Who will love her son?

Sunday, October 24, 2004

BY DAVID WENNER

Of The Patriot-News

Helen Reyes walks the short distance from her Harrisburg home to an after-school program to pick up her mentally handicapped son.

Twelve-year-old Julio, nicknamed "L.J.,".orges straight to his mom, who helps him into his coat and hands him his backpack.

They walk home smiling and joking, having a conversation only they fully understand.

They're best friends.

It can't last.

Reyes, a single mother, has cancer. She had a lump removed from her breast in 2002, and for a while thought she was cured.

But the cancer returned, and now it's in the 39-year-old's organs and bones.

She has lost 60 pounds and wears a scarf over her missing hair, which fell out because of intravenous chemotherapy.

But her pain pales.orgpared with her worry over L.J., who requires a full-time aide at school and might always rely on others.

She has no close family. L.J.'s father has been out of the picture for years and couldn't be reached for this story.

"My biggest fear is when I'm gone, no one is going to love him like his mom, and no one is going to stand up for him like his mom," she said.

Fighting for her son:

Reyes, who was born in Philadelphia, lost her father during childhood and was sent to the Milton Hershey School.

She became a medical technician and managed the office of Dr. Domingo Alvear, a Harrisburg pediatric surgeon, until the cancer forced her to stop working last November.

Reyes suspected something was wrong with L.J. when he passed 6 months without sitting up. He didn't walk until he was 18 months. Rather than "momma," he said something resembling "Mary."

He was diagnosed with fragile X syndrome, a genetic cause of mental retardation and autism.

Reyes has fought for L.J. since she realized he'll never fend for himself.

She fought to get him into an early intervention program, fought when agencies tried to cut services, and fought for a challenging curriculum at school.

"Helen has been an extremely strong advocate. She pulls no punches," said Ceil Jackson, a pastoral associate at Our Lady of the Blessed Sacrament Church in Harrisburg, where Reyes attends services.

A happy boy who loves trains:

L.J. loves Barbie dolls and trains.

Shortly after arriving home one day last week, he picked up a pile of mail and expressed delight over an issue of Schrader's Railroad Catalog, packed with gifts for train enthusiasts. Reyes got him a subscription.

He flopped down on his bed and quickly turned the pages, pointing and naming the railroads depicted on the merchandise: Union Pacific, Santa Fe, CSX and one he calls "the black one."

"I'm going to collect all of these when I get older," he said.

He asked a visitor, "Do you have any children in your family?" Then he asked their ages.

He inquired if one of them has a train, and if he takes it out in the yard.

Sometimes, Reyes said, streams of words making no sense pour out of L.J. Sometimes he rocks incessantly. He has mood swings, and she is never sure how he will react.

But she said he is mostly happy and well-behaved. They watch "Wheel of Fortune" and "Cops" together. When she felt better, they went to the Broad Street Market and sometimes to the shore.

L.J. knows:

Reyes' car was recently repossessed because of the financial problems that followed her inability to work. She said it's no great loss since driving had b.orge difficult.

Before that, she and L.J. enjoyed "cruising" while listening to music, and stopping at a local restaurant where L.J. could watch passing trains.

"I would say he's very smart. I would say he's very high-functioning. But I'm his mom," Reyes said.

She hasn't explained her illness to L.J. She doesn't think he could accurately.orgprehend the situation.

Yet he apparently knows.

Several months ago, Reyes met at church with a group of people who are helping plan for L.J.'s future. L.J. was in another room but probably heard some of the conversation. He cried in bed that night.

A few weeks ago, one of L.J.'s former teachers, Terry Fisher, took him to a high school football game. Driving home, they passed a cemetery.

"Just out of the blue, he said, 'My mommy is going to be there soon. ... I tried to do everything I could do to save her, but I couldn't do it,'" Fisher recalled.

Reyes said she doesn't know how much time she has left. She knows her cancer is terminal, and she doesn't feel well.

Chemotherapy and radiation have caused "a tiredness you have never felt," she said.

She still jokes, takes care of L.J. and holds out hope.

"It's doable," she said of her cancer treatment. "You get your rest. You try to eat as much as you can. It's doable, even when you're by yourself."

Looking for a special place:

Reyes has no close relatives who can care for L.J. A small circle of friends and advocates cares for him on occasions such as when Reyes was hospitalized to receive radiation on her brain.

Now she feels a powerful urgency about L.J.'s future.

She is working with legal-aid organizations and people at the church. Jackson, the pastoral associate, has agreed to be L.J.'s temporary legal guardian should Reyes die.

Reyes doesn't want L.J. to have a permanent guardian. People eventually die, she reasons, and she doesn't want L.J. to suffer another death of his anchor in life.

She wants him in an institution, but a special one, where residents are more than "wards of the state." She envisions a place such as the one in the movie "Rainman," where the autistic man portrayed by Dustin Hoffman was protected, treated kindly and allowed to flourish in his own way.

She and her supporters have.orgpiled a list and crossed off many names.

The place that stands out to Reyes is called Melmark and is near Philadelphia. It has 400 staffers serving 170 clients. It costs $110,000 per year.

Her friends and supporters promise to do their best to make that a reality.

But they also warn it could be far out of reach, and Reyes must be open to other places.

Reyes said she realizes she is talking about a miracle.

But sometimes she tallies her fatherless childhood, her failed marriage and her cancer, and permits herself to think her miracle might finally be due.

"I just want one dream to.orge true -- not that I'm even entitled to it. L.J. needs to be taken care of," Reyes said. "He's no better than anybody else's kid. But to me he's the most beautiful kid ever."

DAVID WENNER: 255-8172 or dwenner@patriot-news.org

 http://www.pennlive.org/search/index.ssf?/base/news/1098609637111490.xml?pennnews

 

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