Author: Ali Renckens
The original article appeared in Union University’s newsletter Cardinal and Cream.
I feel my phone buzz, but I ignore it. I already know what it says: “Are you on your way?” It’s 8:17 a.m, and I’m two minutes late. I arrive at her door and knock. While I wait, I swipe away the text, reminding myself that being painstakingly punctual and detailed is the only way that Maria can function as a normal college student.
She’s probably been awake since 6:30 a.m. She’ll have showered, and her short, curly hair will have dried. If it’s still wet, she’ll worry about getting sick. She doesn’t want to catch a cold and have to miss class, she’ll tell me. She’s probably already put in a load of laundry. She hates having dirty clothes around.
I, on the other hand, am wearing a bandanna to cover up how greasy my hair is and recently bought a few new shirts to put off laundry a couple more days. She opens the door, wearing khakis and a light blue shirt that says “Get your shine on” in orange, swirly letters.
“Hey, Maria,” I say, walking in the door.
“Hi,” she says, turning to put away her iPad. She’s usually in her wooden rocking chair listening to Josh Turner or Elton John when I come in.
She asks if she needs her jacket, I usually say yes, she asks if she needs to bring her backpack, I tell her no, her class doesn’t start for more than an hour and she has plenty of time to come back.
The washing machine whirs in the background as opens the door with the sign hanging on it that says “you are my sunshine” and she disappears into her room to retrieve her jacket. The room is covered in signs that say “you are my sunshine” or “sunshine on my shoulders.” Two canvases hang over her bed. One sign leans on her desk. Three decorate the wall across from the desk. And a pillow in the shape of a sunburst lies on her bed.
With her right hand, she lifts a red Union women’s soccer jacket from a hook in her wall and eases it on. Then she hangs her purse around her shoulders, checks her phone and picks up her white can with the red tip. I open the door, she turns off the light and as we start walking to the cafeteria, she makes little arcs with her cane in front of her.
Today, she tells me, is the sixth anniversary of her grandfather’s death.
Maria got her first brace at the age of two.
“It hurt,” she said. She had to wear it all the time, day and night.
“Does this one hurt less?”
“You get to take it off at night, right” I ask, motioning to the black contraption of plastic bones and elastic straps that envelops her left wrist. There’s another wrapped around her left ankle.
She lightly touches the brace with her other hand, which looks like a child’s, small and smooth with closely clipped fingernails.
“Yes,” she says finally, although I’m not entirely sure which question she’s answering.
At age two, she also received her first pair of glasses, and the doctor declared her legally blind. Whenever she talks about her eyesight, which isn’t often, she stresses the “legally.” Her field of vision is extremely shallow, bit she can still see words and faces if they are close enough. She sometimes stares intently at my face, trying to make it out, I suppose. I often wonder exactly how much she can see. Her eyes are a honey-colored hazel framed by slender, golden lashes that look like they’ve never been darkened by a mascara wand. They never seem to settle on anything, peacefully flitting around the room, giving her an appearance of innocent wonder and curiosity.
She also has hydrocephalus, which literally means “water on the brain.” It’s a condition where fluid builds up in the skull and causes the brain to swell. It can cause brain damage, leading to developmental, psychological and intellectual problems that can’t be undone, only treated to prevent further damage. Maria has two shunts, long tubes with valves that allow drainage, running from her brain, down her spinal cord, into her abdominal cavity. The valves regulate the direction and pace of flowing cerebrospinal fluid, transporting excess fluid to where it can more easily be absorbed.
Shunts have to be monitored regularly. Maria’s have only broken twice. Her dad once mentioned that they know people whose shunts have broken over 20, leading to a range of symptoms from headaches to seizures.
“Sometimes I wish I wasn’t this way,” she told me abruptly over lunch once.
“Like what?” I asked, not knowing what to say, and probably choosing the wrong thing.
“You know.” She looked at her hands. It’s a habit of hers. She likes to spread them out, hold them close to her face and focus on them. “I wasn’t blind, and my brain worked.” She covered her face with her hand. “School was hard.”
I’ve never really had the courage to ask Maria about her past school experience, although I know she would be willing to tell me. She’s very open about her disabilities, but I’ve never heard her complain or mourn her struggles in any way.
(Side note: yesterday, I was complaining to about three different people about having to live at home this summer. And needing to do laundry.)
I do know that high school was when she became known as the Sunshine Storyteller. She memorized children’s stories and telling them to children at the Star Center or people in nursing homes. Now, she’s memorized more than 50 stories.
When we had a bit of down time during Welcome Week her first year, I asked her to tell me one of her stories. She instantly straightened up in her rocking chair and recited The Little Red Hen. It’s one of her favorites.
“Hi, Sunshine! How are you?”
All of the cafeteria workers know Maria. They all call her Sunshine, and they all know that she is going to ask how many swipes she has left. I don’t think they know my name, but they know my face through association with Miss Sunshine. Sometimes, I’ll come to breakfast or lunch alone, and they’ll ask about her.
“I can’t believe how cold it is,” Maria complains as she digs out her card. “It’s officially spring now. It should be warmer.”
“I agree.” The cafeteria worker smiles as she swipes her card. “You have 38 swipes left.”
We deposit our bags at a table. Sometimes, this takes a while. When it’s really cold out, Maria will accouter herself with a jacket, gloves and ear muffs, which she carefully removes. Then we get our food. I’ll go to the buffet with Maria in case she can’t tell what something is or needs help getting it. (The tongs can be difficult to manage). Usually, she gets scrambled eggs, whatever meat they have that day (bacon is her favorite), a biscuit and/or French toast sticks. I usually get cereal.
We put our food on the table, and I pour myself a glass of water while Maria goes to the juice dispenser for grape juice (“I don’t know why it’s so addicting,” she marvels). She sets her glass down on the table, hobbles over to the hand sanitizer dispenser, washes her hands, returns to the table, sits down, pulls out her own little bottle of sanitizer and sanitizes them again. (“I don’t want to get sick,” she says seriously.)
I’m already digging into my chocolate Chex. I swiped under the faucet after going to the bathroom earlier and had showered a day or two ago, so I feel pretty good about my personal hygiene.
We started getting breakfast together two years ago, when Maria first came to Union. That first semester, someone was on hand to walk her everywhere; before coming to Union, she had never been outside a building by herself. Unlike most college students, I’m a morning person, so I volunteered to take her to breakfast. She works with an orientation and mobility trainer every week to practice routes from different buildings and can navigate campus on her own now, but we still get breakfast a few times a week.
“I was 19 when he died,” she tells me, referring to her grandpa. “Ya know, he graduated from Union. His parents wanted him to be a dentist, and he was very insistent about what he wanted to do for a living.”
He bought land near Jackson and started a farm and a family.
“He was a wonderful father,” Maria says, “and he loved farming, and he raised nine kids on it. He was an outdoors kind of man. He loved, absolutely loved, being out in the sunshine. And he had a record that I fell in love with, you know the movie, Oh Brother Where Art Thou? He had that soundtrack, and I used to beg him to play that record for me because You Are My Sunshine is one of my favorite songs.”
Sometimes, while visiting her grandparents, she would see her grandpa sitting on the front porch by himself. She would join him so he wouldn’t be lonely, and the two would sit together.
He died in 2012, right after Maria graduated high school. He came to her party afterward, although he didn’t attend the ceremony. Maria says she didn’t think he would have been able to sit through it because it was “chill-yy.”
“I remember the funeral very well, because we were trying to decide who wanted to sing, and I jumped at the chance to do it.”
“Oh really? What’d you sing?”
“How Great Thou Art.”
“What kind of stories did he used to tell you?” I ask, dipping my spoon into my cereal.
“Well, there’s one story he used to tell, and it was kind of a saying, about this woman who lived in a hole. And it’s really short, it goes, ‘Oh my goodness, oh my soul, there goes Annie May down that hole.’” Maria laughs. “And he used to tell the Little Red Hen story to my mom and the rest of the family.
It’s 5 p.m. on Thursday at the Old Country Store, a restaurant built to resemble a large log cabin from the outside. The patrons converse over baskets of biscuits and plates of fried chicken.
Usually, she is right in the middle of the crowd, hugging frequent customers and greeting new ones with, “Hi! My name is Maria, but you can call me Sunshine” in her Southern twang. Tonight, though, she stands with the band. She rhythmically run her hand down the washboard or steadily clinks spoons together.
She doesn’t tell stories very often any more, but every Thursday night, she “jams” with the band at the Old Country Store, where she works as a greeter.
A little of girl of 8 sits near the band. She glances at her mom and scoots closer, eyes fixed on the band. Her mom calls to her, tells her to return to the table and leave the band alone.
But she caught Maria’s attention. “Come on up here,” she invites the girl.
With a wide smile, the girl joins the band and she and Maria sing a duet: “Sunshine on my Shoulders.”
A few weeks ago, Maria and Kelsie Layman, an EDGE student with Down’s Syndrome, had an early morning graduation photoshoot. Kelsie met me in my dorm a little before 7 a.m. “Nice pajamas,” she complimented me, walking in. I had slept through my alarm, so she sat on our couch while I shuffled to my bedroom, changed out of my ugly-Christmas-sweater onesie, and we walked over to Maria’s dorm.
“Did you study for your quiz today?” Maria asked Kelsie as we gathered up her stuff.
“We have a quiz today,” Maria reminded her.
“Yeah. You remember Ms. Johnson saying it.”
Kelsie muttered something about forgetting.
“You have time to study after we have our pictures made,” Maria assured her.
While we walked over to the library to meet the photographers, Kelsie and I bonded over the difficulty of getting up early.
“Now, we don’t want you oversleeping,” Maria said to Kelsie.
“Yeah,” Kelsie agreed. “It’s a habit of mine.”
“We don’t want you doing that when we move into the apartment, either,” Maria warned.
“I agree with that,” Kelsie sighed.
“Not that I’m trying to tell you what to do, I just don’t want you to get into that habit,” Maria gently scolded. “Like, if we have something big going on…”
“Yeah.” Maria paused, then switched the subject. “I’ll probably get back to campus really late Sunday night. We’re going to Memphis to see the Sound of Music.”
“I love that musical,” Kelsie cooed.
“I wish we had gotten you a ticket. You could’ve come with us.”
“That’s all right, Maria. Maybe next time. That’s one of my favorite musicals.” She sang, “Do Re Mi Fa So La Ti Do!”
“I like that one,” Maria responded. “And My Favorite Things.”
“I love that one. That’s my favorite.”
“I like Edelweiss, too.”
“I like that one, but I can’t really remember how it goes.”
“Edelweiss,” Maria sang.
“Is that how it goes?”
Maria kept singing: “Edelweiss, Edelweiss, every morning you greet me.”
“Sing it, Maria.”
“Small and white, clean and bright, you look happy to meet me. Blossom of snow, may you bloom and grow, bloom and grow forever. Edelweiss…”
Kelsie chimed in, “Edelweiss…”
To read the rest of the story, CLICK HERE.