I was a crab nurse. I thought I knew what surviving with crab was about. Then my 4-year-old son, Brennan, got leukemia.
“Two months is the norm,” his oncologist said that fateful January day, describing however agelong it usually takes to diagnose leukemia successful kids. But I’m not the “normal” parent, I chided myself astatine 2 a.m., arsenic I tossed connected the crunchy vinyl sofa successful his infirmary room. I had been a crab nurse, researcher and pedagogue for 15 years. I should person seen the signs.
To beryllium fair, the symptoms didn’t outcry “leukemia.” They seldom do. And I wasn’t a diagnostician. I had a Ph.D. successful nursing, and my rubric was “Dr.,” but I cared for and offered interventions to patients with crab after diagnosis, to assistance them get done their experience. Even so, I felt liable for missing my son’s symptoms.
The limb pains started astatine Halloween. Cloaked arsenic a ghost, Brennan sat rocking connected 2 legs of the room chair, waving his arms arsenic helium talked to Grandma connected the telephone astir the archetypal container of Halloween candy helium was aged capable to remember. He didn’t archer her astir the limb pains that had flickered connected and disconnected passim the day, truthful possibly they weren’t truthful bad.
Then came the fevers, and connected immoderate days, the crisp abdominal symptom astir his belly button, some ever gone aft 12 hours. It was casual to disregard symptoms that went away. By Christmas, the purple velvet robe helium wore, arsenic the King carrying frankincense to babe Jesus successful the preschool reenactment, dwarfed his rail-thin body. Even his grin was crooked successful the picture. I started to worry. His pediatrician could find thing wrong.
We expected this to beryllium the past Christmas with my father, truthful we drove to my household location 2 hours away, wherever Brennan curled into a fetal presumption each time to assuage the pain. That evening, helium insisted connected trying retired his caller crystal skates, a coveted Christmas gift. He fell, got up, and fell again, implicit and over, until helium threw up his hands and shouted, “I can’t bash this anymore!” We didn’t cognize past that his hemoglobin was fractional of what it should person been, and determination wasn’t capable oxygen to provender his muscles.
Back location successful the caller year, we resumed our routines ― until 1 morning, erstwhile his manus shook similar an aged man’s arsenic helium showed maine his Lego figure. He scrunched his brow, averted his eyes and silently, swiftly pulled the artifact backmost and tucked it into the pouch of his sweatpants. Neither of america said a word. I privation that I had swooped him up successful my arms, held him adjacent and asked him however helium was feeling. Instead, I gave him a quick, reassuring hug and acceptable disconnected for work. Our nanny paged maine astatine noon, concerned. “Make maine an appointment,” I said, relieved to beryllium taking action.
Brennan’s leukemia took 2 months and 9 days to advancement to the constituent wherever it could beryllium detected successful a regular humor test. This didn’t impact his prognosis. But waiting 1 much time mightiness have, and it would person enactment him successful a higher hazard category, requiring adjacent much assertive treatment.
Within six days, acute lymphoblastic leukemia was confirmed by bony marrow biopsy. We enrolled Brennan successful a objective proceedings with 2,000 different children, a cardinal enactment port-a-cath was surgically placed to inject chemotherapy, and helium started induction therapy, the archetypal signifier of what would beryllium 38 months of treatment.
Although I worked mostly successful big oncology, I knew what to expect regarding attraction options, broadside effects and however to navigate the wellness attraction system. But I had nary grooming arsenic a crab mom. I felt it was my work to advocator for and usher my family, yet I felt susceptible similar each different genitor who fears losing their child. I couldn’t foretell oregon power oregon adjacent program for the future, and I couldn’t support my lad from the wounded of having to spell done 3 years of crab treatment.
While Brennan drew pictures to process and stock his feelings, I buried mine. I flew into action, advocating for him and overseeing his care. It’s what I knew. It conscionable seemed truthful overmuch easier to beryllium the caregiver than the mother. I had thing to do.
The archetypal time successful the hospital, helium drew a location with a smiling fig huddled unsocial successful the attic. Outside, a large, bluish assemblage reached betwixt reddish spears jutting from the thick, achromatic roof. “It’s a birdhouse,” helium told me. “There is simply a small yellowish vertebrate inside. There is simply a informing to enactment away.”
Two days aboriginal helium added lights and toys outside. “To look beauteous for Mom,” helium said. His small yellowish vertebrate inactive hovered successful the attic, splattered with reddish dots, signifying each the pokes it had endured. “The model is the lone mode in,” Brennan whispered successful my ear, giving him immoderate imagined power successful his caller world.
In that archetypal twelvemonth of aggravated treatment, I collected a portfolio of his pictures. He drew his bones with a bosom and brain, truthful they would consciousness emotion and cognize however to “make the close kinds of cells.” He outlined a fig successful achromatic and purple, showcasing his ain choler bursting to escape, and helium gave the Headless Horseman a candle “to assistance him find his way.” By summer, helium drew a flower, lasting consecutive and gangly amid the rainfall and swirls astir it. Over the year, my lad recovered courageousness and strength, contempt the invasive, fatiguing treatments and the chaos successful his young life.
Over time, we recovered a caller normal. We accepted the uncertainty and the unpredictability; we looked for joy, and created fun. When Brennan was astir 8, helium completed his treatment, and we tossed the chemo blanky — our information against relapse — and went astir reclaiming childhood. But the years of managing his care, watching for symptoms, readying for each foreseeable event, questioning treatments, investigating options and making pugnacious decisions — each portion subduing the loss, worry, anxiousness and fearfulness of losing my lad — took a toll. I was truthful engaged doing, I didn’t instrumentality clip to feel. I discovered that emotions whitethorn hide, but they don’t disappear.
A decennary aft the attraction ended, I had a imagination successful which Brennan died. Friends of his without faces handed maine a horse, a dog, a basketball, a football. All stuffed. All white. All memories. I didn’t privation them. I didn’t judge them. But I took them. My hands, similar robots, dropped each 1 onto a heap connected the achromatic painted ledge of the bay window. I turned backmost to instrumentality the adjacent gift, arsenic if the bushed of moving backmost and distant would support maine alive. The adjacent time I saw his assemblage successful a coffin successful a unreality connected apical of the hill.
“He’s a survivor!” I screamed into the void. It was arsenic if the memories had weaseled their mode into my cells, lurking successful my DNA and regenerating insidiously. My lad was a puerility crab survivor, one of 500,000 successful the United States. And yet I remained hypervigilant. Why couldn’t I laic these fears to rest?
Whatever we look — cancer, pandemic, decease oregon immoderate different situation — determination tin beryllium a temptation to hide our emotions to debar feeling the discomfort successful the infinitesimal (for immoderate reason). If we bash this, we tin fell those feelings from our awareness, but not from our subconscious. Emotions encode themselves successful the brain’s limbic system, wherever motivation, semipermanent representation and the consciousness of odor reside. The feelings resurface erstwhile triggered by a memory, an odor oregon a caller related event. Ultimately, it takes much vigor to suppress and power emotions than it does to conscionable consciousness them successful the moment.
When my imagination woke maine up, my lad was scheduled for a regular tonsillectomy. On the 15th day of his leukemia diagnosis, I sat unsocial successful the muted surgical waiting country and stared astatine a achromatic bosom successful the abstract representation connected the wall. Fears blurred into one. Memories flooded back, and a torrent of tears caught up with time.
It was clip to look my fears of losing my lad — to consciousness them, marque consciousness of them and past fto them go. But how?
Some radical talk. I started writing. I wrote successful the pages of journals, connected my computer, connected notes scattered present and there. And past I wrote a memoir to marque consciousness of each the scattered thoughts — and feelings. Writing down my thoughts allowed my feelings to amusement up connected the page, abstracted from my body. Once they had an identity, my cognitive caput could marque consciousness of them, analyse them and find ways to woody with them.
Writing was my archetypal measurement into awareness. Expressive writing, pioneered by the societal scientist James Pennebaker, is simply a therapeutic method of penning astir an acquisition to observe affectional meaning and summation perspective. Writing required patience, effort, clip and fortitude, but I felt driven to recognize and marque consciousness of events truthful I could merchandise the clasp they had connected my psyche. It was harmless now. The hazard of relapse was down us.
Still, it was hard. I had to recreate, relive and process each those feelings I’d avoided for the involvement of getting through. I learned to beryllium gentle with myself, to forgive myself, to grant the information that I was a ma with feelings. (Kristin Neff calls this “self-compassion.”) In the process of looking back, of reliving the events surrounding my son’s leukemia, I learned to look my fears, fto spell of my expectations for myself — and the guilt astatine not recognizing his symptoms — and beryllium contiguous successful the moment, the 1 I was surviving now. Forgetting doesn’t heal; remembering does.
Twenty-five years to the week aft his diagnosis, my son, present six and a fractional feet tall, sat adjacent to maine astatine a section indie bookstore for my archetypal publication signing of “Standing astatine Water’s Edge: A Cancer Nurse, Her Four-Year-Old Son and the Shifting Tides of Leukemia.” Brennan told the assemblage his takeaway from our story: No substance however prepared you deliberation you are, you tin ne'er beryllium prepared emotionally. Knowledge unsocial won’t get you through.
There is nary grooming to beryllium a crab mom. I had to larn to unrecorded from my bosom arsenic good arsenic my head.
Janice Post-White is simply a crab nurse, researcher, writer and parent of a puerility crab survivor. Her memoir, “Standing astatine Water’s Edge: A Cancer Nurse, Her Four-Year-Old Son and the Shifting Tides of Leukemia,” explores her idiosyncratic and nonrecreational insights connected survivorship, resilience and healing, and what facing decease teaches america astir surviving life. Visit her astatine JanicePostWhite.com oregon @jpostwhite connected Twitter.