-medical craziness catching up with me. The move, the stress, the illicit fence building (more on that later). We've had smooth sailing medically. No inpatient admittances or even ER visits (aside from an injury-related CT scan) for nine months now. Which means, dun-da-da-dunnnn! We have successfully kept him well, in spite of his 25%-50% of an immune system, with nary so much as a fever, for nine months. This, my lovelies, is unheard of. Unheard of! In the case of childhood leukemia treatment. Granted, the kid is sucking me dry. He nurses himself to sleep. He nurses all night. He begs to nurse during the nightly five hours he must be NPO to avoid the enzymes in my milk deactivating his oral chemo. He nurses when he wakes up. He nurses away every sad (and a threenager has a lot of sad.) And guess who else wants to nurse every time he sees Daniel nursing? I feel like a dry husk most of the time. I feel strangers judging me for nursing when they are falling apart in public. But (and yes, we are a study of one) the fact remains that breast milk is antibacterial and antiviral, and guess who has not had so much as a fever in nine months? These kids. Neither the one who is on immunosuppressant drugs nor the one whose immune system lacks nary a neutrophil has so much as sniffled in nine months. But me...oh my... I miss the days when I woke up in less pain than I went to sleep in, as I now wake up hardened into a twisted shape almost impossible to break out of due to sleeping contorted in such a way that two little vampires have access to my mammaries without waking me too much. I miss sleep. I miss my patience as I attempt to convince big that little can, in fact, play with toys, eat food, breathe air. I miss adult music, adult Netflix, adult time for things like walking the dog, and the ability to finish a blog post in less that five different-day attempts. 

Motherhood is blessed and beautiful and messy and wretched and smelly and confusing. I swear some days I can actually feel my sanity dying. And I only have two kids. And they aren't as close together as they could be- they are 27 months apart. That 27 months is easy for me to remember, since Daniel was 27 months at diagnosis as well. So I suppose it hasn't exactly been a normal experience, but does anybody have a normal experience? The part that has me puzzled and feeling like a failure is that now that things are easier with Daniel, I am losing the ability to handle life with a toddler and a preschooler. We weathered steroid storms and sh**storms (literally) and deathly fear of losing Daniel to infections and complications of treatment, but now is when I lose it because my husband comes home from work just as I have finally gotten two hysterical boys calmed down enough they are dozing off at bedtime, and the dog barks, and everyone jerks awake, and they are off and running again. Now is when I lose it over them fighting and tussling on my lap as they both nurse, toothily yanking on my nipples as well as on my last nerve. Now is when I have the luxury of being at my wits end because my 17 month old refuses to wear a diaper and hits, and my three year old helps him remove his diaper and hits back. 

I am that mother right now. I am touched out, am often deaf to their crying until it hits a certain pitch because I just don't have the energy to mediate the battle over the toy car the three year old has decided the 17 month old shall not have, and all I want to do, quite honestly, is wean them and let them cry and fight it out. But I won't. Because I fear breastfeeding is the one thing keeping everyone healthy, and the research suggesting leaving a child to cry without responding to those cries has a correlation with future trust issues makes perfect sense to me. 

Here is where we go wrong in our modern attempts to allow children to experience evolutionary norms that have proven themselves over millennia. We have all the advantages of modern life, such as clean water and vaccines to keep rampant disease at bay, saving our children's lives. We have birth control, enabling us to decide when we have reached or slightly exceeded our litter size limit. We have research galore pointing to patient, responsive, available parenting (do not read helicopter parenting into this; I think we both know the difference) being the best gift we can give our children. What we do not all have is close extended family. We do not have other adults to take our children when we start to look a little wild-eyed and smell due to lack of personal hygiene. 

(Attempt #...6? At finishing this post. 11:17 pm, Oct 6. Two sleeping angels, I have a good feeling about this!) 

Parenting has just been...intense, lately. Daniel is going through something. Maybe it's just being 3 and a half. I suspect he is sick of me. I can't blame him. I'm sick of me. I snap at him, then I remember how empty my life could be right now without him and am filled with remorse. I hear myself yelling. When did I start to yell? I am not a yeller. I am a parent who remembers she is the adult here. Right? At night, when Little is no longer crying hysterically over small disappointments, such as being forced to play with the black toy car instead of the blue one, and Big is no longer ripping every toy Little picks up out of his hands, when they are no longer begging to nurse constantly, when they are warm lumps under fleece blankets, tiny bottoms in the air with perfect toes turned toward each other, silken curls and warm pink cheeks, tiny hands clutching tiny toys in their sleep, so innocent, so peaceful, so beautiful, I whisper to them of my remorse for all the days ugliness against their impossibly soft temples and hope they are too young to remember today, and promise them I will do better tomorrow. 

So about the fence... I went into the office one day to ask if I could possibly start a petition, do some community organizing, be a squeaky wheel in the corporate machine that is the mega company that owns this trailer park. I didn't intend to leak, I truly didn't. My face just started to as I was asking, due to all the stress I had been experiencing, realizing I probably should not have gone to all the work of transferring D's IEP, getting him into preschool up here, because I realized what a germ pool preschool is. I mean that wasn't news to me, but dropping him off his first day and hearing all the coughing about did me in. I no longer have the option to take Alex inpatient with us during flu season, and I have no back-up childcare plan for if we get admitted. I was embarrassed, but I got out my story, and how if I was going to have to spend our entire winter in solitary, so to speak, on house arrest, how was I going to do that while also keeping them off the street every time we so much as ventured outside?

I didn't realize the manager of this trailer park is a leukemia mama herself. She fought this beast tooth and nail twenty-some years ago, almost losing her kid four times, and once a cancer mom, always a cancer mom willing to give another cancer mom the shirt off your back because you know exactly what she is going through. She told us to build a fence and leave the rest up to her. We built the fence. Paid money we didn't really have to do it, didn't think twice about it. Knew it was a first world problem, didn't care. The boys have a safe, secure place to play and no longer run out in the street. My life is so much easier. But every time I wonder how she is going to explain to her boss and other envious residents her allowing a fence in a trailer park that stopped allowing new fences to be built a year ago, my eye starts to twitch and I get a stomach ache.  She doesn't deserve this, either. I hope there is no fallout from it. I hope her job and standing is secure enough this will be overlooked. In the meantime, the fence had to be built in a day, lest her boss notice it getting built and freak put, so we had to hire a crew. With real money. No cheaping out on a DIY project as is our usual. So far nobody has broken our windows or keyed our vehicles, so apparently the neighbors are being adults about our special treatment, but I'm still slouching around with my tail between my legs, fearful of their judgement.

In the meantime, I think our lovely, charmed Indian Summer has ended, and with the first snow came reports from the school of students being sent home with fevers, vomiting, diarrhea, and strep. So far the preschool, which is mostly insulated from the rest of the school has only had fevers and sore throats, but I am keeping him home again today. The preschool is fastidious, for our sake, about sterilizing toys and surfaces, isolating possibly symptomatic kids, and calling me if anything is a little "off" about Daniel or any other kid so I can go pick him up, take him home, wash his clothes and scrub him down in the shower. It's all we can do while attempting to give him a normal life, and it has worked for three weeks, but I fear this latest flurry of sickness, in conjunction with the suddenly cold, damp weather and lack of sterilizing sunshine on playground equipment signals the end of our attempt at giving him a normal kid experience for this winter. 

Life is messy and there is no longer any black and white. It seems hard times, or maybe just the process of becoming more emotionally mature and aware, smudge the lines of good and bad, right and wrong, until ones inner landscape is a monochromatic juxtaposition of happy and sad, hopeful and resigned, moral and wrong, weak and strong. Everything has nuance I never realized before. No story is straightforward, no villain is bad, no hero is good. The educated and uneducated both make dumb mistakes and display brilliant genius. Somewhere in there is the lesson that perhaps life defies classification and must be appreciated for exactly what it is, even when we have no idea what that is. I am trying. Mostly I'm trying to take my own advice and live in the moment. Fail if I must, but love and make amends, rebuild bridges, and be the adult.