Thursday morning. Molly and I have taken our walk, circling the campus twice, looking for squirrels. We see not one. It’s a cold morning. “They’re in their nests, girl. Let’s go home.”
Molly is napping now in the backseat of the Subaru, parked in front of the coffee shop. I’ve returned to my writing haunt, showing up on the page in a room filled with familiar smells, not-too-loud music and not-too-loud chatter, alone in the company of others. A raspberry scone drizzled in white chocolate—a rare indulgence—waits on a plate alongside a hot, foamy chai. Five men have gathered at a round table on the patio, their red and black coffee cups resting on the wrought iron. A large, mangy dog sleeps at the feet of the middle-aged man with a high forehead and shoulder-length hair. Collapsed, folded umbrellas hold memories of hot summer days, the trees above completely naked, creating long stick-figure shadows on the sun-drenched concrete. I’ve tried writing these last months but can’t sit still long enough to finish a sentence. May today be different.
Four months ago. I carry two cardboard boxes into Ali’s bathroom, open the top drawer of her dresser and begin to pack. Socks, pajamas, camisoles. In the far corner I uncover a baby t-shirt with a yellow rubber ducky painted on the front, a red ribbon tied in a bow around its neck. I’m in a movie. The heartbeat quickens, the breath grows shallow. I start to cry. What kind of mother moves her special needs daughter into a home she and her husband do not occupy.
We close on the ranch across the street the day after Thanksgiving, one year ago. Contractor and architect are on board before Christmas, a remarkably competent team who not only grasp the logistics and accommodations of wheelchair living but embrace the significance of this particular young woman leaving home, moving out, living on her own. They recognize the potential for a shot at an authentic life, on her terms. They listen, give us ideas, advocate, modify and fine tune. By February, we have a plan.
On weekends Tony and our friend Johnny demolish the main floor and the basement, ripping out 60-year-old lath plaster, tile and plumbing fixtures. They sling sledgehammers skyward and smash the ceiling, their faces covered in masks with elongated snouts and buggy eye shields to shut out the insulation that falls more than a foot deep onto the floor. Friends help. We fill bucket after bucket with dusty, crumbled debris and haul them to the dumpster in the front yard. Between February and July, a semi-truck as out of place in the neighborhood as the porta-potty in the front yard, will come and go six times with an industrial-size dumpster on its flatbed trailer. Three silver maples, a blue spruce, a handful of shrubs, a metal carport, a rotting planter and the concrete sidewalk—all are destroyed in the name of renovation. In their place go new walls and flooring, upstairs and down, a new heating system, wiring and plumbing, a new staircase to the basement, a new roof, a different entrance, sidewalk and carport. The place is slowly transformed.
During the night of June 3rd—the home nearly completed and ready for paint—a copper thief armed with a pair of wire cutters breaks into the back door. The electrician arrives early that morning, hears a sound he doesn’t recognize and follows it down the basement steps. Water is spewing from the water-supply pipe for the toilet, not yet installed. Water has been gushing through the night, splashing the drywall, soaking the shower tile and the new vanity, staining the solid fir door and flooding the entire basement, destroying the baseboards that were trimmed and nailed into place less than a week earlier. The electrician calls the contractor. My phone rings at 7:15.
“Rebecca, it’s John,” his voice serious, calm, deeper than usual. “I’m sorry to have to tell you this but… we have a situation.”
Appliance and equipment cords, copper wires and tubing have been severed at their base. Cables, ladders and extension cords are gone. We surmise that the thief noticed the water-supply pipe in his search for the mechanical room. He meant to snap the pipe completely but instead cracked it. The geyser sent him running. I imagine him cussing, imagine him scrambling up the steps and out the back door, kicking down the gate on his way to the street, to the car, to the recycle for cash, to the meth lab.
“He’ll be lucky to get thirty dollars for that wire,” the cop tells us, shaking his head. He takes notes. I call the insurance agent and take photos. Water mitigators show up at noon, the adjuster two hours later. A detective calls. More questions, more reporting. No one tells me the one thing I want to hear: your daughter will be safe.
I’m standing in Ali’s bedroom, a few days after the move. The iris bliss walls I painted in July are bare.
“How about we bring over some of Katy’s photographs for these walls,” I say. Her head jerks to the right. No. Her fingers start typing.
“This is a new time in my life. I don’t want any art from my old room.”
She looks at me, a tinge of fear rising in her cheeks. She’s standing up to the most powerful person in any child’s life: her parent.
“No? Really?” I’m disappointed, a little surprised. “But wouldn’t the photos make this feel more like home?”
She shakes her head. “Over time,” she types. “I’ll find art over time.” I try again a few months later but she doesn’t budge. “Leave it alone,” she tells me, tenaciously holding her ground. The playing field has shifted. We’re on her turf.
A few weeks pass. Not one request to spend the night in her old room. No showing up for dinner at the last minute or asking me to run an errand for her. My phone beeps one afternoon in mid-August. It’s a text from Ali.
Can I come over? I need a hug and $20.
She knows I’m putty in her one good hand.
I look up from the laptop and out to the patio, roll a stiff neck from side to side. The men at the round table have left. I sip my cold chai and watch a young man in a motorized wheelchair drive past the coffee shop. A cushion supports his head, a backpack hangs behind the chair. He crosses the street at the corner, a male attendant walking behind him. On their way to Cheesman Park, I think, or maybe to the Greek place for lunch. Ali is on campus at this moment. She’ll meet Sarah, her roommate, at a pre-arranged spot after class, or they will have texted with a new plan. I know neither the time nor the meeting place. I don’t know if Ali leaves the classroom alone or with a friend, or if someone helps her with the poncho. This hyper-vigilant mother mind—trained and conditioned over more than two decades—wonders if the need to know would exist if my daughter were a walking, talking twenty-something college co-ed. I remind myself to trust. This is about independence. Hers and mine.
Sunday afternoon. I haven’t seen or heard from Ali in three days. Before she moved out, I promised I wouldn’t peak in the front window, grill her about eating vegetables or show up without texting or calling first. I need a fix. I send a text.
Can I come say hi for a minute?
No, showering and goin out tonight
Good for you. Where you goin?
No more lessons required. Ali Cat has learned to fly.
Hours later, restless in bed, I roll onto my side and feel the immensity of her childhood in my entire being. Joy and heartache woven around each other in thread strong as rope, impenetrable to wire cutters and hacksaws, braided with diligence, will power, support from others, selflessness and love, always the love—sometimes the only tree left standing after stamina and determination have been felled. To allow independence to a young woman whose life knows so much dependence requires saying yes when saying no would be so much easier: yes to a renovation that has wiped out my savings, yes to the caring people who continue to step forward, yes to believing that Independent Living for the Disabled is even possible, and then letting go and allowing life to unfold—what she hangs on her walls, what she eats, when she goes to bed, who she spends time with—all of it, as she chooses.
In the car, 5 pm. A call from Ali. She’s put the phone on speaker so her hand is free to type.
“Sarah is sick and I don’t want to get it.”
“Come for dinner and hang at our house,” I suggest. “I’d love that.”
“That’s what I was thinking.”
We’re on the same page. How easy this is.
It’s old times again, she keeping me company while I cook, her telling stories and sampling the food. Four of us share crab cakes that evening, Ali in her old spot at the head of the table, Molly sprawled next to her in front of the fireplace.
Around nine, Ali and I head back to her house. Dried leaves collected in the street’s gutter crunch under the tires of the wheelchair. I help with her bedtime routine—washing face, brushing teeth, changing into pajamas, charging the equipment and getting into bed. The television remote, iPhone and a book are within reach. She shows me she can operate the roller switch on the wall behind her when she’s ready for lights out.
I sit on the bed, slide my hand under the purple comforter and rub her bottom in the slow, circular motion she has known since the night I first held her, 24 years ago this month, in the international terminal at O’Hare. The tightness in her body begins to relax. I adjust the pillow and move her head to the middle, brushing the loose strands of hair away from her face. Do the caretakers do these things, I wonder? Do they matter to anyone but me?
Kisses, a hug, one last snuggle at her neck and I say goodbye. I step outside, lock the door, walk down the sloping sidewalk and across the street to home. At the front door I turn and look one last time in her direction. The prayer flags hang quietly on this still night, the moon hangs low in the November sky. I catch her scent on the collar of my jacket and step inside, beaming.