Can I have sleepy medicine today? Is my port a part of my skeleton? When did you get your port out, mommy? Can I watch a video of someone getting their port out?
D asked me these questions on the drive to Denver the other day, as he sat in the backseat, freshly washed hair perfectly combed back “like superman”. They all said something about his experience. He loves certain parts of treatment, like his propofol naps, which doesn’t give me the same warm fuzzies that it clearly gives him. He doesn’t remember life before treatment. He doesn’t realize his experience is unique. He has a steel stomach and prefers truth over comfortable oblivion.
When we first saw him post-op, the hard knob under the skin on his chest for the last three and a half years replaced by a sutured incision and steri-strips, sitting up in bed woozy but awake, I thought I would take a moment to feel relieved and jubilant, but we were stressed out and in a hurry because we had booked another appointment across town the same afternoon. I had my wisdom teeth removed (I just cant even with having another mouthful of stitches down my gums and up my cheeks, but it’s done now...except for the bruising and the leaking and the perforated sinus and the nasal mists and the gastric side effects of the antibiotics and soft foods), then spent the night sitting awake on the couch because I had taken the first day’s worth of a steroid taper all at the same time and was buzzing, and everything hurt and was bleeding, and I was a bit woozy myself, so I didn’t truly “see” him until the next day. It was then I sat and watched him watching a movie beside me on the couch, watched his expressions and emotions change with input, saw comprehension in his delight over funny scenes, fear over stressful ones, the corners of his mouth quiver over the sad ones.
And then I finally started to feel things. The fear I thought I would feel over relapse once chemo ended isn’t there, possibly because I have already cycled through so many end-of-treatment freakouts I actually managed to cross that bridge before I got to it, or at least haven’t worked myself back around to it yet. I guess what I feel is just...white hot heartbreak over how absolutely beautiful it all is. How innocent he still is. How unwritten his future is. All of our futures are. How smooth his forehead is, how trusting his eyes. How childish he still is and how much he is still mine.
My heart had been jumping in my chest lately. No, like literally. The stress and medication and steroids and diet after having five teeth extracted have kicked off the arrhythmia I usually manage to keep controlled by a careful diet and stress management. It makes me feel fragile. Mortal. Even though it isn’t a dangerous one, it carries just enough of a hint of threat that it makes me stop and acknowledge my own heartbeat, instead of having it quietly just pumping away in the background. It reminds me we are all only a missed beat away from devastating loss. It makes me realize that for today, and today only, everything is completely perfect. Tomorrow, it may not be, but instead of fear, or rather because of fear, I realize none of us has the luxury of living in tomorrow’s crisis when we have such an immediate demand to soak up today’s perfection.
Cancer was an ugly messenger that brought us the priceless gift of realizing just how much we could lose tomorrow. How much we will lose tomorrow. Tomorrow, little boys will be bigger. We’ll all be a day closer to when this all ends.
We recently returned the floor futons we had borrowed, when optimistically thinking our little boys might wish to sleep in their own beds. They aren’t in the slightest bit interested, and to be honest, neither are we. Their absence feels like lost time. We remain a family of four that only needs one bed. There is time, when they are ready. They leave our sides so willingly during the day, so eager to explore and wander and learn about the world, that at night, when eons of nighttime predators outside ancient circles of firelight whisper to our collective instincts, we gather them close, whisper in their sleeping ears how loved they are, promise to do our best to protect them as long as they need us to, tell them how our life is better with them in it. Sometimes they are not quite asleep, so they murmur sleepy acknowledgement, place soft palms on our faces, and sigh as they slip into dreams. It’s just all so unbelievably precious. So heart-shatteringly beautiful.
And then, as the night quiets, the guilt sets in as I silently count kids, like beads on a rosary. The kids we’ve met who fought harder, and had so much determination, and hope, whose parents are just trying to find their way through life without them. I owe it to them to remember that D is alive, that his mere presence is everything, that every ambivalent moment or minute annoyance is simply affirmation of the beauty of life. The fact that so many died for the data and protocol that saved his life just crushes me under the sheer weight of all the tears shed for them. I feel so selfish wrapping my arms around D’s warm, sleeping body, pulling him against me, curling around him, burying my face in his tangled curls. I feel like I am somehow throwing those other parents under the bus, the ones out in the cold, the ones lying curled each night around only the gaping holes in their chests, to lie there myself and be so whole and happy. I hear their faltering words as they try to explain things that don’t have language, things that were never meant to be voiced, and try to keep moving, having lost parts of themselves that will never be replaced. I feel my suddenly tenuous grasp on joy start to weaken, the horrible, icy fingers of fear start to wrap around my heart, nighttime dreads seizing their opportunity, convincing me that literally tomorrow, it will end. Feelings of impending doom, in clinical speak, shot through with sad tenderness. Classic sign of anxiety and depression, I know. I’m not in denial. I tell my healthcare providers about these midnight dreads, but also tell them that when the sun rises, they dissipate. In spite of me being convinced in the middle of the night I will have to cancel all my plans for the next day, never drive anywhere ever again, never let my kids out of my house, and just generally call off life, with the sun comes joy and just enough of the illusion of invincibility to catapult me though the day while the nocturnal dreads sleep.
I don’t know that there is much of a takeaway there. Odds are better than maybe that I’m a complete mess, but joy right now is flaming as hot as the dreads are icy, and maybe what is normal isn’t as important as what is bearable. At least for now. Everyone to whom the I tell these things seems concerned, but also reminds me of the current facts of my life the last few years- job changes and financial insecurity and three different houses. Kid with cancer. Nearly life-changing injury in the past year. Three weeks away from yet another complete life change. Pressure to be ready to leave this house, which is safe and homey and filled with things that define my life, inanimate objects that were with me through everything, that I am touching for the last time, then giving away. Someone who has lived 35 years safely in the middle of several thousand miles of solid land, three weeks away from leaving the mainland with her family and their four suitcases to go live on an island surrounded by thousands of miles of water. All things I honestly don’t feel that traumatized by or particularly worried over when I dwell on them one by one, but the aggregate does sort of paint an unstable picture, I suppose.
I know my things are just things. The dress I wore at my best friend’s funeral. The lamp that shed a soft glow over my babies as I sat nursing them. The furniture we inherited from condo remodels over the years, and the furniture we splurged on buying for ourselves. The snow clothes that were the barrier between us and sub-zero high altitude winter days. The “Love Your Melon” hats from the childhood cancer charity of the same name, that I won’t have occasion to feel cute in, living in year-round summer. The expensive winter boots I finally allowed myself to spend real money on, and then wondered how I’d lived my life without them. It is a bit surreal, in the sense that it is usually someone else that goes through a loved ones life, disperses their stuff, smells their clothes, gives away their shoes and casserole pans and throws away their old, shapeless bras. But I’m doing this while I still have a lot of life left to live, and it’s weird. It’s making me look at my life through a lens of objectivity, and it’s nostalgic and uncomfortable and feels a little shameful, realizing how much stuff I’ve accumulated, all my justifications for each item, and how they smack of first world privilege. I have helped do this for others, after they weren’t here to have an opinion on what happens to their stuff. I feel a little funerary doing it for myself, as well. It is a burial ritual for all the ways I have presented myself to the world, even as it makes room to become more. Each item that goes into the “keep” pile is there for a very specific reason. If not practical, it holds emotional ties I simply can’t yet bring myself to sever. I have placed the hospital wristbands our family wore on D’s port-removal day in a ziplock bag with the card I kept in my purse for three and a half years with instructions for local emergency room visits- instructions for providers on how to access his port, what size of needle to use, how to draw cultures and screen for sepsis. I can throw away old ink pens, stray bobby pins, picture hanger hooks and holey wool socks lacking their mates, but not a torn-up hospital wristband. There are items I am surprised I still have, that have survived more moves than is justified considering how little emotion they provoke for me now, when once they defined me. I suppose the items I keep speak to my current chosen identity, which also feels like an uncomfortable mirror to look in, considering what they are- things that hint of me and mine as victim as well as victor. I don’t know how to be normal anymore, how to live a mundane life without crisis or fear. I don’t know how to identify if not as a warrior mom. New identities will sneak up on me, I am sure, and slowly take the place of my current one, and before I know it, I will wonder why I kept chemo calendars and wristbands, but right now, I want to move away from fear and stress and just take a few things for granted once in a while, but I don’t quite know how to.
Deconstructing the sum of my existence has me feeling exactly as fleeting, as transient, as easily blown away on the wind as we all truly are, but never let ourselves feel. I grew up so rooted, I thought roots were essential to happiness. Maybe they are. I know there are always those weeks after a move to a new place where everything feels wrong and backwards and upside down, and I am weepy because nothing is familiar and I really just need my mom. And then I make my first friend, and start to find my people, cook good food, find my ugly pants in a box marked “misc”, sit on new hills under the same sunsets, stick my toes into new water, and slowly, things turn aright again.
In a sense, I am somewhat fortunate to have very few family connections to have to strain by a move farther away from them. The ones I have are priceless to me, and even those, I struggle with feeling as though I am throwing onto a “store indefinitely” pile, along with the select items that would be a bigger pain to replace if/when we return than it is to commandeer a corner of my parent’s attic. A stand mixer, a box of snow clothes, a pile of skis, and my own mother’s heart in a rubbermaid tote. Just kidding. But I’m not kidding when I say that the circumstances of my life have left me with a deep, annoying conviction that I am responsible for the happiness of others, and distance does not lend itself to micromanaging relationships. It’s nobody’s fault, at least not any fault that anyone could have foreseen and avoided as those priorities were being rooted in my subconscious, it’s just that lovely baggage we all carry with us and isn’t quite as easy to decide what to do with as a lead crystal serving bowl you got for your wedding and are sitting on the floor holding, trying to decide if it is worth keeping against the day you move back and suddenly become a hostess type. I keep telling myself that this is my life, that I have exactly one of them, and that I am capable of having it all...that nothing besides me, not distance or five hours difference in time zones or my own busyness gets to decide the quality of my friendship and relationship offerings, and I have enough love, and am resourceful enough, I can make sure I am able to be just as unhealthily codependent from a distance as I am in person.
We have three weeks here yet. It feels like it’s already over for us in Colorado, because B is working extremely long hours, trying to get entirely too many remodel contracts fulfilled in the time between the day after Labor Dday, when the busy summer rental season flatlined and the condos became available for repairs, and November 1, which is our self-imposed deadline. We move out of this house September 28, give the keys to the new owners, take our “keep” pile to Kansas, then drive back to Denver to fly out October 1 on Daniel’s Make-a-Wish adventure. We return October 8, at which point the boys and I will drive to Kansas to stay with my parents for the next three weeks while B finds a bed in Summit County and finishes his work here, then hit the road for Los Angeles, where we will put our vehicle on a boat, get on a plane, and most likely suddenly realize, once the mainland disappears from under us and we see for ourselves how much water there is between our family and our new life, that we are making a huge mistake.
The Make-a-Wish is Disney. I honestly thought that if we ever had a kid who got to do a Make-a-Wish, that it would be unique. It would truly be an adventure. That we were not so mundane as to have a kid who would choose Orlando resort hell as his one big goal in life. I tried to suggest other things, although deep down, I knew they were sort of my own wishes...but still wanted to verify that they were not more attractive to him than some germ-infested rides in a theme park, jostling for places in long lines with other sweaty humans and overstimulated kids. We talked about an Amtrak pass, the ability to ride a train as far as we wanted and see as many places as it took us, or a flight to somewhere he could “study” marine life. His exact wish was, “I want to travel all over the world and have adventures and do experiments”, which was immediately translated by Make-a-Wish into Epcot, and it took about thirty seconds into the Make-a-Wish interview for me to realize something. Non-Disney wishes are a pain, especially with the child being only five years old. Make-a-Wish simply does not have to pay a lot of money to send a family to Disney for a week, allowing them to save the big bucks for the older kids, the sicker kids, the more imaginative kids. And the more I thought about it, the more I realized that my kid doesn’t have to be unique unless he wants to be. He just needs to be a kid. If they can send us to Orlando, they can use donated air miles to get us there. They can reserve a villa for us at Give Kids the World, a non-profit, donation-supported resort where nobody pays to stay, but is only available to kids with life-threatening conditions. The parks donate passes. I don’t know if rental cars are donated, but it’s likely they aren’t full-price. There is already a well-oiled machine that exists for the sole purpose of sending warrior kids to Disney, and to choose something “unique”, just because I think we are better than to spend a once-in-a-lifetime wish on plastic castles and cartoon characters, is some pretty self-absorbed insanity. Although my kid has no frame of reference for theme parks or Disney World, he will definitely not think he is better than plastic consumerism and overstimulating rides with sticky handles, and this is about him. I have scoped out planetariums while there, and have a big goal of showing him the rings on Saturn and distant nebulas through a real telescope, to blow his mind. The resort itself is like a mini theme park, it seems, with the goal being that for one week, the little warriors who stay there, who have heard so much “no”, only hear “yes”. It will be an amazing, special time, and he asked me the other day when were are “moving to Disneyworld.”
If I seem a bit snooty, keep in mind I grew up without TV. Disney was an abstract concept to me. My formative years were not filled with Disney’s influence. While my peers were watching and pretending to be Ariel or Aurora, I was learning to read and devouring the Little House books, and pretending to be a pioneer on a couple thousand acres of grassland. My heroes and alter-egos in hours of pretend play were Laura Ingalls and Amelia Earhart and Jo March and a brief, intense fling as Joan of Arc, after Mark Twain introduced her to me, and a confusing lineup of dramatic Victorian heroines I found in a stash of books in the basement left there by previous inhabitants. So I don’t get the Disney obsession. I just don’t. I’m not saying I am a better person for having spent my childhood obsessed with literary heroines instead of cartoon ones, and I love that cartoon heroines inspire my sons, because gender was a huge factor in who inspired me as a kid and so far, my sons seem to be just as enamored with girl heroes as boy ones. But I just don’t get it.
Bobby gets it. I am obsessed and completely delighted by garden eels, and drag my boys to the Tropical Discovery building every time we use our zoo pass in Denver, because they must learn to love the garden eels as I do, and be as delighted by them popping up out of the sand of their aquarium to sway in the current like fat, contented blades of grass. They are everything I’m not, everything I’ve always wondered what it would be to live like, perfectly happy, just popping up to watch the ocean colors swirl around, sway, and enjoy life. They might be my spirit animal. But apparently The Little Mermaid gave tiny Bobby nightmares, or specifically the garden eels did, and now they give him the creeps. I have yet to watch The Little Mermaid. Maybe his hangup over garden eels will make more sense to someone who has. But it does make me think about how early phobias and influences stay with us. And it makes me wonder what will be my boys’ “stuff” when they’re grown- what thing we are innocently doing now, allowing them to witness, that will create freakout echos as adults when they are reminded of them. Garden eels. C’mon. I love my boys’ dad, but he can’t take this from us. Garden eels for lyfe.