Hello and welcome back! It's been far too long, I know. Life hasn't stopped, but I haven't been stopping to record it lately. It's been coming at me just a little too fast, like I'm perpetually running up a Lego-strewn "down" escalator. Last time I checked, it was sometime in February, and now it is past mid-April. That's a lot of water, I mean Legos, under the bri- I mean feet.
I am haunted by a refrain, ricocheting through my thoughts as I ricochet through my world. "Am I enjoying this enough? Will I remember this? Will this stay with me?"
Little brother is just ridiculous lately. Two is such a ridiculously beautiful, golden age, he talks a mile a minute and is so innocently sweet with big wet kisses, tight hugs, and proclamations of his devotion- "you aw my best friend, mommy. I wuv you sooo much." Of course, the next moment he melts down over something terribly important like the color of his sippy cup. And the next he is demonstrating his best songs and dances for me. And the next, inconsolable because Big took his toy. And the next, stranded on the kitchen countertop. And the next, dumping his orange juice on the floor so he can drive toy cars in the mess. My life is basically a whirlwind of adoration and exhaustion and laughter and the need to take just one moment to poop by myself. And maybe, occasionally, taking the dog for a walk while Bobby experiences the small humans alone.
Big brother is developing a much larger emotional landscape and paints a new picture of it every day. He's violently angry. No, resentful. No, feeling the need to tightly control his surroundings. No, floundering in despair. No, confrontational. No, remorseful. No, excited. No, demandingly impatient. My happy, tranquil boy, the boy who took everything in stride and walked to the beat of everyone else's drums without fighting for two years now, is suddenly, finally beating his own drum and demanding we all dance feverishly to it. He cries easily when challenged, and it takes so much time, time I have to remind myself that I have, that nothing is more important, to sit with him, talk about things with him, calm him, and love him through a hundred upheavals a day. He is losing the sweetness and compliance he used to have, shedding his happy toddler enthusiasm along with his baby fat. I struggle with questions of whether his emotional instability is because he has had chemo breaching his blood/brain barrier and roaring through his fragile developing brain for two years now, or if he is just four. At night, when he has fought himself into deep, exhausted sleep, I curl my body around his and whisper to him how much I love him, and how he could never get so difficult I will stop fighting for him. This isn't to say he doesn't have his moments, moments of sweetness and caring and empathy that surprises me. But as he becomes a person, he becomes complicated, and he challenges me in the most genius ways. Not to mention the questions. He is making up for having been non-verbal for so long with probably a thousand questions a day. When we finally throw up our hands and ask, "Why are you asking so many questions?!" He responds with, "Hmmmm...that's a good question!" Or sometimes, "I don't know...Why do I?"
Intensity. That's why I haven't stopped to write. Every emotion is so intense and must be addressed immediately. Every need is imperative. Every thought must be heard and responded to promptly and appropriately.
And joy. Joy has permeated our house, the sort of joy that comes from being surrounded by innocence.
How can I hold on to it? These two are changing in front of my eyes, every day, reminding me of the transience of building an identity around and finding joy primarily in them. I suppose this is the emotional process that prompts some to keep having more children, but the notion does not seem attractive to me. It isn't the mere fact that they are children that lights me up, it is the fact that they are my Big and my Little. The thought of adding more intensity does not appeal to me when I realize how many of the beautiful, simple moments I have missed, have not borne witness to, because the intensity clouds my view. How many moments have had something amazing happen in them while I was too busy to notice? I want to store it all, every giggle, every squeal, every mangled sentence and awkward tower of blocks they construct. As they mature, I am so excited about traveling their roads with them- we have so many trails, literal and not, to explore together. Their bodies are growing strong, legs are stretching out, and soon we will be having amazing outdoor adventures together, where I will share with them all my favorite things; the damp, sun-warmed dirt and pine scented breeze on my favorite trails, the brief feeling of weightlessness underfoot when cresting a hill on bike or skis. I want so badly to share the world with them in their most formative years before I am replaced by peers and budding individuality. For four years now, I have been more or less housebound, watching my body soften, my face grow pale, dark circles form under my eyes, while I have changed inside as well- my heart has also softened, my interests have also paled, and my circles of friends have grown smaller.
It isn't that I want my old self back, it's that I long to take my new self with its little tow headed satellites out into the great, wide world with me and show them all the beautiful things. So no. For me, another child is not the answer. To keep repeating and extending this time of hopeful toddler innocence is not the answer. But because time moves in a linear path, we are always leaving something behind, always choosing between staying put and moving forward, always losing one thing to gain another.
In my case, Little's head full of flaxen curls represents it all. I press kisses into them, run my fingers through them, and my heart develops a thousand cracks when I realize I will lose him. Because I will. That sweet little head pressed into my shoulder, it will someday lift from my shoulder for the last time. I could have a dozen more babies turn into toddlers with silken curls, but those curls will soon stop tickling my cheek just the same, and while I am frozen in time as a progression of curly heads rest on my shoulder, I will miss the intricacies and patterns of sunlight and shadows on the trails preschoolers and preteens and teenagers must walk, trails I can't wait to watch them travel, to walk just a little behind them, the better to observe their reactions to the hard and painful and beautiful things.
I know some who read this will think it sounds like I intend to hover. But this is why I am struggling with questions of identity lately. I am not solely a mother. It feels like it, but I know, and the knowledge is so sweetly excruciating, that I am raising them for the express purpose of achieving an end goal, and that end goal is them finding healthy independence apart from me. When they happily, confidently walk away from me, I will know I have succeeded as a mother. This knowledge is why, between now and then, I know how imperative it is that I am first a mother, but close second, an adult person who walks my own path, that path chosen while my own mother stood tearful, her own primary identity, by necessity, shattered by her child's independence.
More than ever, with only a little over a year left in Daniel's treatment, I live in two worlds. The happy one is the one in which his cancer does not exist. We are already striding away from this experience, leaving it behind us even while we are still in it, with long steps, our heads high, with no thought of any remote possibility that cancer can take any more from us than it already has.
But the underworld is still there, the shadows and dread seeping from the earth when we least expect it. Sometimes I am skipping along in the sunshine and without warning, a crack opens and I tumble in, and until I can climb back out, I cower in the shadows, down there in the foul air, breathing the toxic, creeping fumes. It happens when I hear of a friend or acquaintance parenting a child through a relapse and I'm reminded that just as we were once parents who didn't even consider the possibility of our child having cancer, we are now parents who don't even consider the possibility of a relapse. While I'm down there, I let the fears roll over me and am choked by the suffocating imagination of what it would be like. In that moment, there is nothing. It is then I realize our joy also comes from something beyond, and far more dangerous, than hope. It comes from belief. It comes from being not merely hopeful, but rather sure cancer is strictly in our past. It is then I realize we have no safety net. We would fall just as hard, if not harder, the second time.
Our strength is in choosing to be oblivious, and that is a perilous source.
I am on a worldwide forum of parents also dealing with this disease, and a few themes of discussion are recurrent. Is this symptom/that rash/this pain normal, they ask again and again. How do you walk the line between having a life and keeping your child healthy? How do you stay calm when everything sends you back to the moment you most thought you would lose your child? How do you manage family stress when you cannot be an adequate parent to your other kids, or an adequate mate to your spouse, because your first responsibility is to support your child fighting cancer? And every once in a while someone will start a thread that quickly devolves into "things you shouldn't say to someone with cancer", and "horrible things people have said to me".
I always read through these with bemusement. Some are truly horrifying, like, "when is your child expected to die?" and "your child wouldn't have cancer if you hadn't (given them sugar, vaccinated them, drank water from copper pipes, lived where you did, fed them red food coloring, treated them with vitamins instead of chemo, etc, etc, blah, blah, blah)." Some are more benign, like "thoughts and prayers" and no further contact. Some are well intentioned but tiresome, like the many suggestions a cancer parent receives to try essential oils, cannabis, and elimination diets in addition to chemo, which is far more complicated than someone unfamiliar with their treatment protocols might expect, or to try those things instead of chemo, which puts a parent in a terrible position. And some are just mildly discomforting. I find it interesting how many people fighting huge battles take issue with the compliments meant to lift them up.
"You're so strong. If I were in your shoes, I'd just die."
It doesn't seem like this would be a hard one to hear. But oddly, it is. Many similar threads on said forum got me to thinking about why it is that nobody wants to be called strong. After all, it is a positive trait. So why does the word make someone fighting big battles want to fall apart?
The way I see it, we all have people in our lives who have a harder road than we do, and we admire the hell out of them for traveling it with grace, while at the same time experiencing a rush of gratitude every time we are reminded of their circumstances, thankful that so much sacrifice and pain has not yet been, and may never be required of us. I feel the way about parents who have lost their tiny warriors that "normal" moms feel about me when they catch a glimpse of what childhood cancer is like- a mix of awe, admiration, discomfort, pity (yes), and sadness. I tell them the ways their situation reminds me to live and love in this moment, the moment I have with my kids, that this joy we now intentionally find in each moment together is a beautiful legacy their child has given to mine, and it comes full circle when other moms tell me how our very existence in their lives makes them realize how fortunate they are for their kids' health that would otherwise have been taken for granted.
I think it is just hard to be told we are "strong" by someone who dismisses the trait as inherent instead of something we have chosen to fight the biggest battles of our life to become, have clawed our way into, and fight to hang on to every single day. I'd much rather hear, "You and your kid are badasses who make me realize how much crap humans are capable of surviving, and also, here's some chocolate because there is no way you are as okay as you seem. I hope if I ever have to be as badass as you are being right now I can make it look as easy as you do." Which is essentially what people are saying when they say "you're so strong" and I recognize the sentiment. But not everybody fighting a big battle does, especially when it is stated in a manner made even more awkward by the fear of being improper and the discomfort of imagining ones self in suckier shoes than ones own.
At any rate, things are good. Daniel is exhausted, but he has also shot up almost an inch in the last two months. His weight has not gone up, so he is looking more lanky by the day. The layer of little boy padding over his port is gone, and for the first time I am starting to see not only the outline of the reservoir bubble under his skin, but the outline of the tube under his skin traveling from his port up toward his left clavicle. His hair seems thinner, as well, which can happen during maintenance chemo, although hair loss after frontline treatment is fairly uncommon. He is pretty rashy at the moment, especially his face, but again, not uncommon. The sun, sunblock, and his chemo work together to really inflame his skin. We went to Kansas over the weekend and he may have brought back a tummy bug, because he spent the night vomiting. It breaks my heart that he is so used to vomiting that he requires no supervision. Just a bowl and a quiet corner to watch a movie, so he can puke in peace when he needs to. He is challenging and tough and amazing and unlike the adults in his life, hasn't learned to lie- when he seems okay, he really is okay.
'Til next time, dear ones. Hopefully it won't be so long next time.
