Detroit mom, disabled son stranded at home for 5 years

Mom sat in a wood chair in her kitchen. She sipped her coffee in the early morning silence. It was Debra Westbrook’s only alone time before the long day began.

Down the hall, her baby boy was lying in bed in his room. He’d wake up any minute now, and Debra would spend the rest of her day taking care of him by herself.

Her baby boy is 35 years old.

Marvin McQueen Jr. was born with hydrocephalus, which left his brain underdeveloped. He has cerebral palsy, which keeps him bedbound. His glaucoma is nearly blinding. His sleep apnea is severe. He’s prone to seizures. He has no teeth because his anti-seizure medication ate them away, so everything he eats must be blended into mush. On top of it all, something bad happened during a hospital stay not long ago, robbing him of the few abilities he had, leaving him unable to do pretty much anything for himself.

Debra, 67, spent decades working for Detroit’s water department. Now her full-time job is Marvin. She feeds him, washes him, changes his clothes and keeps him company all day, every day, in their west-side house. His father was murdered when he was a toddler, so Debra raised him alone. And she vowed early on never to turn his care over to others.

“I’ll do all of this myself before I let somebody who he don’t know do it,” she said, sipping her coffee slowly. “Just the thought that somebody might mistreat my child in any kind of way is making me where I’m like, ‘Nah, y’all can’t have him.’ So the thought has never been there to put him in a home. The thought has always been it’s a pleasure to take care of my son.”

There are thousands of Marvins out there; ailing or disabled, hidden inside their houses, separated from the public, invisible to the outside world. Many live in adult foster care facilities where a large staff can look after them. But a small number of them are cared for at home by family members who selflessly devote themselves to giving them the best possible life in a familiar place, even if doing so means giving up most of their own freedom in exchange.

Debra always wanted Marvin's life to feel as normal as anyone’s. She took him to museums, to movies, to restaurants, sometimes just to Belle Isle, where Marvin would sit in the sunshine and watch the ducks on the water. He couldn’t walk, but he could stand briefly with a little help and lift his linebacker-size frame from his wheelchair to her car, or the other way around.

Then came that brief hospital visit. After he got home, he had almost no control over his body. He can’t lift himself up anymore. And at 280 pounds, he’s way too heavy for Debra to lift by herself out of a wheelchair and into her car. So ever since, the two of them have stayed inside the house.

For five years and counting.

“I had no idea that this is what we was facing when he came home,” she said.

Marvin’s life now takes place in his bedroom. The seasons are experienced through the window, the world is brought to him through television, the few people he encounters are visitors to his bedside.

And his mom is desperate to get him outside again.

* * *

Debra tiptoed her way down the hall and into Marvin’s bedroom. It was lit dimly by the soft blue light of the dawn.

“Good morning son!” she said with a big smile. “Did you have a good night’s sleep?”

Marvin was lying in his bed. He had a pudgy softness from years of inactivity. There was stubble on his face and on his head. He opened his eyes and turned his head to look at his mom. When he saw her, his whole face burst into a childlike smile. And when their eyes met it was with a shared gaze of deep love.

“Yes,” he replied very, very slowly. Marvin has the cognitive skills of a sixth grader, doctors have said. But he has trouble speaking, and his words become stretched into long, growling rasps that sometimes only his mother understands.

Each morning begins the same. Debra tells her son the day, the date and the month. She tells him whose birthdays are coming up and what holidays are just around the corner. Every day, he asks whether it’s his birthday or whether it’s Mother’s Day. He likes to celebrate both.

“Today is the 10th of February,” she announced. She noted that Tasha just had a birthday. That Mo has a birthday on the 22nd. That Valentine’s Day was just around the corner.

“And you know what happens on Valentine’s Day?” she asked with excitement. “That’s the day for chocolate candy! We ain’t usually eating all that candy, but on Valentine’s Day, we’ll eat that chocolate candy.”

“Yes!” Marvin said, smiling at the thought.

His room was clean and neat. The bedsheets were freshly washed. The pillows were soft and puffy. The walls were scrubbed. The air was fresh.

“You ready to take some medicine?” she asked Marvin.

“Yes,” he replied, and it took a long time to say.

Debra put a pill on his tongue for his thyroid condition, and another pill to control his muscle spasms, followed by two liquid anti-seizure medications squirted from plastic syringes into his mouth. He grimaced at the bitter taste of it. “All right son, just a little bit of water to wash all that down,” she said gently, putting a cup to his lips. Then eye drops for his glaucoma. He blinked away the sting. She wiped his face tenderly with a cloth. The worst part of his day was over.

“All right, so I’m gonna get your breakfast made,” she told him. She turned on his TV.

He opened his mouth to speak. He held it open wide as he looked her in the eye. No words came out at first. Debra waited with patient anticipation. She smiled at him the entire time as he struggled to say it.

“How are you?” he asked her at long last.

“I’m good, son! I had a good night’s sleep and I’m ready to tackle this day! Now, let’s check that diaper.”

* * *

Marvin was born three months early. He weighed just under 3 pounds. And he had several birth defects.

He spent three months in the intensive care unit, another six months in a hospital bed. A shunt was inserted in his skull to drain the fluid building up. “I just didn’t know if my son was going to make it,” Debra said. I “just didn’t know. But I had faith.”

By the time he was 7, doctors performed an operation to replace the shunt. By the end of that year, he’d endured eight surgeries to fix it. By the time he was 21, he’d undergone 145 brain surgeries.

Yet, he beat expectations. He outlived doctors’ predictions of a young death. He attended special education classes and graduated at age 26. He could even walk haltingly with a brace on his leg. And though his body deteriorated over time, he could still hoist himself in and out of his mom’s car and his wheelchair so they could get out of the house and go on adventures together.

“For others looking at her and seeing what she has to do when it comes to Marvin, it seems so heavy, it seems almost too impossible. But when you see her and you meet her, and you see how she interacts with him, it’s always with love and joy, and it’s never a burden for her,” Danielle King, Marvin’s 41-year-old sister, said. “And if you talk to Marvin, you would not know that he has these limitations. He’s such a happy and loving man, and that’s because of my mother.”

But five years ago, he had an intestinal obstruction so serious he was taken by ambulance to the hospital, where he spent 17 days as doctors worked to clear it. He hasn’t been the same since.

“He lost all his skills in those 17 days,” Debra said. Nobody could explain why. He was delivered to his bed, where he’s been ever since.

* * *

Now that Marvin was awake, Debra changed his diaper, wiped him down and prepared some oatmeal for breakfast, which he swallows whole since he has no teeth. Everything he eats needs to be turned into mush that he can gum and swallow easily. Debra cooks whole meals for the two of them and then purees his portions for him. Vegetables, meatloaf, grilled cheese sandwiches, spaghetti with meatballs, doesn’t matter what it is. All of it goes into a blender. All of it becomes a paste.

She brought him the oatmeal in a large bowl, propped it against his chest, and lifted his one good arm out from under him so he could spoon the food into his own mouth, her effort to keep at least part of him moving under his own will and control. “Father, I thank you for this food that I’m about to receive in Jesus’ name, Amen,” she said for him.

That gave her a brief break. She left him with his breakfast and sat by the large front window in the dining room, where she looked out to the snowy street at the birds and the squirrels and the mailman walking his route.

“I don’t usually have a chance to be alone, ‘cause Marvin will call for me 50 times a day,” she said. “And each time he calls me, I go in there.”

She thought about the rest of her day. She’d eat a little bit of cereal. Go talk with Marvin. Make him lunch. Give him some vitamin D since he never sees the sun. Sit with him as he watches his daytime shows. Later she’d make him dinner, and she’d eat some too. They’d play board games. “I really do most of the games, but I make him feel like he’s doing it,” she said.

And before bed, they’d take part in a nightly family prayer meeting with relatives online, where each evening she offers thanks to God for another day’s chance to change Marvin’s diapers, wipe him down, feed him, scrub his room, wash his bedding, sit by his bedside and get up throughout the night to gently put his slipping oxygen mask back on his face.

“With everything that happened with Marvin, I’m just thankful that he’s still alive and here, because it could’ve been a whole different story. And Lord knows, God only knows, what I’d do if my son had to leave here,” she said. “So no matter how much he may throw up, no matter how much he may poop, no matter what he goes through, it’s a pleasure for me to be able to take care of him.”

* * *

All along, Debra was determined to get him outside again. She got a mechanical lift to hoist him from the bed and into a wheelchair. But his old wheelchair was so slippery she’d find him in a crumpled heap on the floor if she left the room for a minute. “Sometimes the fire department came to help me get him up, sometimes the police came.” So she quit using the chair.

She got a better wheelchair. But Marvin can’t hoist himself out of it and into Debra’s small car like he used to, and he’s way too big for Debra to lift. So their outings are limited to the living room.

Debra’s former boss at the city’s water department heard about Marvin’s situation and was so moved, he said, he kept waking up at night thinking about it. He rallied some old friends and helped collect enough donations to buy them a wheelchair van last month. One donor gave thousands of dollars after merely seeing how Marvin and Debra smiled at each other.

“He fell in love with the kid and how he looked at his mother, the genuine love there,” said Charlie Williams, who organized the fundraising and bought the van. “And same with how his mother looks at him.”

The van was delivered to the house. Debra was thrilled. She made a long list of things to do with Marvin to make up for lost time.

And it turned out that the old portable wheelchair ramp they’ve been using isn’t the right size to get Marvin’s new wheelchair from the house, over the old landing and down the old steps, and then into the new van. They need a ramp built from his room to the driveway, and a doorway to get him from his room to the ramp. She doesn’t have the money for that.

So they remain stuck in the house.

* * *

Mom sat in a wood chair in the kitchen. She sipped her coffee in the early morning silence. It was the next day.

Down the hall, her baby boy was lying in bed in his room. He would wake up soon, and his mother would spend another whole day taking care of him by herself.

“I feel like ain’t nobody ever gonna take care of him the way that I do,” Debra said. “Because my goal is to make Marvin happy, and every night he tells me, ‘Mama, I had a good day with you.’ I honestly believe he don’t even know he’s disabled. I honestly believe it.”

Outside the window, birds chirped in the bushes. Squirrels chased each other on the snowy lawn. And an unused van sat parked in the driveway.

Debra finished her coffee, stood up and tiptoed down the hall to her son's room to begin another day with him. Same as the day before, and just like the one that would follow.

“Good morning son!” she said. “How did you sleep?” And when he turned his head toward her, they smiled at each other like there was nobody else in the world.

For more information, see Marvin’s GoFundMe page: gofundme.com/f/doordeckramp

John Carlisle writes about people and places in Michigan. His stories can be found at freep.com/carlisle. Contact him: jcarlisle@freepress.com. Follow him on Twitter @_johncarlisle, Facebook at johncarlisle.freep or on Instagram at johncarlislefreep.

This article originally appeared on Detroit Free Press: Detroit mom, disabled son stranded at home for five years