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Lindsey Lou
06-13-04, 10:09 AM
A dream to spread their wings
By MEG KISSINGER
mkissinger@journalsentinel.com
Posted: June 12, 2004
First of three parts

Unsteady Steps:
A Family's Journey

About The Series

Jose and Steven Lugo were raised to think they could do whatever they wanted, despite their cerebral palsy. That philosophy was at the root of their success. It also exacted a heavy toll on them and their family.
TODAY: A goal is set, and dreams take flight.
MONDAY: A taste of freedom, and then vulnerability.
TUESDAY: As graduation looms, challenges all around.

Photo/David Joles
Identical twins Steven (left) and Jose Lugo, 19, look out at the Atlantic Ocean in Barceloneta, Puerto Rico, last summer. The brothers, who were born with severe cerebral palsy, return with their family to their native Puerto Rico each year to spend part of the summer with relatives and friends.



Photo/David Joles
Steven (left) and Jose Lugo, 19, sit outside their home in Milwaukee last month, talking about their love interests and a weekend camping trip. The brothers agreed in 2002 to walk across the stage at their graduation Tuesday.



Photo/David Joles
Steven Lugo shares a wedding dance with sister Marieta, a teacher in Milwaukee, whom the twins introduced to Luis Cruz, their school bus driver. The couple married on July 26 in Puerto Rico.



Photo/David Joles
After disembarking from his school bus, Steven Lugo veers off a path cleared for his wheelchair near his home after a snowstorm in January.



Photo/David Joles
Steven Lugo waits for the school bus in March at the family's home, on the south side.



Photo/David Joles
Maria Lugo gets Jose ready for school at Hamilton High after awaking at 4 a.m. with her husband, Juan, to help Jose and Steven. The twins were born two months early nearly 20 years ago in Puerto Rico. To get adequate care, the couple moved the twins to the United States. The rest of the family came later.



Photo/David Joles
The twins blow out candles on their cakes during their 19th birthday party July 27, 2003, at a Chinese restaurant in Vega Baja, Puerto Rico.



Maria Lugo awoke this month to the sounds of her twin sons in the bedroom down the hall.

Steven, 19, was crying.

"Take it easy," she heard Jose tell his brother. "There is more to life than this one thing."

Steven was too upset to listen.

In late fall 2002, Jose had announced that he would walk across the stage at Milwaukee's Hamilton High School on graduation day - June 15, 2004. Reluctantly, Steven had agreed that he, too, would go without his wheelchair. The twins, born with severe cerebral palsy, have never been able to walk alone. The plan was this: Steven would use his walker; Jose would use crutches. It would take a year and a half to gain enough strength to even attempt such a thing.

When people heard of their plan, they smiled tenderly and cooed, the way they do when a soldier promises to be home by Christmas or a dying mother vows to be at her daughter's wedding. They hope it will happen, but they aren't willing to bet on it.

Now graduation loomed just 10 days away. Steven was nervous, unsure he would be able to make it across the stage. But he was also frustrated and scared about what would come next. Everyone would be asking: "What now, guys?" He wouldn't have an answer.

After a lifetime of waiting at the bottom of stairs he couldn't climb, watching countless basketball games he couldn't play and holding books he couldn't read, Steven was ready to burst.

"He wants so bad to be able to do what the other kids can do," his mother said.

Jose long ago had become resigned to his fate. He expected his mother to cut his food and brush his teeth, and his father to dress him each morning and put him to bed each night.

Steven ached to be free.

And so Maria lay in bed, listening to the voices down the hall, her heart breaking.

She turned to her husband.

"Listen to your sons."

Tears welled up in Juan Lugo's eyes then, too. All his instincts told him to get out of bed and comfort the boys.

But he paused.

For nearly 20 years, the couple had raised the twins to think they could do whatever they wanted, despite their cerebral palsy, whether it was camping in the woods of central Wisconsin or swimming in the ocean at their homeland of Puerto Rico.

That promise has taken its toll on Maria and Juan, and on their four other children. Now, overhearing the bedroom conversation, Maria realized that it came with a dear cost for the twins, as well.

"They are men now," Juan finally said, sighing. "They will have to work this out on their own."

'Born dead'
Maria knew something was wrong from the moment the twins were born, two months early and clinging to life in a rural Puerto Rican hospital on July 19, 1984. The Lugos lived 10 miles from the ocean, in rural Bayamon, where Juan was a police sergeant.

"I kept saying, 'I feel funny,' but no one listened," she said. She remembers the delivery now in slow motion.

Juan Estevan Lugo, or Steven, was born first, at 31/2 pounds. Juan Jose Lugo, Jose for short, came seven minutes later, weighing just over 4 pounds and ghostly silent. Maria gasped when she saw them. Their faces were blue, and their arms and legs were black from lack of circulation. Jose's umbilical cord wrapped around his neck, cutting off the flow of oxygen to his brain. Steven's lungs were underdeveloped, and he was in respiratory failure.

"Jose was born dead," Maria said. "He was not breathing for the longest time."

He was also bleeding into his brain.

Maria was in trouble, too. Blood clots in her lungs were threatening to burst. She was whisked away to emergency surgery.

Later that night, Steven stopped breathing.

For the next month, with Maria recovering in the hospital, Juan stayed at the babies' side. Steven could not suck and had to be fed through a tube; Juan would poke him every few minutes just to make sure the baby still was breathing.

When the Lugos finally went home after a month in the hospital, Juan and Maria were so overwhelmed they could barely remember which baby they had just fed and which one needed a bottle, to say nothing of the needs of their other four children. And then the questions came: Why weren't the babies holding up their heads? Why weren't they rolling or trying to crawl?

There was nothing that could be done, the doctors told them. These things just happen. You could try physical therapy, they said, but there was a seven-year waiting list. Panic set in.

"Everything shifted after the twins came into our lives," said Maria's oldest daughter, Marieta. "It was chaos."

Maria and Juan knew they would have to come to the U.S. mainland for better medical care. So they packed up the twins and left for Virginia, where Maria's sister lived. In time, they would seek advice from doctors in Washington, D.C., and New York City.

"They left behind everything - their home, their jobs," Marieta said.

"Even us."

Marieta, then 16, would care for her little sister, Joan, who was just 11 months older than the twins. Together with their brothers Big Jose, who was 14, and Felix, who was 10, they would stay with their grandmother until Juan and Maria could send for them. That would ultimately take three months.

Even now, it is a bitter memory.

"They didn't have time for me," said Joan Lugo, 20, a nursing student at Milwaukee Area Technical College. "Basically, my mother turned me over to my sister and said: 'Here. You take care of her. We've got way too much going on.' "

One of Juan's cousins, a social worker who lived in Milwaukee, suggested that they move to Wisconsin, which was considered to have one of the best programs in the country for cerebral palsy care. In 1988, the family settled in an apartment in Brown Deer.

The Lugos got by with the money they received for the twins' Social Security, then about $700 a month, along with food stamps and whatever additional government aid was available.

Juan worked as a handyman and began learning the language so he could seek a college degree in education. Maria stayed home, caring for the children.

"We didn't speak one word of English," Maria said.

Marieta, an honor student who had taken college-level courses in Puerto Rico, enrolled at Riverside University High School. She was horrified when she was [arse]igned to remedial cl[arse]es.

"They thought I had learning disabilities because I had a thick Spanish accent," she said. "I would sit in cl[arse] with a dictionary on my lap. Then I would come home at night and cry myself to sleep. Every single night."

The older boys got teased at school. And there were other adjustments.

"We couldn't believe how cold Wisconsin winters could get," said Big Jose.

But the twins were growing stronger. The next year the family moved to Orlando, Fla., where they lived for five years. They loved Florida. But the care for the twins was better in Milwaukee, so all but Felix, the third of the six children, returned. This time, they settled on the south side. Juan, who by then had his teaching degree, got a job teaching at Lincoln Center of the Arts; Maria, who had earned her teaching certification in Florida, taught kindergarten.

"I think all the commotion was too much for Felix," Maria said. He eventually moved back to Puerto Rico and got a degree in occupational therapy.

He teaches disabled children, many with cerebral palsy.

Stress test
Whatever Jose and Steven could not do for themselves, the rest of the family did for them. That often meant the other children were pressed into service. Joan would comb their hair, Big Jose would help get them dressed.

There were years of evening occupational therapy sessions, Saturday morning reading cl[arse]es, orthodontist and eye doctor appointments.

It seemed endless and exhausting. Maria's children began to worry that the strain was slowly killing her.

It was.

One day in 1998, Maria was cleaning up her cl[arse]room when a fierce pain shot down her chin and, eventually, paralyzed her whole face. She could barely breathe. She was having a heart attack.

"Thank God that Big Jose was coming to get me that day," Maria said. "Otherwise, I don't know what would have happened."

Maria stayed in the hospital for a month and a half, much of that time in intensive care, with tubes feeding her and helping her to breathe. While there, she developed an infection, and the family again braced themselves. The priest came, heard her confession and gave her the blessing for the dying.

Today, the scars from her surgeries run from her collarbone to her thigh. Her legs swell when she stands for too long, and the medication makes her tired and dizzy. She is unable to work.

The other children have begged their mother to get help for the twins, now that they weigh more than 160 pounds each. Maria refuses.

"These are my babies," she said. "I am the mommy."

Marieta thinks her parents feel guilty, "like somehow it is their fault that the boys cannot walk. So, they are trying to be their legs for them."

Beach dreams
A little less than a year ago, Jose and Steven went with their family to Puerto Rico for Marieta's wedding. Steven and Jose were the guests of honor. After all, they were the ones who fixed up their sister with Luis Cruz, their school bus driver. The twins delighted in their matchmaking.

"I said to Luis: 'Which one do you want? The big one or the little one?' " Steven said.

Before the ceremony began, Steven and Jose went out back to check out the beach. As they stared at the pounding surf of the Atlantic Ocean, they dreamed of the graduation ceremony. They imagined the relatives who would be there - Grandma from Puerto Rico, and maybe their aunt from Virginia. Their mother would serve big plates of arroz con salchichas, cans of cold soda and flan. Lots and lots of flan. They joked about how the crowd surely would cheer as the two made their way, however unsteadily, across the stage in their caps and gowns. Walking.

Their upper bodies were as strong as any healthy teenager's. Cerebral palsy had left their legs weaker than those of a 90-year-old man.

It took two people just to hold Jose up with a harness. Even then, his backside would jut out and his feet twist in toward each other so that he looked like Bambi sliding on the ice. Steven had better fine motor skills, but he couldn't move more than a dozen feet in his walker before he was too tired to go on.

It seemed like such a simple plan. Their little blow for independence. And, in a way, it wouldn't be just Jose and Steven walking across that stage the next June. It would be the whole family.

But it is surprising how deceptive the sea can be. The surf that looks so peaceful from the bluff can be as destructive as a tornado.

The twins had no way of knowing on that sweet-smelling summer day what they were getting themselves into.

"Check it out," Steven said, hitting Jose on the arm, as he waved to the imaginary crowd.

Jose shook his head and laughed.

Now some pictures of the two:

Jose and Steven Lugo were raised to think they could do whatever they wanted, despite their cerebral palsy. That philosophy was at the root of their success. It also exacted a heavy toll on them and their family.
TODAY: A goal is set, and dreams take flight.
MONDAY: A taste of freedom, and then vulnerability.
TUESDAY: As graduation looms, challenges all around.

http://graphics.jsonline.com/graphics/news/img/jun04/twinsbig0613.jpg
Identical twins Steven (left) and Jose Lugo, 19, look out at the Atlantic Ocean in Barceloneta, Puerto Rico, last summer. The brothers, who were born with severe cerebral palsy, return with their family to their native Puerto Rico each year to spend part of the summer with relatives and friends.


http://graphics.jsonline.com/graphics/news/img/jun04/guysbig0613.jpg
Steven (left) and Jose Lugo, 19, sit outside their home in Milwaukee last month, talking about their love interests and a weekend camping trip. The brothers agreed in 2002 to walk across the stage at their graduation Tuesday.

http://graphics.jsonline.com/graphics/news/img/jun04/lugobig0613.jpg
Steven Lugo shares a wedding dance with sister Marieta, a teacher in Milwaukee, whom the twins introduced to Luis Cruz, their school bus driver. The couple married on July 26 in Puerto Rico.

http://graphics.jsonline.com/graphics/news/img/jun04/snowbig0613.jpg
After disembarking from his school bus, Steven Lugo veers off a path cleared for his wheelchair near his home after a snowstorm in January.

http://graphics.jsonline.com/graphics/news/img/jun04/windowbig0613.jpg
Steven Lugo waits for the school bus in March at the family's home, on the south side.

http://graphics.jsonline.com/graphics/news/img/jun04/bathbig0613.jpg
Maria Lugo gets Jose ready for school at Hamilton High after awaking at 4 a.m. with her husband, Juan, to help Jose and Steven. The twins were born two months early nearly 20 years ago in Puerto Rico. To get adequate care, the couple moved the twins to the United States. The rest of the family came later.

http://graphics.jsonline.com/graphics/news/img/jun04/cakebig0613.jpg
The twins blow out candles on their cakes during their 19th birthday party July 27, 2003, at a Chinese restaurant in Vega Baja, Puerto Rico

I know these two boys from my school. They're soooooooooo sweet and caring!!! I had them in one of my biology cl[arse]es last year, and me and my friend were laughing. They were hitting on me!! :):) Lol

Gidget
06-14-04, 10:06 PM
thanks for posting, linds! :)