ST. PETERSBURG — Colleen Quinn wakes up at 6:30 a.m. and gets herself ready as if for a job, because this is a job. She puts on her mascara and swallows her vitamins and is sometimes still finishing her yogurt as she starts getting her daughter ready for class at Eckerd College.
Before she became 22-year-old Sydney’s Personal Campus Assistant, Emotional Support Animal, note-taker, chauffeur and nurse, Colleen, 52, did waxes and prom makeup, in love with the artistry of shaping eyebrows. She knew Sydney, then in high school in Massachusetts, was in the capable hands of her "school mom," the state-provided aide who helped switch out textbooks and pick up dropped pencils. Sydney’s muscular dystrophy makes her arms too weak to raise, and her body too weak to stand.
After high school, though, there’s no more school mom for a student like Sydney Hart, not if you can’t afford a full-time caregiver. Even if that student, with her 4.5 GPA, has never considered not going to college.
"So," her mom says, "I became everything."
• • •
The Eckerd dorms were too small, and it was hard to find a wheelchair friendly place to live. But eventually Colleen and Sydney moved into a stucco apartment under a big oak tree close to campus.
The first year, their place had just a futon and a beanbag, in the style of "Early American Yard Sale," Colleen says.
Colleen had asked Eckerd officials if she could come assist Sydney, and they didn’t bat an eyelash. While Sydney can type notes and eat pad thai and text, she couldn’t do college without an aide. After high school, support services dwindle, leaving students with extended test time and maybe a note-taker. Sydney needed more. There were lecture hall doors without automatic openers. Bikes stranded on ramps. Japanese workbooks stuck in her backpack. Campus sprinklers that showered her electric wheelchair.
"I’m her logistics manager," Colleen says. "She’s the brain. I’m the body."
Through the personal care attendant program in Massachusetts, Colleen gets an hourly wage to look after Sydney, who’s technically her employer. Those hours don’t come close to the reality, but faced with the cost of hiring someone else, it felt like the only way. It helps that Sydney has scholarships.
Hurdles aside, Sydney and Colleen were charmed by the little, laid-back school on the water, where professors share pitchers and root beer floats with students. Colleen baked cookies for Sydney’s classmates. Groundskeepers started calling her "Mom." She flipped Sydney’s flashcards as midnight came and went. She helped her daughter get set up in her psychology classes and took notes in cursive. "Is this even a word?" Sydney often asked.
By that first winter break, Colleen told her clients she wasn’t coming back to Massachusetts for a while.
• • •
Sydney was about 5 years old when she started falling down. Colleen’s strong-willed tornado of a daughter, who played lacrosse and did ballet, who could trash a room in 30 seconds or less, struggled to climb stairs.
"Come on, Sydney, stop messing around," Colleen said.
It took Boston Children’s Hospital a few months to figure out she had limb-girdle muscular dystrophy.
Colleen told Sydney that she could do more with her brain, anyway. By third grade Sydney was in a wheelchair. Colleen learned to chop ice off of the school bus ramp.
Sydney itched to leave Merrimac. She didn’t want to be one of her "small town, small mind" peers who got stuck there. Still, some family members weren’t so sure she should leave.
Colleen said, "It’s you and me, kid."
As Sydney applied to prestigious colleges, Eckerd sent her postcards of students in hammocks on the campus’s white sand beach. The brochures intrigued Colleen, who’d read that Eckerd was like an Ivy League school on the Gulf. She encouraged Sydney to apply.
When Sydney was waitlisted elsewhere, and when one college told Sydney its campus had too many stairs for her, Eckerd became the last college standing. Sydney could stay home, searching for a Plan B, or move to Florida with her mom.
If she didn’t like it there, they decided, they’d leave.
• • •
At first, Colleen tried to blend in, like a regular aide. One professor figured the relationship out when Colleen picked lint off of Sydney’s sweater.
"I’m a mom," Colleen says. "I’m in mom mode."
Colleen the mom wanted to answer people’s questions about Sydney’s condition to educate them. Colleen the aide realized she needed to give Sydney her own college experience. She let Sydney decorate, hence their Frankenstein shower curtain and the black skull cutout on Sydney’s door.
Sydney became well-versed in her mom’s "Really?" face. Colleen became well-versed in her daughter’s "You can go now" face. Colleen found she had a built-in fashion critic. "I’m just trying to help you," Sydney said.
Like any college students, their diet went downhill at semester’s end. Finals brought Sydney’s favorite stress food, Publix fried chicken. She talked to her goofball long-distance boyfriend, back in Massachusetts.
Students got to know both Colleen, with her feathered blonde hair, and Sydney, with her spiky black fingernails and rose-streaked bob. They share the same big brown eyes and sharp wit. If people stared rudely, Colleen glared back. Sometimes she said, "Boo" to watch them jump. Sydney groaned, "Mom."
As the semesters passed, students invited them out as a package deal. Colleen learned to glance at Sydney: Can I go?
Sometimes the answer is yes, but sometimes Sydney wants a taste of college the way others get to have it — on her own.
So Colleen drops Sydney off at theme parties at the Kappa dorm courtyard, where campus security hover on the edge of the throng. That’s where Sydney and her friends park, too, otherwise students might spill their Solo cups on her chair. This is when Sydney entertains "boy questions." What happened to you? How fast does that thing go?
A drunk guy once got his toga caught in her wheelchair and broke the controls. She’s been glitter-bombed, paint-bombed, confetti-cannoned. The people-watching is exquisite.
• • •
Colleen is grateful for the 24-hour Walmart, where she can get late-night groceries while Sydney does her thing. She’s often up doing laundry until 1 a.m., when she becomes Colleen the Uber Driver.
If she can escape for a couple of hours, she’ll go walk on the beach at Pass-a-Grille, or even the quiet strip of campus sand. But she can’t count on that time. Sydney might need to work on a group project or attend the Academic Honor Council or drop in on campus officials to talk about accessibility needs.
Sydney promises she’ll put her mom in a nice retirement home one day to repay her service.
"She’s gotten out there and done it," Colleen says. "But she couldn’t have gotten out there and done it if I hadn’t given up everything."
This year, Colleen threw on a chauffeur cap and a tuxedo-print T-shirt and drove Sydney to the spring ball.
"I might as well joke about it," she said.
"Fine," Sydney said in her deadpan way.
• • •
Sydney thought about decorating her cap with "Don’t ask me what I’m going to do next." (She’s going with "I’m forever in your debt.")
She graduates on May 20, with a 4.0, a double major in psychology and music management, a minor in Japanese and Phi Beta Kappa honors, and with her mom sitting in the president’s section. Then she wants to take a gap year, and maybe land a job at Eckerd doing accommodations. She really wants to do a doctoral program in psychology, specializing in substance abuse.
Colleen may or may not join her. Both agree it won’t work like this forever. They’re each too independent.
Neither know when things might get worse for Sydney. For now, her lungs and heart are healthy. For now, Sydney is cruising toward the goal of having her own life, her own career, shared with the right person.
Colleen will get to have her own life, too.
"Now I have to figure out what I want to be when I grow up again," she says.
For her psychology internship, Sydney leads discussions with retirees at nearby Westminster Shores. It’s nice. The elderly don’t make the same assumptions as college students. Today’s topic, 11 days before graduation, is travel.
An old woman reminisces about an 11th century church, voice wavering. Colleen leans over to smooth Sydney’s hair out of her face. Then it’s Sydney’s turn.
"I haven’t traveled much," she says, and Colleen nods. She explains. Flying is painful. You get manhandled into your seat. Colleen chimes in: Your wheelchair gets tossed in with the luggage and breaks.
But there was a Make-A-Wish trip to Maui in 2009 that they both still think about. That’s Sydney’s answer.
"She took Maui," Colleen says next. "So my favorite trip is every time we’re coming back to St. Pete."
There must have been other trips, someone says. But Colleen waves her hand dismissively, as if to say, in another life.
Contact Claire McNeill at (727) 893-8321 or [email protected]