I Can’t Die Before My Son

After raising a severely autistic son to adulthood, a single mother’s brush with death raises the horrifying question of what will happen to him when she's gone.

I Can’t Die Before My Son

For several months Diana Rivera knew something was wrong. She felt a dull ache in her heart. Walking up her stairs became a monumental effort. At night she would drop like a stone onto her bed, winded and exhausted.

Her heart had always been a problem. Years ago, she had been told that it had a strange rhythm, a faint clicking sound and murmur. But this felt different. Her heart was beating too fast, the dull ache would sometimes turn into a sharper pain that she could not ignore.

One cold January day, doctors told her the prognosis: Her heart valve needed to be opened. It should have been round like a straw so blood could flow into the left side of her heart. Instead, her heart valve was as flat as a piece of paper. If they didn’t do open heart surgery soon, she could die.

As she drove home from the doctor’s office sobbing, she was franticly eager to see her son, Anthony, to hug and kiss him. That always made her feel better. But she had to get ahold of herself, wipe the tears, calm down. Anthony could not see her like this.

It was not death she feared. She was a twice-divorced, fifty-nine-year-old single mom who had survived cancer and a stroke, an abusive mother and first husband. She had always been a woman of faith. What she feared more than death was the thought of leaving her son alone in the world. After all, Anthony was not like other children. He was really not a child, at all. He had just celebrated his fortieth birthday.

Anthony has the mental capacity of a five-year-old. Born severely autistic, he can not be left alone for more than a few minutes for fear he might hurt himself or wander off. He is demanding and will throw a tantrum if he wants something badly enough. He is loving and gentle and helpless.

That night, after she made sure Anthony was asleep in his room, she closed the door to her bedroom, placed her face on her pillow and cried gently. She was scared, with only her cats, Mamacita and Papacito, lying at the foot of the bed. Anthony had defied the odds; nobody thought he would’ve made it this far. But as she lay in bed, she felt the weight of her sick heart pounding beneath her chest bone, and the question circled viciously in her mind: What would happen to Anthony after she died?

Diana was born in Robstown, deep in the cotton bowl of central Texas. On her family’s annual trek to pick cotton, her mother’s sudden labor forced the group of three open-air trucks, carrying dozens of people, to stop. Barely eighteen, Eva, made it to Robstown General Hospital. Her hands were calloused and rough from picking crops, and she cursed and punched and kicked her way through the birth as if she longed for this child to never have been born. Diana had been conceived in the wrong way: Her father, Santos, was married to another woman and his wife was pregnant with their first child when he met Eva. Both his first wife and baby died in childbirth, and Santos did what he thought was right, which was to marry Eva. But they loathed each other and the destructive ferocity of their hatred would seep into the family’s very fiber.

When she was only two years old, Diana wriggled her way out of the canvas sack her mother wore as she hunched over picking cotton. It was a sign of things to come. She wanted to explore, and even at that young age, perhaps subconsciously, venture as far as she could from her parents and the life they led as migrant farm workers. It was as if Diana’s mere presence reminded Eva of the forced, loveless marriage she was forced into.

Below the white mounds of cotton blooming off the brown plants in the stifling Texas heat, Diana could pretend she was on an adventure. She would find roly-polies and ants. It was her own quiet world, shielded from the rugged and brutal labor of the adults. The day she wandered off , her family hollered out her name in a frantic search.

But all she could do was stand in the field and point up at the sky. There, emerging out of the clouds, was a mouse tail, long and grey and twirly and dancing along merrily in the sky. “Look, look! Raton!”

Her grandfather heard her and jumped above the cotton plant, scooping her up in his large, gloved hands. She kept pointing up at the sky.

“Look! Look! Raton!”

The air was so very hot, as if they were in a sealed room.

Her grandfather glanced upwards, his eyes opened wide in horror. A tornado was headed their way. “Everybody run!”

Diana didn’t understand what was happening. She was ushered into a metal shed above ground. Her father placed her on top of a metal cot and lay on top of her to protect her from the rain, lightning, thunder and pounding wind. Her mother, lying on another metal cot, was four months pregnant. A bolt of lightning zapped Eva’s body. Diana heard her cry out in pain. She could feel her father’s heartbeat against her, his breath short and terrified.

And then it was over.

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The quiet returned and a light drizzle continued. Eva was in shock but fine. As Diana’s father peeled himself off and stood, her grandmother came to her. An Indian from the mountains of Northern Mexico, her grandmother was a curandera, or shaman. It was rumored she had escaped Mexico during the Mexican Revolution with Diana’s grandfather, the man who had hired her as a maid. She was tiny and round, her skin a deep cinnamon color. She wore braids and her kindly eyes shone when they looked at Diana. She blessed Diana, who was sitting up on the cot, still dizzy from the day’s events.

“You saved us,” her grandmother said. “If you had not noticed the tail, there would not have been time to run.”

Later on, she carved two angels from wood, for Diana to keep near her at all times.

“Most people need one guardian angel,” she said. “You will need two.”

I tried to buy Anthony a pair of shoes he wanted for when he goes fishing…we both forgot about his webbed toes. I remember when he was born, counting his fingers and toes…seeing two on his right foot webbed, I thanked God! I had been prepared for much more…and considering what he went through even before he was born, I was grateful, still am. Every day I thank God for my boy, he is truly a living Miracle!

– Diana Rivera, Facebook entry

Forty-two years ago in the children’s ward of Knapp Memorial Hospital in Weslaco, Texas, no one thought Anthony would last the night. Born premature, his skin a frightening purple and the umbilical cord wrapped around his neck, doctors warned Diana that if he lived, he would have severe brain damage. He had been deprived too long of oxygen. But Diana would not accept the doctor’s prognosis.

When he was four months old, he got double pneumonia and a fever that raged above 104 degrees. Nurses soaked him in water with ice cubes but even that would not bring it down. Doctors told her that if he lived, he would never walk or talk. He would be, they told her, “a vegetable.” But again they were wrong.

Anthony Rivera (Photo courtesy Diana Rivera)
Anthony Rivera (Photo courtesy Diana Rivera)

A month later he got double pneumonia again and this time doctors were certain he would not make it. Diana got down on her knees and asked God to save him. If he lived, she would spend the rest of her life making sure Anthony had the best life she could give.

In the morning, he was alive.

Diana worried that exposure to pesticides and other agricultural chemicals from her migrant farm work might have caused Anthony’s problems. Or maybe it had been her husband, a man she married at the age of eighteen to escape her impoverished and abusive family, who displayed fits of anger and would sometimes punch her in the stomach. Or maybe it was her O-negative blood type and the weekly injections of Rh antibodies she had to take when she was pregnant. Was it the high fevers, the cord around his neck? Or maybe she ate too many mangoes when she was pregnant. She wracked her brain trying to figure out what had caused so much damage to her little boy.

By the time Anthony was one, Diana had divorced his abusive father. Her ex-husband had nearly killed her one night in a drunken fit of anger when she tried to stop him from harming Anthony. As he lunged toward the baby, she stepped in, and met his fist head-on. She put the baby in a laundry basket and shut him in a closet while her husband dragged her away and pummeled her. When he was done a few hours later, she vowed to leave him and never return. She moved in with a friend and decided to get her high school diploma, attend college and then law school. She got her law degree at thirty-nine.

It was evident to her that her son would not be a so-called normal child. He missed all the developmental benchmarks: He could not communicate, and he cringed with loud noises and shrieked in pain when touched. It was the mid-1970s and doctors diagnosed him as a schizophrenic — a false diagnosis that Diana never believed in the first place. For Diana, each passing year was tinged with the anxiety that, maybe soon, her son would be taken. She was battling the inevitable. But Anthony continued to cheat the fate his doctors had forecast.

Instead, he continued to grow. Friends and relatives told her what Anthony needed was some space, to make friends like any boy. So when he was seven, she took him to the local Boys & Girls Club. She explained he had developmental issues and needed to be looked after. She let go of his hand and, with a nervous shudder, she got back in her car to go home. But as she pulled into her driveway, she turned around. Something didn’t feel right. She walked back through the doors of the Boys & Girls Club and searched for her son. He was nowhere to be found.

The young woman in charge told her she was sorry but there were too many children for them to keep an eye on just one. Diana, hysterical, called the police. They told her to go home and wait for him. Diana reeled through all the possibilities in her mind — he could have been kidnapped, or attacked by dogs. Anthony was terrified of dogs! If he was lost, he didn’t know his address or phone number. How would they ever find him? What if he crossed the highway between the Boys & Girls Club and her house? After an agonizing hour, Anthony appeared at the front door. He had leaves and twigs in his hair and scratches on his face. She asked him how he made it home. He pointed at the highway. “How did you cross the highway?” she asked. He lifted his hand up and signaled ‘stop.’ Anthony had apparently directed cars to stop on the highway just like he had seen in a Disney movie. Diana didn’t know whether to hug him or strangle him.

It was not until he was twelve that Anthony was finally diagnosed with severe autism. It explained his tendency to wander, since half of children with the disorder are wanderers. In the 1980s, most schools were hardly equipped to take in children with disabilities. Many children of Anthony’s generation were sent to institutions or homes for the “mentally retarded.” But Diana demanded that Anthony be allowed instruction in their local public school. The teachers in her area were not trained to deal with children with developmental disorders, and the term autism was not yet in the lexicon.

The school placed other severely disabled children in the same classroom with Anthony. The other children would bang their heads against the walls, scream or screech, sending Anthony into a panic. To him, the noise was earsplitting and magnified by his sensitivity. And so Diana demanded that he be “mainstreamed” into the public school. It was a bumpy road. He did not make eye contact, or many friends, but by high school, Anthony was where he wanted to be — with all the other kids.

Anthony was becoming more social. He noticed that all the pretty girls hung around the football players. So he asked his mother if he could play football. Diana convinced the coach to let Anthony suit up and sit on the bench as an “honorary” member of the team. During the last game of the season, he was allowed to do the kickoff. The crowd on both sides of the field went wild. It was a moment both he and Diana would savor.

But in his senior year, Diana was informed that Anthony would not be allowed to graduate with the rest of his classmates. He would have to attend a ceremony only for the special education children. Anthony had a fit and Diana stormed into the principal’s office demanding that her son graduate with the rest of his classmates. The school relented and when Anthony walked across the stage, the class roared in congratulations.

The night Diana was diagnosed with a bad heart, she thought she was crying silently. But Anthony could hear her. Anthony had known she was sick for a while. By six a.m., he was tapping his right index finger on the keyboard. He was on Facebook, writing about what he would do if his mother died.

Diana and Anthony Rivera (Photo courtesy Diana Rivera)
Diana and Anthony Rivera (Photo courtesy Diana Rivera)

good morning thank you for praying for my momma ples pray som mor she stil sik…

Besides Diana, Facebook is the only family Anthony knows. He has not seen his biological father in forty years. His grandfather died years ago and he rarely saw his grandmother or any of his aunts or cousins. Since graduating from high school, Anthony, now 43, misses it terribly. Facebook allows him to be social again. Typing with only his right index finger, Anthony spells phonetically, checking out his fan base every day, always signing off by saying “I love you by.”

With Facebook, he can send a shoutout to the universe to let everyone know how he is feeling. His friends greet him in the morning, say goodnight to him in the evening, give him a thumbs-up when he behaves, remind him to listen to his mother or just post on his home page to say hi.

But sometimes he takes their friendships too literally.

He once posted his address and invited all of his Facebook friends to his forty-first birthday. Diana went to the dollar store and bought a pink flamingo cut-out for the window, leis for everyone to wear, tiki torches, hula skirts and flowers for the luau-themed party. She cut up watermelons, pineapples, mangoes and strawberries, in expectation of a large crowd. Anthony couldn’t wait for his new friends to show up.

But by three p.m. only three adults had arrived. Anthony paced back and forth in the living room. He looked at his mom and asked her to call more people. Where were all his Facebook friends?

That night he got on Facebook.

i,m sad only a fu peple came to my party nobody got in the pool my budi leroy and gilbert came and 3 ladis and 3 babis my momma say its ok we go to red lobster tomoro i go tak a showr now i love you by May 19, 2012

Sixty-three people wished him a happy birthday on Facebook. His friends tried to explain their absence by saying they lived too far, such as his friend Phillip in England or Dawn in Louisiana or Gabriel from Edinburg, Texas, who was called in to work.

With any child it is difficult to explain disappointment. With Anthony it didn’t compute.

But the Facebook family came through in a big way when Diana got sick.

….if she dis i wil kill mysef i dont hav anyone to tak care of me i hear her cry last nit i,m sad i dont lik to hear her cry i pray to jesus now i love you by

From Illinois to Texas, to California and Florida, his cyberfriends went into action when they saw his post about killing himself.

Please don’t do it, God is watching you and your mother will be fine.

Anthony crawled into bed with his mom that morning. He did not tell Diana what he had posted. But several phone calls from friends all over the country woke Diana and let her know what Anthony had said online.

Diana could only hug her boy and cry inside.

Diana has seen what happens to adults with autism when their parents or loved ones can no longer take care of them. If lucky, they end up in group homes with other developmentally disabled adults and a caretaker. Anthony would not like that.

What would happen to his routine of waking up early, skipping into his mother’s room and waking her with a sweet “Good Morning, Mama?” He greets the day with Willie Nelson, listens to Elvis after his shower, and for breakfast he will put on Mexican rancheras by Vicente Fernández. He falls asleep to Julio Iglesias. He loves to paint giant canvases in raucous colors to the tunes of his favorite music. He has even sold a few paintings and exhibited them in galleries. He does not like to be interrupted. Other than his music, he likes being surrounded by quiet, and his paintings. He is terrified of dogs and thunder.

Diana is determined to expose Anthony to more than he might be comfortable with. She took him to New York City, for instance. And in October, he was invited to Scotland to represent Texas at the International Naturally Autistic People conference. Diana hopes to be able to raise the money to go.

Who would console him through those Texas thundershowers that send him running into Diana’s bed screaming in fear? He likes to take ten showers in one day when he’s upset. The warm water soothes him. Would his caretakers understand?

And who would make sure he didn’t drink any soda pop, which wreaks havoc on his health? Who would cook him the gluten-free diet of organic salmon and fresh vegetables that Diana carefully prepares for Anthony’s delicate digestive system?

Would he ever again go on his weekly outing to his favorite diner, Luby’s, where all the waitresses know him by name and giggle when he kisses their hand?

Diana could not go before her son. She needed more time and she was determined to defy the odds once again.

Lord I would ask you for patience, but I’m already giving Job a run for his money…so please give me Grace that I may be the best momma to my son that possibly can be…

While he has some friends in San Antonio, much of their community is in cyberspace. Diana has reached her 5,000-friend limit on Facebook, and Anthony has too. Every day they both reach out to their cyberfriends and fill them in on their ups and downs. Even if he has some friends nearby, loneliness looms. Studies have shown that adults with autism long for friendships, but if they do not have them, they may be especially vulnerable to depression and low self-esteem. A few days ago Anthony’s teacher left for another job. Anthony was devastated. “I’m not a job, I’m a good boy,” he told his Facebook friends. Anthony always thinks it is his fault when people leave.

Lately Diana, now sixty-one, has been feeling better, but still suffers from exhaustion and fatigue. She suffers seizures that make her pass out. She has not had her mitral valve repaired but hopes to next year. A friend from law school has agreed to be Anthony’s guardian, and Diana has created a trust for him. But money is short and the trust has nothing. Her dream of creating a home for Anthony and other adults with autism is still only a dream.

She has tried to create a safe world for him. But time continues to weigh heavily on her. As she lays her head on the pillow at night, she prays that those carved wooden angels her grandmother made will hover nearby, surrounding and sheltering Anthony with their wings.

He craves human contact and communication. Lord help me make my baby happy.

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Leela Corman is an award-winning illustrator and cartoonist. She is the creator of the graphic novel Unterzakhn, among other things. Follow her @LeelaOfNewYork.