Mostly we are out of the hospital world. Mostly, we wake up in our own house and have breakfast with our own family. Mostly, Cali goes to Miss Meggie’s second grade classroom at Bay View School and eats lunch with her classmates. Like everyone else, she rushes to beat the crowds on Friday Popcorn Day.
True, some things are different. Cali and I still have an arsenal of medications to ingest at least twice daily. But in our household, taking meds has become as common place as brushing teeth.
“Did you remember your pills, Mom?” my four-year-olds chime in unison every morning when I sit down to breakfast. They love to catch me forgetting (which is most of the time.)
Then there is Cali’s chronic foot pain. Despite our attempts to placate her discomfort with drugs, ice packs, and supportive shoes, walking is still just plain hard. She limps energetically around school, where she won’t be caught dead using a wheelchair or walker. But each day at recess she makes a beeline for the library, where she can rest her feet and zone out in front of a book or computer screen.
Walking to and from school with the neighborhood gang is usually out of the question. And I – I, who once gathered for fun in Justin Herman Plaza to chant “Critical mass, don’t use gas!” and snarl Friday rush-hour traffic; I, who commuted from Davenport to UCSC by bike daily, come rain or wind; I, who once did all my grocery shopping by human-powered trailer even with toddlers – I have become a proud master of the triple-black-diamond Bay View School parking lot situation.
Now some schools have an automobile pick-up plan, with an organized line of parents in clean, boxy cars patiently waiting to collect their backpacked offspring. I know because I attended such a school. We waited in neat rows organized by grade, while the principal herself called students forward by first name. Any driver who was remotely suspicious (dirty windows, unfamiliar face, different last name) was pulled aside into quarentine to have their credentials vigilantly reviewed. Sometimes we sat there on the sidewalk for as long as twenty minutes, waiting for our carpool drivers to arrive. I didn’t care. I was always happily playing hand-games with my friends or trading pencils. We even got to wait inside the classroom on hot or rainy days.
I never considered my mom’s dedication as she waited in those long “carpool” lines. She wisely brought her book to read, arriving early to wisely secure her position. However, in retrospect, at least there was a method to the madness. At least the girl with braces on her legs didn’t have to walk a quarter mile to get to her car. At least all of the children were safe and accounted for.
But this is not Bay View Elementary. Bay View is completely Santa Cruz, a free world, a free-for-all world, a world with few observed rules, at least in the parking lots.
Bay View Elementary has over 600 students and a staff of more than sixty adults. In addition, the campus houses the district’s special needs preschool and a neighborhood parent cooperative preschool. Yet for all these students, faculty and the care providers who collect them every day (read grandparents, parents on disability, injured staff and students, disabled students) there are only a measly four handicap spaces – two in the front parking lot and two in the back. I personally know one parent who just had surgery, a teacher who has trouble walking, a kindergartener in a wheelchair, and my daughter. Check! That makes four. Yet I am sure there are many more who justly qualify for handicap parking. (Not to mention the poachers, who don’t.)
Needless to say, trying to get one of these four coveted spots is an art. To make matters worse, the school bus, who only serves the special needs preschool (such is the district budget), parks in such a way to block two of the four spaces precisely at pick-up time. If I arrive early, I may be able to nab one of these prime spots, but I risk being trapped by the bus. If I arrive late, theses two spots are rendered useless, even if they are empty. The handicapped bus is competing with the handicapped drivers. (Go figure.)
Nevertheless, each afternoon I load my twin four-year-olds into the car, put on my best combat face and depart my house in my dirty minivan a good twenty minutes early, armed with my critical handicapped parking pass. (Mind you, it is not a twenty-minute drive; I live a mere four blocks from campus.) We amble slowly down Bay Street, taking extra precautions at the three-way crosswalk, where our patriotic neon-clad crossing-guard bedecks the intersection with orange cones and American flags, while a police car sits in waiting, ready to ticket.
Several feet past the busy intersection, we roll towards the first parking lot entrance. It’s tricky, but in the three seconds available, I have learned to perform a quick visual survey while simultaneously avoiding unpredictable school-age pedestrians. Has the bus arrived? Are either of the two handicap spaces free? Are there any other vacancies? How is the traffic?
Turning into this awkward triangular lot prematurely can be a death sentence because it takes upwards of five minutes to get out of the lot, wasting precious seconds in the back lot. However, scoring a spot in this desirable real estate is worth it. The front lot is by far the closest point-to-point walk from Cali’s classroom, and Cali grins broadly when I reveal my parking success.
But more likely than not, the front lot is unavailable, and I move on. The back lot is bigger, which suggests a higher probability of vacancy, but this is an illusion; the majority of the spaces are reserved for staff. Still, if I arrive early enough, one of the remaining two handicapped spaces is usually unoccupied. However, finessing my long minivan into one of these centrally located spaces can be precarious, between the line of double-parked cars severely infringing on my turning radius (despite the big red signs that say “No Stopping, No Waiting”) and the parents loitering outside their cars on the handicap turf itself, chatting as if the blue lines indicate some sort of town plaza.
I purposefully hang my red handicapped pass from my rearview mirror and put on my sweetest smile as I slowly nudge into the remaining space. The loitering parents glare at me as if I am trying to run them over, which is not quite right; I am trying to move them over. I imagine the horrible things they are thinking about me. Why is she being so aggressive? She’s not handicapped! Who does she thing she is taking advantage of that handicapped pass?
I bolster myself with images of my daughter crying in the middle of the night, her ankles swollen to the size if softballs because she walked too much that day. I think of the pounds of Tylenol I am buying from CVS to counteract her daily pain and the liter of Gabepentin I deliver to the school nurse biweekly to counter the nerve damage she suffers day in and day out. “I am doing this for Cali,” I tell myself, and I push past their (imagined) sneers with a righteous smile and tall shoulders, dragging my motley four-year-olds through the mess.
But some days I don’t capture one of the prized spots. For example, take what happened one exceptionally hot day last week.
At our first crossing-guard pass, my twins demanded I roll down the windows. “Hi, Jerry!” they shouted. They were rewarded with his iconic jovial laugh, “Hi girls!” he waved.
Only minutes later, after unsuccessfully trolling both lots, we passed the guard station again. “Hi, Jerry!” they shouted once more, thrilled to have another chance to yell out the window. He waved again. I wondered what he was thinking.
We were finally able to park about a block away on a neighborhood street. As we traversed the crosswalk, this time on foot, my twins did not miss the opportunity to greet Jerry yet again. “Hello!” he said cheerfully. “Nice to see you out of your car!” I half-smiled. Too hard to explain, I thought, especially with the elementary kids amassing by the second at the corner to cross. He had a job to do.
We found Cali outside her classroom, pacing the length of the coat rack, searching urgently for me. The moment she saw me, she heaved her backpack into my arms. “Where did you go?” she asked with relief. “Let’s go!” She put her head down, flapped her arms, and started speed-limping towards the back parking lot gate.
“Wait, Cali!” I called, as gently as I could. “It was so crowded today. We had to park on the street.”
“No!” she shouted. Tears burst from her eyes. Her swollen left ankle was bulging out of her sparkly supportive high-top.
Okay, think fast.
“I know!” I said, trying to sound fun. “Why don’t you be a big girl babysitter and wait in the shade with Summer and Faith, while I go back and get the car to pick you all up?”
Cali rolled her eyes. Summer said, “No!” Faith countered, “Sure!” (This interaction is the story of my life right now.)
In the end, Summer and I walked back to get the car, while Cali and Faith waited on a shady bench near the front parking lot within the school gate. Summer was thrilled to get Jerry all to herself as we walked by his corner on foot to retrieve our car (fourth pass), and again, when we drove by moments later to get Cali and Faith (fifth pass).
“Mom, quick, put the window down!” she ordered. “Hi, Jerry!” she called powerfully. He kindly waved.
As soon as we turned into the congested triangular lot, Cali barged out the school gate with no regard for cars backing out of their spaces, with no regard for her little sister Faith, who wisely stayed behind on the bench. This, I reminded myself, is why I insist on meeting Cali at her classroom. This is why I don’t have her wait unsupervised in the back parking lot, as other car-bound parents trust their children to do safely. I have found Sotos Syndrome lowers Cali’s inhibition with people and cars alike.
Not knowing what else to do, I parked in a red no-stopping zone, completely boxing in the special needs school bus. The bus driver shook her head in scorn. I understood. I would shake my head, too, I thought. Suddenly, the headlines flashed in my imagination: “Self-absorbed mother loses control of her unwieldily daughter in a school parking lot and then parks illegally in front of a school bus, blocking disabled preschoolers from getting home.” It sounded pretty bad.
Suddenly, I knew what I needed. I needed a T-shirt that said in large, highly visible block letters, “GIVE ME A BREAK! MY KID HAS CANCER!” I wouldn’t even add the second line, “Give me a break. I just survived cancer.” Or the third line (in parenthesis) “Give me a break. I have twin four-year-olds.” Or the footnote, “Give me a break. My daughter also has Sotos Syndrome.”
Instead, I smiled (again) and helped Cali into the front seat as fast as possible. Next I retrieved Faith, praising her for waiting. I quickly backed away from the bus just as the line of special needs preschoolers arrived. However, we waited more than five minutes for a chance to turn right onto Bay Street, now clogged with darting kids, distracted parent drivers, racing college students, and gangs of middle schoolers on skateboards surfing the sidewalks. Hey, there goes Reef!
***
I kept telling everyone – Cali’s teachers, my parents, our friends – that we were working closely with our doctor to find the right cocktail of painkillers. I assured them in a month or so we would have a solution for her pain. I truly believed Cali would return to her former state of mobility during this eighteen-month-long maintenance phase of cancer treatment. I was under the flawed illusion that our doctors’ palette of antidotes was deep and wide. How naive I was.
Yesterday, when we went for Cali’s monthly chemo injection, her oncologist leveled with me. We had reached the maximum dose of Gabepentin, their go-to drug for neuropathic pain. The narcotics we tried were seemingly ineffective, and their side-effects were not practical for longterm use. The only recommendations she could offer were the things we were already doing – elevating her feet when they started to swell, icing her ankles, wearing compression socks, and the universal, only semi-effective panacea, Tylenol.
“This is just a time we have to get through,” her doctor said in a practiced even tone. (It was obviously not her first time giving this speech.) “And hopefully we will never have to look back.” I swallowed a hard lump in my throat.
Cali, who sat on the hospital bed next to us, didn’t seem fazed. She had just learned how to reserve library books online, and she was thrilled. It was nearly as good as shopping. Don’t let anyone tell you otherwise: Retail therapy is real.
So we will continue with her limited-walking, lots-of-screen-time menu. We will try to go swimming for exercise, even as winter is fast approaching and the pool deck is getting cold and slick. We will keep showering Cali with meds three times a day, hoping her liver survives and the cancer does not. We will keep battling the parking lot scene. As her doctor hinted, it could be a lot worse.
***
When we finally managed to turn right onto Bay Street and passed Jerry for the sixth time, everyone stuck their hands out the windows and shouted a chorus finale, “Hi, Jerry!” Bless him. He just laughed and waved. I tried not to imagine what he thought of us. Forty-five minutes after our take-off, I pulled back into our driveway. I had completed the mission. I had driven four blocks to collect my disabled daughter and returned home, safe and sound. Everyday I count my small victories, even if they take six passes, and hope, eventually, they add up to a big win.
Jenny and Cali at Stanford 