The maps cover the walls of the master bedroom. From the ceiling to the baseboard, Susan Senese has decorated her space with winding roads and far-off dreams. Each colored highway branches over its glossy atlas page like a vein from a heart. To her, these paths are her lifelines.
“The walls are closing in,” Susan Senese says. “This is a way to keep them from closing in.”
Her daughter, Brittany, is sleeping in the living room. She sleeps more now than she ever did. All day, sometimes, in a special hospital bed by the window. She has lissencephaly. Meaning “smooth brain,” she has no folds in her brain from a rare, gene-linked malformation.
Susan Senese sits on the edge of her daughter’s bed. She rubs her forehead and calls her Bee. She thinks Bee is slowing down. Bee was only supposed to live until she was 2. She is 20. There’s no way to gauge her life expectancy. There’s no way to tell if she is at the end.
From her spot on the bed, Susan Senese can see the medical boxes of specialized food and diapers stacked by the front door. They are so heavy Bee’s 16-year-old brother, Noah, has trouble picking them up. The delivery man comes at least once a week.
Then there’s the prescriptions. The counter in the kitchen is covered with bottles — fat ones, tall ones, spray tops and twist offs.
Besides Bee’s illness, there’s a lot the Seneses have been through: a divorce, living in a dangerous motel for a year, the tedious move to Plant City, one broken car.
They push on, but Susan Senese needs help. She has landed a part-time gig doing product demonstrations at Publix. Without a car, it is hard for her to find full-time jobs and to shuffle the family to Bee’s doctors appointments. She also has her own health issues, including lupus.
“We have to do something to make this change,” Susan Senese says.
The maps are the answer.
She’s started a GoFundMe account to raise money to buy a car. If she can get a full-time job, she will be able to save some money so the family can move to a better apartment — and hopefully see something else besides the inside of a hospital room.
BEE IS HERE
Susan Senese points to one of the canvas paintings on the wall in the family’s living room. It’s a bowl of fruit, a common subject, but there’s something unusual about the way this one was done. The grapes are textured with a hundred half circles. The bananas are smudged and somewhat translucent. The cherries are thick like drops of blood on a white sundress.
Bee painted it almost 20 years ago. She used her fingertips for the grapes, the side of her foot for the bananas, her toes for the cherries. She paints like this with her family’s help.
She can’t see. She can’t talk.
But she can feel the paint. And she can hear Noah’s voice.
The family has plans to help her complete a picture of springtime, even though she can’t sit up because of her cerebral palsy.
Why do they go through the trouble?
“It says she was here,” Susan Senese says. “She can’t go to school, make friends. So it’s a way to say she’s here.”
Susan Senese had no idea that the baby girl growing inside of her two decades ago had brain damage. She saw a doctor through her pregnancy, and the sonograms revealed no irregularities. The toughest part of the pregnancy didn’t have anything to do with Bee. Susan Senese, then a kindergarten teacher, caught a virus from school.
Bee was born a healthy nine pounds, and her first feeding was a full four ounces.
“She was perfect,” Susan Senese says. “You would never know.”
But at about 4 weeks old, Bee started convulsing during feedings. Even though they were slight, Susan Senese knew something was wrong.
The doctors put her off. You’re a new mother. You’re over concerned. Those are just normal baby movements.
So she brought Bee into the office to show them.
She was right. Something was wrong.
Tests revealed lissencephaly. The virus Susan Senese had caught from the classroom had affected Bee in her embryonic stage.
Bee had two years to live — if she was lucky. One of her neurologists told her mother to put her away in an institution and go home to have healthy children to love.
“We had just bought a house, and we were decorating her room,” Susan Senese says. “We had six months to imagine this life she’d never have.”
Susan Senese has kept Bee by her side since then. And she plans to for the rest of her life. Bee is surrounded by the people who love her. She likes to feel their fingers painting with her. She waits for Noah to read to her.
“It’s just normal for us,” Susan Senese says. “Once you put away the ideas of ballet classes and overnight sleepovers with friends, it’s just everyday things.”
Noah agrees. He walks into the living room to talk to his mother, who is still sitting on Bee’s bed. When he speaks, Bee wakes from her deep dreaming. She mumbles sounds that barely escape from her drowsy lips. She is talking to him.
“Just normal,” Noah says. “It’s weird when I hear people say, ‘I didn’t grow up with a disabled sister.’ She’s always been there.”
A NEW LEASH ON LIFE
Noah has snuck a tortoise and a kitten into his classes at Plant City High School on two separate occasions.
“Noah, why do you have another animal?” His first period drama teacher asked him when he brought the kitten into his classroom last year.
“There’s drama in drama class,” Noah says.
The kitten was running through traffic when Noah found it while walking to school. Noah walks everywhere since the family doesn’t have a car. There are many injured animals he stumbles upon on the side of the road. He has found a gopher tortoise with a cracked shell, a baby squirrel abandoned on top of an ant hill, a snapping turtle that had been run over.
He takes the animals he finds to the vet. He says his good deeds are just because he likes cute, fuzzy things, but one can’t help think, after a lifetime with a special needs sibling he has a caring nature buried under his love of history and Australian highway bandits.
Noah is finishing up his GED two years early by taking online classes. He had a part-time job to help support the family, but after the business he worked at closed, his mother insisted he focuses on school first.
Susan Senese has high hopes for her son. He’s a big reason why she has decorated her room with her own makeshift map wallpaper.
“He has been dreaming of college for as long as I can remember,” she wrote on the GoFundMe page. “His long-held hope is to become a psychologist with a twist — he hopes to add rescue animals to his practice as therapy animals. “
If Susan Senese can raise enough money to buy a car, she could save money for the family’s basic needs, and also send Noah to college and move the family out of their current apartment.
After her divorce several years ago, the family was living in a motel room next door to drug busts and alcoholics. Originally from Plant City, Susan Senese moved her children from Ocala back to her hometown with the help of friends. Their current apartment is an improvement, but it leaks, the floor is uneven, Bee’s medical packages have been stolen off the doorstep and their old car was broken into.
She is dreaming of anywhere with a good book store and a place Noah would like too.
But out of all the states, out of all the cities on her maps, where will they go?
TRAVEL PLANS
Susan Senese wants to move to a beachside cabin in Maine. Noah wants to go to Ohio.
“Don’t know what’s there,” Noah says. “A couple of friends talked about it, and it seems like a nice place to live.”
The family wants a break from the Florida humidity, mosquitos and rain. Even Bee is suffering from allergies during this record-breaking summer of thunderstorms. Susan Senese has her hooked up to oxygen to avoid catching a respiratory infection.
Susan Senese doesn’t know what path her family will travel next. But with Noah’s interest in Ohio, there is a new wanderlust for life budding inside of her and a new direction spinning on her inner compass.
“Hope is dangerous,” Senese wrote. “And so I gave up hope and have lived with such desperation, such darkness. But, suddenly, I can see a small light, and I have decided to act boldly, for my son, for hope.”
To donate to the Seneses visit GoFundMe.com/HopeAndAPrayer