Grandma Sandi is here at the moment, folding my laundry. She drove out from Kansas for two days of baby snuggles. I keep telling her that while folded laundry is nice and all, and she's welcome to keep doing it, she's the only one who bothers. My philosophy is that life is too short to wear matched socks, underwear with crease marks or shirts without wrinkles. Looking wrinkled is just my way of telling the world I have better things to do than to spend my day putting away clean laundry, and they should be just be glad it's clean as evidenced by the wrinkles from lying in a pile on the couch, and that I don't smell as bad as I look. And besides. A mother who looks too put together is just suspect. Not relatable. Clearly has superpowers and therefore will never be able to hang with underachievers like myself, or even upper middle achievers like most other women. This is, naturally, why I have yet to lose those last fifteen pounds Alex left on my hips when he exited in April. I keep it to make my friends feel better about their lesser shortcomings. (And because I like the simplicity of only having to choose between big and bigger yoga pants when I dress myself.) And why my eyebrows often grow down into my eyelids. And why I always have dried milk on my shirt and spit-up on my two pairs of yoga pants. And I let people into my house when it is less- far less- than sparkling. And why my kid eats french fries in the car and I leave the dehydrated ones tucked into his car seat indefinitely. It's hard to make these sacrifices, but I do it for my friends. So they won't feel intimidated by me. So they can even feel a little bit better than me. Because everybody needs to feel superior now and then. And if I can't provide that service for my friends, who will?
I do, however, currently have about twenty jars of soup all packed and ready to go in the pressure canner- grass fed beef vegetable stew, chicken tortilla soup, and gumbo. So there's that. Look at me inching up the achiever spectrum.
Last night, we went to bed at a decent hour, like 9:45 pm, and after Daniel had finally nursed himself to asleep I set my alarm for two hours to give his tummy a chance to empty for his mercaptopurine. The alarm jerked me out of a coma, clawing and panicky, and grabbing at the source of the awful noise, but that was not as unpleasant as getting poor Daniel out of his own coma to take it. We ended up waking the entire house, me wrapped around his thrashing little body, holding his head against my shoulder as I tried to convince him to open his mouth, then swallow, while he fought. The whole time, me shhh-shhhing and trying to speak soothingly to him, reassuring and trying to calm him when the only thing that would actually work to calm him was nursing, while all I really wanted to do was exactly what he was trying to do- fling the syringe across the room. And then, of course, he had to cry himself back to sleep without boob, just my cuddles, which he scorned because I could not/would not give him boob for two more hours while the Mercaptopurine absorbed. So he lay there crying inconsolably until his sobs quieted into deep breathing again, and I lay there with a giant engorged boob leaking all over, and the one thing we both needed, we couldn't do. Because cancer. Finally at 4 am, I tried to gently wake him to help me out by nursing, but he was in too much of a fog to wake up. I was soaked in milk, so I got up and pumped a little- just eight ounces- out of "his" boob to relieve some pressure so I could sleep. Then at 4:30, Bobby got up to go to work, so I got back up as well to take him to his truck eight miles away. By the time I got back, grandma had moved to the bed, taking up residence in my spot between two half-waking babies, so I climbed into B's side and grandma, Daniel, Alex and I finished out the night in varying degrees of snuggle. Such is sleep in our house these days. Fluid. Multigenerational. Organic. Sometimes indecent.
Indecent as in, I awoke in the hospital the other morning to sunlight and a nurse changing Daniel's overflowing diaper. I was lying on my back with my arm flung out beside me, Alex asleep on my arm, the neck of my shirt pulled down, one boob out and staring the nurse in the face as she bent over us. I felt so incredibly classy in that moment. There is just something about waking up from sleeping flat on your back in the presence of strangers, drool running down your cheek, eyes unfocused in the brightness, breath whistling through several big dried boogers in your nose thanks to the hospital air that makes the Sahara Desert seem like Seattle, while flashing your son's caregivers with funbags that are just not quite so much fun after two full term pregnancies and lactating for the last 30 months straight that just puts your whole life into perspective. To quote the male nurse I awoke to fishing around in the dark one night under my sleeping bottom looking for Daniel's IV tubing, "We really should know each other's first names before we get to this point." Words to live by. I feel like this is a statement that sums up most of my life these days.
This last Methotrexate infusion knocked Daniel on his bottom, nausea-wise. His zofran is not really keeping ahead of it. I tried zantac twice, but he barfed it back up immediately both times. He has become genuinely terrified to go to the bathroom, crying and clamping his hand over his mouth when he pees, the dark yellow, strong smelling pee of a dehydrated little boy wafting past his face and making him retch. He cries and heaves when I change his poopy pants, too. And just the motion of sitting up in bed yesterday morning was cause for vomiting. He wants to nurse, but refuses to swallow. He puts his lips on my boobs, but with his mouth shut. The familiar position of nursing is comforting to him without needing to taste or swallow anything. He needs to be peeing at least one milliliter per kilo per hour, if he pees less, he will need to go in for IV fluids. Today he has peed 200 ml in 13 hours, and he weighs 13 kilos. This means he has managed, even with his nausea and mouth sores, to drink exactly 31 milliliters more than the absolute minimum required to stay out of the hospital. That's like the equivalent of one large swallow of water. His eyes are starting to look legitimately...chemo-ey. That particular shade of bruised brown creating circles under them, down onto his cheeks. Hs face looks pale and tired. Here he is, sleeping with his little yellow pan close to him, lest he need to barf...
One more high dose Methotrexate infusion. We can do this. He can. ...I hope. Every one gets worse in it's way. The first one, that rash. The second, that fever. The third, this nausea. I hope it's not a new one next time that's worse. It hurts to see him so miserable.
I really think I am a better person for the experience of this interesting little stop in cancerland. More peaceable. More patient. Quieter. Sadder, but with more depth of emotion and empathy. It isn't that these things weren't there before, I just didn't give them as much airtime. This experience has me less reluctant to feel. And I feel...more. More determined to live in the moment, every moment. More aware that with every breath, everything can change. More heart, more love to go around. But please don't make me a liar by suggesting this is the reason my baby got cancer. Because I just can't. I might not respond to such a suggestion with any of these listed qualities. There is no way I can be okay living in a world, or with a belief system, or subscribing to a philosophy that suggests an innocent child is merely a pawn in a scheme of "it all works out for the best". Who's best? Certainly not the child's. To suggest such a thing is to suggest a child's suffering is justified. No, I mostly just live in a world where there are consequences. Consequences of our human imperfection. Of random errors and mutations in genetic code. Of incomplete DNA replication. Of even lifestyle choices that may damage DNA and disrupt the successful replication of cells. But some master plan arranging cruel circumstances involving sweet, undeserving toddlers to achieve some future goal? Just no.
Of course, to claim personal betterment as a result of less than ideal circumstances is a very human thing to do. We as humans tend to maintain our baseline. This is our psychology. People who want to be happy tend to be happy with the road taken and vilify the road not taken. Winning the lottery doesn't make someone a happier person years after the fact, just generally less stressed out about the lack of money, specifically. We make a life and find happiness with the person we did marry, and eventually convince ourselves we couldn't have possibly been happy with the one we didn't. Whatever our level of contentment before inconvenient or tragic circumstances, it tends to be much the same afterwards in moment-to-moment life, given an undetermined amount of time and coping. Granted, when one is missing an important person that once enriched their life, there will always be a giamt chunk of happiness missing. But choosing cheer (however modified by grief) in moments that call for it does not change. Previously happy people who have become handicapped usually say it has made them a better person. Previously pessimistic people who experience incredibly good luck find ways to still be unhappy. As long as our delicate balance of chemicals in the brain plays along and keeps us from clinical depression, statistically we will eventually return to the outlook we've always had. Or so the studies say. So perhaps, when I say I like who I am becoming over who I was before, I am simply being human enough to attach meaning to senseless, random life.
Simone's devastated, grieving mama made a comment on Facebook yesterday that has made me reflect a little bit. She said (and I paraphrase) perhaps it was having a sick baby, but her patience with Simone was limitless. Never did she lose her temper or snap at her. Their relationship was one of unbroken trust. (She went on to say it was now that she felt she had let her down, when she could not save her, which, while heart-wrenching, is exactly how I imagine myself feeling after this time of being intensely needed, should we be that one in ten who won't walk away from this.) And I thought, this is how it has been since Daniel was diagnosed. I attempted to be aware of the emotional undercurrents making him act out before his diagnosis, and did my best to understand them and react accordingly instead of taking the easy way out by addressing the effects of the emotions instead of their root, but now I would not dream of being angry with him. Not even in the middle of his steroids when he did nothing but scream for fifteen hours straight. I didn't even take out my frustration on people who weren't him. I have just lost my desire to lash out, for the most part. Well. Until lately, when I made the in-hindsight dubious decision to go back on birth control. Now I save my snark and mads for Bobby. Which I'm not proud of, just cannot tell a lie... We're both trying to tough out this first month or two of me trying to rise above, in spite of being a crazy person, to see if it gets better. If not, life's too short to spend it being a mostly well-balanced person trapped inside a crazy head. Better the baby box be a ticking time bomb than me be one.
Twice, before he was diagnosed, I lost my calm with Daniel. Both times were during a particularly unstable time for me, thanks to pregnancy hormones, stress of relocation and Bobby's insane schedule, and both times were in the middle of the night when he would wake up crying, go out to the dining room, and sit in his chair wanting eggs. So, thankful at least he was wanting to eat, I scrambled him an egg. He took one look at the plate, grabbed it, and flung it, eggs, fork, and all, across the room. Even shattered the plate once. And just as quickly, I grabbed his little hand and smacked it. Both times, he stopped crying in shock, then, whimpering, saying "uh-oh!" he held his hand to my mouth for kisses to make it better, unable to comprehend that I had intentionally caused him pain. And in my sudden crushing guilt over my betrayal, both times I told him over and over I was sorry, gathered him against me and we sat in the recliner in the dark kissing away his owies, physical and emotional, letting the storm pass, until he fell asleep.
Now, in hindsight, I know he felt weak, tired and achy, his blood supply diminishing every day, his appetite lacking, and was as irrationally angry and irritable as I was while incubating a tiny human inside me. Now I know what was going on. Now I want to tell every parent I see punishing their kid instead of sitting down and truly listening to them how I was goaded, twice, into violence, and how this still haunts me, because both times, I only betrayed and confused my beautiful little person by simultaneously being the person who caused him pain and protected him. Had I continued doing this, by now he would have realized I was not hurting him accidentally, and he would have had to try to understand why. I know we all have to find our own way with our own children and base our reactions on their personalities, and what I am witnessing in an ugly moment is not always representative of what actually is the norm. So I don't judge by first impressions. But I do know that losing it with my babies is something I just don't do anymore. And a lot of it is because, having looked behind the door that is the posibility of ever losing one of them, I don't want to have a single regret. Whether my time with them ends with them loading up a vehicle and driving away from me headed for college, marriage, career, or just bumbling around finding their own way, or whether it ends before that, unexpectedly and tragically, the daily knowledge that this moment is the only one we are guaranteed makes me a better person than any amount of resolve ever could. I hope I never lose this perspective.
We are often complimented at the hospital, clinics, and labs we frequent on my "well-disciplined" child. I hear often from the staff that they can tell immediately which children receive discipline at home and which ones get a "cancer pass". Or simply have parents who don't discipline. I shrug it off because I don't really have a child who demands a lot of discipline, so I will never know if it is nature, nurture, or if maybe the terribleness is simply delayed with him. What I do know is if we never tried to understand, if we assumed every meltdown was simply him deciding to be naughty and confrontational, we would miss so many opportunities to understand and show him love, but gain so many opportunities to foster hurt and betrayal. The same desire to understand applies to our sleeping arrangement. How many times does he awake in the night in sudden, childish terror to find us close, breathe a sigh of relief and fall back asleep? How many of those raw, vulnerable moments would I miss with him in his own room, door closed, not allowed to come out? Or, as in the case of my own childhood memories, paralyzed in the dark, too terrified of the monster under the bed to be able to call out, let alone run down the hall to my parent's bed? I need him close to me as much as he needs me close to him right now. To spend eight hours of every twenty four away from him squeezes a band of anxiety around my heart. The time is coming when he will insist on his independance. It is already starting, him pushing me away from him so he can go to sleep in his own bed, pushed against ours. Someday, I will nurse him to sleep for the last time. Someday, he will sleep in our bed for the last time. Someday, he won't be there for me to love him back to sleep after he wakes up confused and afraid. I won't feel his panicked breathing calm with only the weight of my hand on his back. And someday, Bobby and I will have our bed, our room, our space, eventually even our entire house to ourselves. We can wait.
My friend who's baby has a diagnosis that is unquestionably terminal says there is one thing you cannot do when you know your time with them is limited. You simply cannot leave anything on the table. You make absolutely sure, as much as is in your power, that you do. You go. You experience. Because one day, and you never when, it will end and you will be left only regretting the love you didn't offer, the experiences you didn't give them, the happiness you didn't feel. (Again, I paraphrase.) And to this, I ask myself, but isn't this life? Childhood is, by it's very nature, fleeting. Life doesn't come with guarantees or do-overs. Even those of us with healthy babies aren't guaranteed tomorrow with them. Live. Go. Do. Laugh. Love like it could all end tomorrow.
That's not too dark, is it? In this strange new world, it doesn't feel dark. It feels like the opposite of dark. It feels like the only way to arm ones self against the dark.
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