I deep cleaned the boys' room yesterday, a perilous undertaking. It was cluttered with the small treasures they had amassed over the summer: a long goose tail feather from the time at the duck pond with Oma; a rock from the top of Stone Mountain; spent glow sticks from the night drive on the road trip; piles of empty mussel shells collected from the bottom of Sweetwater Creek; two sad, low-hanging mylar balloons hovered ominously in the closet; a surprisingly large collection of detached lego hands carefully arranged in a circle under Finnly's bed; among many other mementos and curious arrangements.
I saw only trash where they saw treasures, and judging by the damp swimming towels--which Finnly calls "water blankets"--unceremoniously wadded under their beds, perhaps a growing health hazard. As I turned hastily to toss out their helter-skelter collections so as not to be caught (I am not a novice at the spy craft required for mothering small boys), they found me out. We stood there for a moment, the two of them facing me in their doorway, my arms piled carelessly high with their keepsakes. They both furrowed their eyebrows the same way their father does when something is amiss.
"Mommy," Connor said suspiciously, "What are you doing with ALL of our favorite things?"
"Yeah," Finnly added, like he was Connor's muscle, "What you doin' wif our STUFF?"
There was wailing, gnashing of teeth, a small slander of my character, a cursory tribunal over the contested value of each object, and some tense negotiations. Finally, we catalogued each item in a mason jar labeled, "Summer 2016," and stuffed the damp swimming towels in the washer on the sanitize setting.
I remembered a passage from The Happiness Project by Gretchen Rubin, which I read in the little pockets of time I found between making travel plans and traveling this summer. In her self-help memoir, she spends a whole year studying philosophies and pursuing practices to boost her happiness. She writes in her November chapter titled, "Keep a Contented Heart," about the need to find an area of refuge.
When Arthur Llewelyn Davies, the father of the boys who inspired Peter Pan, was recovering from an operation that removed his cheekbone and part of the roof of his mouth, he wrote a note to J. M. Barrie.
"Among the things I think about
Michael going to school
Porthgwarra and S's blue dress
Kirkby view across valley...
Peter answering chaff
Nicholas in the garden
These phrases mean nothing to an outsider, but for him, they were areas of refuge.
Their room and their collections were areas of refuge for the boys, their storehouse of happy memories. I am grateful they fought to have me respect their mess and it's meaning.
Every Friday night, as a course of Connor's treatment for his juvenile arthritis, I give him a subcutaneous injection of an immunosuppressant called methotrexate. We've been doing this all summer, so long I've lost count of the weeks. We could be maintaining this Friday night ritual for months or years, depending on the course of his disease. Before I began giving him his injections, I researched side effects: stomach upset, vomiting, fatigue, low-grade fever, birth defects, potential liver damage. The benefits outweigh the risks, though for many weeks, I felt as if I was poisoning my son. In my research, I came across an alarming study of some kids who began throwing up at the sight of the dark yellow liquid in the syringe, a sign of their psychological distress. I also read about the power of mindfulness and positive thought in the face of physical pain, how it has the potential to change the entire perceived experience.
So we pick our areas of refuge before our Friday pokes, before Connor gets more blood drawn for labs, before he goes in for another MRI, we choose his happy memory strategically. On Friday nights, we talk about the small details of it while I count down from three, and grasping the back of his soft arm, push hard enough so the syringe needle pierces his skin.
"3-2-1-poke, tell me about the first time Jojo had Italian ice. What flavor did you have?"
"3-2-1-poke, how many fireflies you caught with Tim that last night at Oma's house?"
"3-2-1-poke, what was your favorite part of our hike this week?"
These are small areas of refuge for both of us, to distract us from the trauma of treatment.
I have become diligent, like the boys, in collecting small, happy remembrances, letting them build up so they clutter my mind. I have my own list at the ready when I wake in the night in fear of this disease and what it means for my family, for Connor's future, when despair for the world settles in on me, when my own mind becomes uninhabitable, I begin to recite things I've committed to memory for just such an occasion: favorite poems, a few beloved Psalms, and a growing list of happy memories. In them I take refuge.