Steve Anaya-Villamil, 7, was a smart little boy who loved soccer, first grade, cars and his parents. His beaming face shines in scores of photographs, as he impishly throws snowballs at his mom, rides piggyback on his father’s shoulders, scores a game-winning goal in soccer, and enjoys outdoor games in his Adventurer Club group.
But this week, grief hangs heavy over Greenport, as Steve’s parents, Zanesa C. Villamil and Edgar Anaya, prepare for the unthinkable: The burial of their child.
Steve, who was a first grader at Greenport Elementary School, died on March 22, after a lengthy battle following brain seizures last June.
Family will receive friends on Thursday between 4 and 8 p.m. at the Horton-Mathie Funeral Home in Greenport. A funeral service will be held at 7 p.m. by Pastor Elias Salcedo. Burial will be private at Sterling Cemetery.
Her son, Zanesa Villamil said, woke up on June 10 of last year and got ready for first grade. An avid student, he had a perfect attendance record in kindergarten. She remembers making pancakes and giving her son a tiny sip of coffee, because he loved it, she said.
Steve also dabbed on his father’s cologne, which he liked better than baby lotion.
Then, Villamil said, her son said something that gave her pause. “He said, ‘Mommy, we can talk even though I’m not opening my mouth.'” I didn’t understand what he meant, but I told him that I did,” she said.
Villamil didn’t know that the words were some of the last she’d her her bright, talkative boy speak.
Next, she said, her son put on his backpack and indulged her when she insisted on a sweater before walking him to school. The couple also has a son, 18, named Edgar, who is in ninth grade.
“I always gave him a kiss and a hug, but that time, for some reason, the hug was very tight,” she said.
That was the beginning of a journey that led to the loss of a child who was loved beyond measure. A few hours later, Villamil got a call from the school that her son had fallen asleep in class.
After picking him up, Villamil said she tried to engage her son in play, and even asked if he’d like to go to 7-Eleven, a favorite treat, or play with his Nintendo Dsi — but all he wanted to do was sleep. “I was scared,” she said.
She and her husband brought him to the pediatrician, who told the couple it was most likely a virus, but at their insistence, did some tests.
Later that night, Villamil said she tried to urge Steve to eat dinner, but all he wanted was to sleep. Although his dad tried to play with him, and they offered to let him watch television, Steve could not keep his eyes open.
And then, Villamil said, the nightmare began. “He tried to talk but he couldn’t speak, and his speech was slurred,” she said. The couple raced the boy to Eastern Long Island Hospital, where he was conscious at first.
Later, she said, his eyes started moving in his head and his face turned red. “I was scared,” Villamil said. “I screamed. I can’t describe how it felt, in my heart.”
Steve was transferred to Stony Brook Hospital; they were told he’d suffered “hundreds” of seizures and convulsions in 24 hours.
With their son in an induced coma, Villamil said she watched helplessly on the monitor as her son suffered seizures and a breathing tube was inserted. Water was building up in his lungs, they said.
“That was the most hard for us, seeing him that way. His body had never even had a scratch,” Anaya said. Describing how he had to sign the papers allowing for medical procedures, his eyes filled with tears.
“He was never sick. Never,” Villamil said, adding that the one time he’d had a tiny scrape on his hand, she’d covered it with car-adorned Band-aids and kisses.
At one point, the grief-stricken parents were asked if they felt it was time to have their son’s ventilator turned off.
“They said he could go comfortably, that he had no more life,” Villamil said. “I cannot tell you what I felt,” she said, sobbing. “I told my God, ‘God, you gave me this child. I love my son. I cannot do this. God, why?’ I was yelling. I know you’re not supposed to ask God but I asked: ‘Why? I cannot live without my son,'” she said. Villamil said she cried and prayed for hours, then saw a light in the sky and said, “‘God, I know you are there.'”
Then, with a mother’s strength, Villamil said she told her husband that they must rest, with a big day ahead. “There was no more crying,” she said. “Just praying.”
The next day, doctors told them that even if her son woke up, he would not be able to move his hands and would most likely be compromised. “I told them, ‘You don’t know. Only God knows.'”
She found her strength, Villamil said, in memories of words her son had told her: “Mom, you are my champion,'” she said. “He used to say, ‘You are half my body. I am half you, and half me,'” she said. “I said,’Your heart is my heart. Your eyes are my eyes.’ I told him, ‘You are my life. I will do whatever I can for you. I live for you.'”
Her son used to say, “I have the best mom in the world,” Villamil said. “He called me his ‘princess.'”
The couple decided not to remove their son from the ventilator and Steve was moved first to NYU Langone Medical Center and later, after he was able to squeeze the doctor’s hand, to the Blythedale Children’s Hospital in Valhalla, NY, where he lived until earlier this month. While he was at NYU, his parents slept by their son’s bedside.
Over the past year, Steve’s parents said the community, including the Greenport school community and church members opened their arms to their family, with offers of financial help — which the couple said they could not accept, but for which they were so thankful — and with calls and gifts for their son.
In September, Steve moved to Blythedale, and Villamil said she felt the stirrings of hope. Although Anaya had to stay in Greenport to work, he visited as often as he could. But coming home at night, to his son’s crayoned pictures on the wall, his toys and car-shaped bed, was heartbreaking, he said. “I would sit outside in the car until 1 a.m., because it was easier than coming inside,” he said.
All day, no matter where he was, whether at work or at the store, Anaya said, “I kept praying.”
There were moments when Steve opened his eyes, and even moved his hand to dry his mother’s tears, when she cried, Villamil said. Her son, she said, never liked to see anyone cry, and she did her best to cry in private. “I cried in the ladies’ room, in the parking lot, but not in front of him,” she said.
Their son, she said, spent his seventh birthday at NYU and Christmas at Blythedale, where he was surrounded with piles of presents from friends and the love of a caring staff.
“When he opened his eyes, the nurses were crying; everyone was running,” she said.
Sharing photos of their precious son, the couple remembered how Steve attended school in a wheelchair at Blythedale, raced down the hallway in his wheelchair with his dad, how he kissed them and even gave them a thumb’s up. During physical therapy, he was able to express when he did not like something. I’d tell him, “You can do it,” Anaya said. “You’re number one.”
“The doctors said he wouldn’t move but he did it,” Villamil said.
Perhaps the greatest moment of all, she said, was when, after months of prayer, she heard her son say “Ma.”
“I had told him that for so long, I had not heard the words ‘I love you,'” she said. “My husband, my family told me they loved me, but they weren’t my son.”
With her family in Honduras, and Anaya’s in El Salvador, prayers were being said for Steve for miles.
In March, Villamil brought her son home, a dream come true. “God gave me that,” Villamil said. A “Welcome Home” banner still hangs in the doorway of the Front Street house, a sad reminder of broken dreams and hope dashed.
Only a few weeks after returning home, Steve became critically ill, and he was rushed back to the hospital, to the intensive care unit, and his parents were told that his kidneys were failing and his body swelling. With his blood pressure dangerously low, the little boy just couldn’t rally.
“I told him I loved him, that he was my life,” Villamil said. “We did everything we could, but only God can give life. I told him, ‘If you want to go, you can go,'” she sobbed. “But I said, ‘Please, stay.’ I don’t want to live if God takes my son.”
Watching her son have a tube put in his neck broke her heart, Villamil said. “I knew he couldn’t feel it, because he was asleep,” she said. “But I felt it.”
And then, as doctors tried valiantly to save him, her son’s heart stopped beating. “They asked me if I wanted to leave the room, but I couldn’t go. Nobody could move me,” she said. “People have told me the hardest part will be when we take him to the cemetery. But for me, that was the hardest part. When his heart stopped.”
Her face gentle and smiling as she pointed out memories of Chuck E Cheese’s, of his fifth and sixth birthday parties and pinatas, of days spent on the beach and in the forest, and always, always, in his parents’ loving arms, Vilamil said her son never gave up. “He never said, ‘I can’t,’ she said. “He always said, ‘I can do it.'”
Weeping softly, she said her little boy knew every day of his life how much he was loved by his parents. “I think he had a good life,” she said.
The community mourns with Steve’s parents, Doug Mathie, owner of Horton-Mathie Funeral Home, said. “When a parent loses a child, whether they’re four or you’re 100 and your child is 80, it’s unimaginable,” he said. “Losing your baby, it’s not natural. We are born to bury our parents, not our children.”
Looking at hundreds of photos of her son’s smiling face, as he ran free — he was always in motion, Villamil said — she recalled promising her son, “When I see the sky, the stars, I will see you.”
She added that although talking about him was hard, sharing her memories of Steve helped her to keep her vow to her only child.
“I promised Steve that we would never forget him. I told him, ‘Your name will never be forgotten.’ I don’t want him to be remembered only as sick, or that he died. I told him he will be remembered forever.”
