It took two minutes for the pediatric oncologist to shatter our high. The large tumor found in my daughter was benign and we’d just begun to process our relief and decompress from many nights in the hospital. He stopped us cold. The tumor has a 50/50 chance of recurring, of showing up in other organs, and has a chance of metastisizing as malignant. She had to go through more diagnostic testing. And here I sit, mere hours away from this doctor telling us the results of the latest PET scan. The space between knowing and not knowing.
There have been a lot of spaces like this over the last few weeks. Before this medical drama, I’d been pondering spaces between, mostly from a creative perspective. I’d had trouble settling down to write, often wandering out into the garden to pull weeds or getting distracted by a lit journal. In the past, I’d chide myself for being a typical amateur writer, easily dissuaded from doing the thing which I needed to do in order to be what I wanted to be. Until recently, the spaces between were called procrastination and dilettantism. But I am my own spin master. The space between would hold value.
I decided to lean into it. What was happening between writing sessions? What was happening when my brain unraveled a bit, let down its guard, daydreamed? The answer is obvious to me now – I was writing the next story. Not everything is about writing, but at this particular point in my life, I want it to be. It’s something that keeps me afloat with hope for who I can still become. Or at least it was.
Now the space between is a barren land. Gripped by the worst fear I’ve ever experienced in my life, my brain dare not relax. Daydreams are now nightmares about will readings and empty rooms. There is no inherent value except to keep me at the edge of the cliff. It’s an unsustainable state without there being damage.
I read articles about post-traumatic stress experienced by parents who go through a medical crisis with their child. I know I’m experiencing it. Reliving the moment when the ER doctor said there is a mass in her midsection. Reliving the moment when the surgeon said that there was a 95% chance it was malignant. Unable to sleep well, needing to be in constant motion, waiting for the other shoe to drop. Hyper-vigilance, alert to the slightest sound, standing over her at 2:30am to see if she is breathing, much like I did the first time she slept through the night as a baby.
There are several bird nests in our yard. We watched, as one by one, fluffy robins began 
to fall out of the nest in their first attempts at flight. The mother robin was nearby interrupting her coaxing chirrs with sharp chirps of warning. The father swooping past to ward off predators. We watched baby cardinals being fed in turn by mom and then dad. They built their nest in a bush at eye level alongside our driveway. Despite all the activity, the sound of the garage door, the yard work, the mother forced herself to sit on those eggs, alert but motionless. The space between laying eggs and hatching them and sending fledglings off in the world is one of constant vigilance.
I read about post-traumatic stress not because I wish to avoid it, cure it, tamp it down. I only want to be aware of what is happening to me. I’m a fairly unshakeable sort who is now shaken. I feel a fundamental shift in my mental state and I know, at some point, I’ll need to make choices about who I become because of this shift. It’s early yet, but the future seems more uncertain than ever. Can I find value in this space? If I can’t, it will take years off my life, feeding the fear that has dogged me the older I get – that I will waste time.
When we returned home, after many nights hearing the beeping of monitors, the changing of shifts, the weak moans from the bed, it was apparent that nothing else mattered. And it might not again. It’s hard to care about weeds or workouts or washing. My husband and I have become mother hens, constantly milling about, checking up, never out of earshot. We have whispered conversations about meds and pain and temperature checks, even as our daughter has regained her color, her appetite, and her teenage eye rolls.
I called up friends, went out for walks, even managed to get in a few workouts. But these posts are the extent of my writing. Somehow, I have to get back to writing fiction. A friend from my writing group said that she was sure that this time would prove valuable to my writing and she couldn’t wait to see what I would do. This might seem a mercenary perspective, but it was something that I needed to hear – to be reminded that regardless of outcomes, there will be value in this space between. I just have to be willing to look for it.
Update: The scans came back negative, so onto a monitoring plan. Thanks for the kind wishes and bearing with me as I posted my anxieties. Hopefully, I can get back to writing my usual rambling posts.
I found myself writing in second person over the last week. It’s an unusual POV to pick, but second person puts distance between the reality of life and the compulsive desire to write about it. I was unable to have conversation with people. All words led to I’m so scared and inevitable sobbing. So I tried to find ways to write around the margins of this terrible thing that was my reality, this waiting to see if my beloved child was going to be in the fight of her life or if she got to go home to resume being a teenager, a classical violist, a friend, a classmate. Our girl.
I thought about what other drivers saw on the way back to the hospital. A blotchy-faced middle-aged woman barely driving at the speed limit in her Prius. They couldn’t know that she was barely fending off terror, that she’d spent the previous day waiting through hours of surgery and recovery of her daughter, that she was in shock and despair. How often had I cussed out drivers, thought the worst of them, assumed that they were this or that?
Blurry-eyed, I dragged myself through the hospital cafeteria, I looked around at all the families, some comforting themselves with gentle inside jokes, others looking haggard and unseeing. Out of context, I know that I would have seen them differently, perhaps with a hint of judgment or irritation that they were too noisy or unfriendly or inattentive to what they were doing. When we are out in public, we do not know each others’ stories by appearance, and sometimes even by actions. We have to have the imagination and empathy to extrapolate a story. A kinder story.
better take her to the doctor. There were a couple minor fevers earlier in the week and she’s seemed pretty tired lately. You laugh with her in the car about something silly. The sun is illuminating the day in brilliant greens and blues. You think she just might need some more iron, but other than that, her bags are packed and she’s looking forward to playing her viola with other chamber musicians.
This is my life now. There is nothing else. Everything else is just going through the motions, playacting at writing or housework or social interaction. Shadows of life before. After writing solipsistic essays for many years, I find it difficult to think in terms of “I” at the moment. It’s all “we”, because our little family now moves in the same direction. Shift to the hospital, shift back home, and back to the hospital, like a school of fish streaming in one direction, then the next. All moves coordinated by the next set of labs, the number on the thermometer, the beeping of machines.
The Green Study 