New York Times Neediest Cases

The Glorious Achievement of Zipping Up a Sweatshirt - New York Times

Jose Alvarez has trouble sleeping. It is the pain from his back injury. It is the stress of paying the bills. It is the worry that his daughter will never live a normal life.

Mr. Alvarez’s life changed in 2005, when a car backed into him on 24th Street between Eighth and Ninth Avenues in Manhattan. Mr. Alvarez, now 63, was working as a boiler mechanic and welder at a few buildings on the street. Since the injury, he has been unable to work, because of herniated disks in his back.

A quick jerk or movement sends Mr. Alvarez into excruciating pain. Without a job, he relies on his mechanical worker’s pension and Social Security disability benefits.

“I don’t feel like a man anymore,” he said. “I don’t have a lot of movement, and the doctor says I should not pick up any more than 12 pounds.”

His limited mobility has proved especially difficult because his 4-year-old daughter, Kenerly, has Down syndrome.

Kenerly was born in Santo Domingo, the capital of the Dominican Republic. When Mr. Alvarez and his wife, Yuny, found out that she had Down syndrome, they were shocked and devastated.

“I cried,” Ms. Alvarez, 41, said. “I knew something was wrong when they didn’t bring me the baby right away.”

The parents knew they would need to move to New York, where they would have access to better health care for Kenerly.

The problem was getting into the country. For years, Mr. Alvarez, who had initially moved to New York to work and send money back to his family, tried to gain entry for his wife, whom he had met during one of his trips home. But immigration authorities questioned the legitimacy of their marriage, until January 2014, when the couple was able to move to New York, Mr. Alvarez said.

Leaving their entire support system behind in the Dominican Republic, Ms. Alvarez and Kenerly moved into Mr. Alvarez’s home, which was the back half of a fourth-floor walk-up apartment in Washington Heights, in Upper Manhattan. The family owns the back bedroom and living room but shares a kitchen with live-in neighbors.

For the first few years of his daughter’s life, Mr. Alvarez was Kenerly’s primary caretaker during the day because his wife works as a home attendant. With Mr. Alvarez injured and Kenerly struggling to walk and climb stairs, father and daughter had to stay inside until Ms. Alvarez returned home.

Everyday tasks, such as changing her diaper and feeding Kenerly, are a struggle. She is not fully potty-trained and still uses diapers. It is difficult for Mr. Alvarez to lift her onto the toilet, and for a while she would use the bathtub instead. “I do things even though it’s hard,” he said.

Unable to lift her into a highchair, Mr. Alvarez had to improvise. “It was hard for me to pick her up,” he said. “So I had to teach her how to get up there by herself.”

But Mr. Alvarez had help teaching his daughter to climb into the chair. In September last year, the family found Kennedy Child Study Center, an agency affiliated with the Catholic Charities of the Archdiocese of New York. Kenerly, who receives physical and occupational therapy through the center, which helps children with developmental delays, is learning to climb stairs and can now use a spoon to feed herself.

“It takes a lot of pressure off me having the school and feeling like I’m not the only person who can take care of my child,” Mr. Alvarez said.

But with the added costs of Kenerly’s diapers and food, he still worries about paying the bills and even the rent. The couple receives about $2,500 a month total in benefits and in Ms. Alvarez’s pay.

“Sometimes we have to be late on the rent,” Mr. Alvarez said. “It’s hard, but we have to do it.”

Catholic Charities, one of the eight organizations supported by The New York Times’s Neediest Cases Fund, used $297 to pay for diapers, wipes and clothes for Kenerly.

Kenerly, sporting her new pink-with-white-hearts Minnie Mouse zip-up sweatshirt, showed off her newfound skills by unzipping the jacket, something she was unable to do until she started going to Kennedy Child Study Center. She then went straight into the bedroom and emerged with her mother’s makeup. She climbed up on the reclining chair and began to apply it to her face.

“She’s a very special child,” Ms. Alvarez said. “She has a lot of personality.”

But Mr. Alvarez still worries about Kenerly as she grows up. “Will she be able to work? Make money? I often can’t sleep thinking about this,” he said. “Will she ever get married? Have children?”

Kenerly is drawn to her father. It is as though being stuck in their apartment all that time allowed them to form a particularly close bond. She often climbs out of her crib near her parents’ bed and over her mother and snuggles up next to her father.

“I love her so much,” Mr. Alvarez said, holding back tears. “You can’t imagine how much I love her. I have her in my heart and soul.”

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