Wish Book

Wish Book: New country means fresh beginning for teen with cerebral palsy

MIAMI HERALD STAFF

Margarita Lopez lives for days like this one — when son Samuel Saez is not crying, when he responds to her caresses, when he seems to know what’s going on around him. There aren’t many of these, but enough to keep her going.

“You learn to treasure mornings like this,” says Lopez, 44. “You thank God for them”

Samuel, 13, suffers from cerebral palsy. He cannot see except, perhaps, shadows. He cannot speak. He spends most of his time in a wheelchair or propped on a living room sofa, unable to stretch out his legs. He can hear, however, and he recognizes his mother’s voice and his sister’s. When his 8-month-old niece jostles into the room in her pink walker, he turns his head and seems to gurgle something.

“I know he recognizes the children,” Lopez says. “He gets very upset when they cry.”

Samuel is the youngest of Margarita Lopez’s and Cirilo Ramon Saez’s children. He lives in an immaculately clean three-bedroom home with his parents, his older brother Emanuel, 16, and his sister Madelaene’s family, which includes her husband EmanuelCastro and two children, 8 months and 3 years old. It is a tight fit but the family feels blessed to be in this quiet bedroom community in southwest Miami-Dade.

Finances are tight. The family lives on earnings from Castro’s job as a welder and Cirilo Ramon Saez’s wages as a mechanic, though the latter’s job depends on whether there are enough cars coming to the repair shop. Lately, his employer has sent Saez home because there hasn’t been enough work. Samuel also receives a Social Security disability check that goes straight toward paying rent.

“We are always praying for a more steady job for my husband,” Margarita Lopez explains.

Originally from Villa Clara, Cuba, the family has been living in Miami since September 2013. They marvel at the bounty in the supermarket and the professionalism of the therapist who comes to exercise with Samuel twice a week. In Cuba, therapy for children with conditions such as cerebral palsy is very spotty, Saez explains. The boy received help only a few times in his years on the island.

She would like to send Samuel to a school program recommended by her caseworker at the Agency for Persons with Disabilities, but she worries about how he will react in a strange environment, particularly since he sleeps so poorly at night and is often in pain.

“We think he’s in pain maybe in his hips and legs, but we don’t know for sure because he can’t communicate,” Lopez says. “He cries out and we have to guess.”

Lopez rarely leaves her son’s side. When she does, it’s for a quick errand. “When I go out, I can’t seem to relax,” she says. “I can’t stop thinking about him.”

Including Samuel on family outings to church requires a bit more brawn and she must depend on her husband or son-in-law for physical assistance. That’s why the family is hoping for a wheelchair lift and occupant vehicle restraint system to safely transport Samuel in the family’s 2003 Chevrolet Astro van. (She and daughter Madelaene joke that the van probably wouldn’t run at all if Saez wasn’t around to fix it every time it breaks down.)

Lopez spends her day tending to her son, making his pureed meals or moving him from the special wheelchair to the sofa by herself. Sometimes she snuggles with him in a rocking chair. But the constant attention does take its toll.

“She’s always in pain,” says Madelaene Castro, “because she does everything herself. She just won’t tell you.”

Lopez admits her back hurts — but only after being prompted by her daughter. Because Samuel sleeps so restlessly, sometimes crying out in the middle of the night, she is also sleep deprived. But “I do this with love,” she says. She does worry, however, about who will take care of her son if something should happen to her.

It is this kind of unconditional maternal love that prompted Ana Elias, the caseworker for the Agency for Persons with Disabilities, to nominate Samuel Saez for the Miami Herald’s annual Wish Book drive. “He looks so happy and well taken care of,” Elias says. “When you meet them, you fall in love with the family, especially when you see the way the mom interacts with him. They’re very nice, very loving.”

In addition to the wheelchair lift, Elias suggests contributions of PediaSure, a nutritional supplement Samuel drinks. The Saezes would also like a hospital bed for Samuel, who now sleeps in a regular twin, making it more difficult for his mother to lift him up and into the wheelchair.

Samuel was a twin, but his brother did not survive delivery and doctors initially told the family that Samuel hadn’t either. Then hospital staff came to Margarita Lopez about a half hour after the premature birth to tell her they had found the infant breathing on his own. She doesn’t know how long he had been left unattended. She calls him a miracle.

“You have to love your children however they are,” she adds. She bends over Samuel and coos to him, “Isn’t that so? Isn’t that so?”

Samuel lifts his head, bobbing to and fro and searches for his mother’s voice.

How to help

Wish Book is trying to help hundreds of families in need this year.

▪ To donate, pay securely at MiamiHerald.com/wishbook

▪ To give via your mobile phone, text WISH to 41444

▪ For information, call 305-376-2906 or email wishbook@MiamiHerald.com

▪ Most requested items: laptops and tablets for school, furniture, accessible vans

Read more at Miami Herald.com/wishbook

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